Cameron, Heather, & daughter Lily today

When Cameron initially contacted me about his story of hope, his question to me was, Will you publish our story even if it does not involve transplant?  This question took me very little thought because after all, this blog is about “Hope” and even though Cameron & Heather’s journey may be different from the transplant stories that I publish, it is actually very similar in so many ways. Cameron hopes that sharing their story of success over cancer can be a source of inspiration to all those currently struggling through cancer today encourage them to continue to hold on to “Hope”. The thing that I related to most was Cameron’s initial resistance to accept “help” and trying to bear everything on his shoulders during the depth of their struggles including the care of their newborn baby girl in addition to his wife.  Accepting help is difficult for so many of us but it is sometimes necessary to realize and accept that we cannot control everything we must lean on our faith and our loved ones during difficult times whether the need be… food, financial, childcare, prayers, the list is endless. It is amazing how people “step up” and are there for you with physical, spiritual, and emotional support…S

This is Cameron’s story in his words:

Caring for the Love of My Life: Our Cancer Story…

I will never forget the year 2005. It was almost catastrophic at a time when my family was just beginning. My wife was diagnosed with malignant pleural mesothelioma on November 21st. It was just a few days before Thanksgiving. For months prior to November, we had been preparing for something else, our first born child, Lily. Just three months after she was born, her mother’s life was hanging in the balance and I was about to go through my first real experience as a caregiver.

It began the moment that I heard the diagnosis with my wife. As we sat together listening to the doctor, I couldn’t help but wonder why this was happening to us and be struck by the grief of understanding how difficult it was going to be. The doctor gave us a few treatment options, but he stated that our best choice was to see a specialist. There was a local university hospital, regional hospital and a specialist from Boston named Dr. David Sugarbaker. I still remember seeing only one choice. We had to get to Boston. That was the only way I was going to save my wife’s life.

The next two months were in complete disarray. I didn’t have any control over my life after that. I had to be there for my newborn. I had to be there for my wife. I still had my job, and I still had all of my other responsibilities. I didn’t know how much more I could take, and through it all, I kept thinking of my doubts. I couldn’t help but picture a scenario where my wife died from cancer, and I was left alone to raise a baby who would never really know her mother. The thought terrified me, and more than once I broke down crying on the kitchen floor from the stress. However, even on my bad days I was careful to never allow Heather to see me in my moments of weakness. I knew she needed me to be strong, and I did my very best to give her that.

That was when help came. Heather’s family had always been there for us, and if I had only been more proactive in the beginning, I can’t help but think how much grief I could have saved myself. It was our family and friends that got us through these difficult times. Heather’s family gave us financial support and childcare, and when things got rough after Heather’s treatment, they were there again for the transition. I can’t thank these wonderful people enough for what they gave to us. The best piece of advice that I could give anyone going through a situation like this is to accept help every time it is offered. Don’t let pride get in the way. There is no room for pride when your loved one’s life is on the line.

Over the following months, Heather would undergo extreme treatment procedures under the care of Dr. Sugarbaker. There were many, many more struggles ahead, but in the end my wife would prove how tough she is. She accomplished a rare feat, and beat mesothelioma. She is still healthy and cancer free to this day, over seven years later. It is our hope that our story of success over cancer can be a source of inspiration to all those currently struggling through cancer today.

To read more about Cameron and Heather’s story, visit their blog:
http://www.mesothelioma.com/blog/authors/cameron/
http://www.mesothelioma.com/blog/authors/heather/

I was diagnosed with heart failure in 1995 and had to go on disability in 1996. I guess this was from the stress on my heart from the previous two aortic valve replacements.
I was blessed to be considered for the heart transplant program. I underwent the eligibility test and passed, but I couldn’t go on the transplant list until my insurance would approve it. This turned into a long wait since I was on cobra (this is where you pay the premiums for your employer’s health plan) and not on Medicare yet.
My dad died of heart failure in 1997, and I knew it was like looking in a mirror and I would not be long behind him. I was declining fast.
On March 24, 1998, I got a call from my heart failure nurse, to tell me my insurance had finally approved me to go on the transplant list. I thanked her.
What I haven’t told you was at the time of “the call”, I was reading my Bible and asking our LORD for forgiveness. I had strayed off the path in the past and was trying to make amends, because I knew there was no way I was going to make it. So when the nurse called I didn’t think much about it, because you can be on the list for months and I had just been listed.
So I went back to praying for forgiveness, and I got another call two hours later. It was the nurse and she wanted to talk to my wife. I told her that my wife should be on her way home. I asked if I could help her. She said she would call back in a few minutes. I went back to reading the 21st PSALM.
My nurse called back in about fifteen minutes and wanted to speak to my wife, but she had not made it home. She asked if I was sitting down, I told her I was reading my bible. She told me they had a heart for me and explained that I needed to get to the hospital as fast as possible. I told her I would call the sheriff’s dept. for a ride, she said no she would come get me. (I should have called the sheriff )!
She quickly got me to the hospital with my wife trying to keep up!
I met the surgeon (Dr. Bobby Heath) and he asked if I had any questions. I couldn’t think of any. He said to me you have got to be the calmest patient I have ever had about to have a transplant.
I told him, GOD had already answered my prayers in a way that I was not expecting.
I was sure everything would be fine no matter what!

I must thank my donor family for their gift of love. My donor mom lost her sixteen year old daughter to a drunk driver. Callie is the name of my guardian angel! ♥ Pictured below.

I am so happy that Fred shared his story. As ashamed as I am to admit this, at this particular time in my journey, there are days that I find myself weak in my faith…I allow myself to forget that God is always with me and He is always listening and I realize that I have started building that hard, cold shell of protection again… I feel such shame for this…how could I ever doubt in the slightest that God is with me. I am so very fortunate in so many ways and I know that everything will fall into place in HIS time. Fred speaking of reading the 21st Psalm in his Bible when “The Call” came so unexpectedly soon brings back memories of mine & Blake’s struggle with multiple pregnancy losses and our journey to adoption, I remember that day over 12 years ago so clearly… as I sat at my desk after lunch and prayed to God for relief & within minutes, our call came that our precious son, Trevor had been born. I had said many, many prayers before that day but it was “time”… it was HIS time and looking back, there was a beautiful reason for that painful journey that we simply couldn’t see at the time but now, it is so crystal clear….our precious son, Trevor. And Fred’s story of faith & redemption…receiving a new heart through God’s Grace which has given him almost 15 additional years now thanks to his beautiful “donor angel”, Callie who Fred consistantly honors her memory by living his life by giving God the glory every day…S

Excerpt from the 21^st Psalm

² You have granted him his heart’s desire
and have not withheld the request of his lips.^[b]
3 You came to greet him with rich blessings
and placed a crown of pure gold on his head.
⁴ He asked you for life, and you gave it to him—
length of days, for ever and ever.
⁵ Through the victories you gave, his glory is great;
you have bestowed on him splendor and majesty.
⁶ Surely you have granted him unending blessings
and made him glad with the joy of your presence.
⁷ For the king trusts in the Lord;
through the unfailing love of the Most High
he will not be shaken.

This is a story of love, hope, & perserverance submitted by Adena, James’s wife. James is on an active quest for a second double lung transplant. This is James’s story in his wife, Adena’s words:

James is the love of my life. He has cystic fibrosis and rapidly declined into active lung failure within days of our wedding. We are on a quest for a second double-lung transplant following the development of bronchiolitis obliterans. We are documenting our moments and memories together as we search for hope in the dark and hold each other close for comfort and strength in our blog at: http://breathtoblog.blogspot.com

In October 2009, James contracted the H1N1 Flu. It developed into a severe pneumonia, and James’ health rapidly deteriorated. He became oxygen-dependent. He could no longer stand to shower or brush his teeth, climb stairs, or walk without support. A double-lung transplant became necessary for long-term survival. It was not a cure, but it would extend his life and greatly improve his quality of life.

In November 2009, James moved to Toronto in hopes of qualifying for a double-lung transplant. He was in and out of the hospital. He struggled to maintain his weight above 90lbs. It took James 10 months to become stable enough to qualify for transplant. James waited another 9 months on the transplant list. On May 12, 2011, James received the double-lung transplant that would save his life. He proposed several hours before heading into surgery. Our dreams would finally become a reality.

James’ recovery was remarkable. He had few complications. He had a quality of life never known to him. He gained 40lbs. He rode a bicycle for the first time in a decade. He was happier and healthier than he had ever been. The next year was the best year of our lives. We went swimming, hiking, and camping. We were finally able to plan for the future. We lived together in Toronto. James was also able to return home to British Columbia to visit his family and friends on several occasions.

In May 2012, James celebrated his 1-year post-transplant “lungiversary” with strength and optimism for the future. In the following weeks, James noticed a slight decline in his lung function. A bronchoscopy revealed A1 rejection. A1 rejection is a very common and minor form of rejection that does often not require treatment and resolves with time. James’ lung function continued to decline at a slow and gradual rate.

On July 2, 2012, James and I were married. It was a magical evening of love and joy. It was truly a celebration of life. The following day, James’ lung function took a sharp decline. Another bronchoscopy confirmed the continuation of James’ A1 rejection, in addition to inflammation without known cause or origin. James was given approval to return home to Victoria in British Columbia in mid-July. We were thrilled to start our lives together, but James’ lung function took another sharp and rapid decline. His lung function had decreased from 70% in May to 35% in mid-July.

James was diagnosed with bronchial obliteratons syndrome (also known as lung allograft dysfunction). James had no signs of rejection or infection. This was diagnosis of exclusion. We spent the next few weeks in and out of hospitals for tests and appointments. James received high dose steroids, antibiotics and anti-virals with no improvement in lung function.

James continued to decline on a daily basis. We were advised to return to Toronto immediately to seek a second transplant. We took the next available flight. We arrived in Toronto on August 31, 2012, and James was admitted to Toronto General Hospital through the ER the following day. It had been exactly two years since James’ was first listed for transplant. We never imagined we would be on this journey again in only a few short years.

James’ lung function continues to decrease. He is often short of breath and struggles to breathe on exertion. There are no treatment options available. James has end stage lung disease and is in active lung failure at 12% lung function. He will need another lung transplant to survive.

I took the liberty of quoting a paragraph from Adena’s latest blog entry. I felt that it simply says it all & is a true example of what this journey feels like through the caregiver’s eyes. Adena’s love for James is so obvious in this one simple paragraph – so here it is…S 

“As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.”

Please check out James’s story on Facebook, youtube, & join their blog…

Facebook: http://www.facebook.com/JamesQuestForLungs

Blog: http://breathtoblog.blogspot.com

Youtube video: http://youtu.be/lSrvEHLfnA0

This is Ricki’s story in her words:

Hi, my name is Ricki and I was born with hepatitis C. I found out when I was about 12 years old because I had so many stomach issues. At that time, it was known as non-hepatitis A/B, and I was told I might not live to reach my 20′s. Nausea and fatigue were an issue for me, but I made it through my teens without many problems. I did try the interferon/riboviran treatment for 11 months, but was a non-responder. I was blessed to meet the man I was going to marry at 18 and he helped me through the side effects and depression. In my early 20′s little things started going wrong, my appendix burst, and I had some of the worst gallstones my doctor had seen, both were removed, 6 weeks apart. During this time I kept up with my yearly blood tests and was told my liver was just fine. When I was 26 I had my only son, and it was a lulu of a delivery. He was perfect at 9 pounds, but I had placenta previa, Pre eclampsia, DIC, and HELLP syndrome. Social services were called and my family was sent in to say goodbyes, but there was no way I was leaving my new son. I woke up one week and 3 surgeries later. Again I was told that my liver was fine, but my health started declining pretty fast after that. It started with daily vomiting, which my doctor assured me was due to stress. I switched to a part time job (without health insurance) but my symptoms continued to worsen. I felt like I was losing my mind. One day in 2009, after about 2 years of constant vomiting, I took my sister to a “doctors on duty” clinic for a sore throat and asked the PA about my stomach issues. He ordered an ultrasound, which showed my tiny liver, huge spleen, and a whole lot of ascites fluid. I realized in hindsight that I should have gotten a second opinion sooner. I was sent to an awesome specialist, who referred me to the UCLA transplant team, but because of my lack of insurance they wouldn’t see me. Thankfully USC stepped in and took me right away. We were still struggling with Medicare, but in 2010 a few laws went into effect, and my husband’s insurance company could not deny me for my preexisting conditions anymore. My husband’s cousin saw how sick I was becoming and did the most selfless act imaginable. She gave me 54% of her liver. I did so great for about 3 months. I could eat again, my head wasn’t foggy, I could hold a conversation, no more ascites pressure, or itching, and the biggie… No more throwing up daily. My new liver started having problems pretty quickly though. Fibrosis was starting and I was having a lot of bile duct issues. I had to have a bile drain put in, complete with a lovely bag, and it had to be surgically replaced and sized larger every month. Jaundice, itching, and hepatic encephalopathy started coming back with a vengeance and within six months a second bile bag was placed. The daily vomiting was back also and I began muscle wasting. We started me on a special diet, but nothing was working. We then found out that I had gastro paresis. My stomach was not working, and a J-tube had to be placed to bypass my stomach. A G-tube was also placed (in my stomach) to suck out any fluids that did accumulate in my stomach. (If you are keeping count, that is 2 bile bags and 2 feeding tubes I had coming out of my stomach.) 2011 was a tough year for me. Luckily I had my family to help me through, and my son to keep me focused. I was down to just over 80 pounds and was pretty immobile; most of my time was spent in the hospital. In July of 2011, just one week shy of my one year transplant anniversary, I got the news that they had another liver for me. My first transplant I was out of the hospital in 7 days, but for my second transplant I was in there for 28 days, and then off and on for the next 6 months. For some reason, my body just didn’t seem to be taking well to the new liver. Even my stomach hadn’t started working like we had hoped. I was wasting away and I started preparing for the possibility that I wasn’t going to make it, tucked away letters to family members, started reading children’s books to my son about heaven and dying. My doctors continued to do tests and procedures but had no idea how to help me. In October I was sent home from the hospital and told that there really wasn’t anything else that could be done, but we didn’t give up. In November I started feeling a little better, and by January I had both feeding tubes taken out, and my color was finally going back to normal. This year has been the best of many, many years. I have been home for all of the holidays, my sons first day of first grade, and my 10 year wedding anniversary. My new liver already has some fibrosis and inflammation, but no cirrhosis! So right now I am living each day to its fullest and making memories. I try not to think of what might come, and when I do, I just hold on to faith that my time here is not done yet. I started a part-time job this month and volunteer in Rivers class once a week. None of this would have been possible if it wasn’t for my two donors, my family, and the doctors and nurses at USC! Thank you! Live life, then give life!!

Wow, it never ceases to amaze me when I hear a story like Ricki’s. These stories give me the inspiration to keep holding on to hope. Thank you Ricki  for sharing your journey and you just keep that beautiful, positive attitude & keep living each day to the fullest…S

Ricki & her precious family enjoying life!

Visit Ricki’s blog: Rickisjourney.blogspot.com

I am 42 years old and live in Central Texas. Blood type A+. I am the mother of 4 amazing boys. I also have a wonderful daughter in law. My husband Kevin and I have been married 20 years and are excited to be spending time with our first grandchild. At the age of 21, I was diagnosed with Focal Segmental Glomerulosclerosis, Renal Dysplasia (both undiagnosed at birth) and severe scarring of both kidneys from untreated kidney infections in my childhood. At that point, I was working with less than 50% kidney function. In November of 2007 I started peritoneal dialysis. A few months later, I started developing abdominal hernias due to thinning of the abdominal muscles caused by renal failure and the dialysis itself. I had surgery to correct the hernias in September 2008 and again in January 2009. Within a few weeks/months of each surgery, the hernias returned with a vengeance. From March/April 2009 (after determining that the hernia was BACK) until June 2010, I continued to do PD but had to be in bed hooked up to my dialysis machine for 12 hours a day/7 days a week to get all the cleaning my blood needed. During that 12 hour time, all I could do was go to the restroom. Anything else was restricted. During the other 12 hours a day, I was not supposed to sit too long, stand too long, do anything “strenuous” so that we could avoid another surgery. The transplant surgeon wanted to fix the hernia once and for all when he did my transplant. I was offered a transplant in August 2009. As I was being rolled into the operating room, the surgeon decided that the donor organ was not acceptable to transplant. On December 23, 2009 I received another offer for a transplant. All the testing was completed December 24, 2009 and I was wheeled into surgery. It had started snowing that afternoon. Not only was I getting a kidney for Christmas – but SNOW too!!! I was very excited. This time, I made it ALL THE WAY INTO THE OPERATING ROOM…. I got my transplant. After surgery, the Doctor said that my new kidney was working as it should. Then he said that all of a sudden the color of the kidney changed and it just stopped working. Sometimes with transplants, the organ can be “lazy” he thought or, maybe hoped that this was the case and that the kidney would kick in and start working again. He talked it over with my husband and they decided that we should at least give it a chance. I woke up in the ICU and my husband told me there had been some complications and they may have to go in and remove the new kidney. A little while later, an ultrasound tech came in and started imaging. I could tell by the look on his face, things were not the way they should be. The next thing I knew, the amazingly attractive transplant resident came in and told me that there was no blood flow to the kidney at all. Since the transplant was getting its blood supply from the veins/arteries in my right leg, there was no blood flow there either. I was on my way back into surgery. When I woke up in the ICU Christmas day, Kevin told me the kidney developed a blood clot and had to be removed. They were also concerned about my right leg. It had gone for some time without blood flow completely. The veins and arteries in my leg were completely clotted. It took the Doctors an additional 1 -2 hours to clean all of that out and restore blood flow.

After the first of the year, my sister Jackie wanted to be tested. We found out that she was a match. The plan, schedule the transplant, plan the best way to repair the hernias, and get both things done in one surgery. In April, 2010 I started having constant abdominal pain from the hernias requiring me to actually use prescription pain meds. The Doctor determined that we could not wait on the hernia repair as planned. He determined that we would need to repair the hernia and then schedule the transplant once healing was complete. June 15, 2010 (my 40th birthday!!) I had abdominal hernia repair surgery. The CT scans indicated that there were 2 tears. Both around where the PD catheter had been placed in my abdomen. The transplant surgeon called in the big guns…. a general surgeon who thought I would benefit from a mesh hernia repair. This would likely prevent me from continuing on PD. But, they told me, they would not know anything until they “got in there”. I have heard that a lot these last few years. I hope for the best, but, am prepared for the worst. That way, I am never really disappointed or surprised whatever the outcome is. When I woke up from surgery, it was the worst pain I have ever had. The surgery had lasted longer than they had planned by 2 hours or so. When I got transferred to my room, the first person I saw was Kevin, Brandon, and Jordan. Kevin told me what all had been done. There were actually 6 large hernias. The surgeons placed a porcine (pig skin – porcine sounds better!) mesh in the abdomen where all of the hernias had been removed to stabilize everything. I had 10 incisions where they went in with a laparoscope and one 9 inch or so incision going up and down in the middle of my abdomen. The mesh had to be placed where the PD catheter was so the catheter was completely removed. They placed a tessio catheter in my neck for Hemodialysis. I have been on Hemodialysis since June 16, 2010. It is a big change from PD. It is much more draining and taxing on the body. The plan WAS heal for at least 2-3 months from this surgery then schedule the transplant. My sister had picked out the first weekend of September. On July 16, 2010 we got the call that the transplant was off. My antibodies were up to 96% and I could no longer accept her kidney because of a genetic marker her body has that my body was attacking. Since then, my antibodies have gone above 99%. In November 2010, I had one surgery and an additional procedure performed by the doctor who performed the unsuccessful transplant in 2009. Kevin and I determined that we would no longer accept him as a surgeon. July 3, 2011, I received a call from the hospital that they had another transplant offer for me with the surgeon that we did not want. I turned it down and advised that I wanted the other surgeon. A few minutes later, I received a call that the other surgeon had retired. I am sure that I do not want the surgeon that my hospital/health plan has so I am trying to get listed at another center. At this point, the health plan has agreed to let the hospital that I want to go to handle part but not All of the process. I can get transplanted at the other center – but follow-up/maintenance will have to be done with the Doctor who I do not trust.

I am hoping that getting my information out there will somehow help in finding a donor. All I ask is that you read my information and like my page and forward to your friends asking them to forward to their friends. Anyone who is interested in being tested needs to contact 512-901-2894 Bethany Waldron living donor coordinator. St. David’s North Austin Medical Center. <3

This story of is such a beautiful example of love, courage, sacrifice, and hope. The “gifts of life” made by her mother and future mother-in-law, say it all about Paula who has dealt with failing kidneys for nearly her entire life. She has received two kidney transplants which have since failed and she is in desperate need of another life-saving kidney transplant as she currently undergoes dialysis three times per week. Paula was born in Cantanhede, Portugal. She was born with small kidneys and at the young age of 4, Paula’s parents decided to move to the United States to offer a better future for their two daughters. At the age of 10, Paula was diagnosed with Chronic Renal Failure and her life completely changed…S

This is Paula’s story in her words:
I was on hemodialysis six months before having my first transplant. My mom donated her kidney back in March 1, 1995 and saved my life. I was 25. My kidney lasted an amazing 17 years but after enjoying my mother’s kidney for 17 years it began to fail. This year on March 7th, my fiancées mother donated her kidney through The National Kidney Registry so I could receive a second kidney transplant. Unfortunately, this kidney only lasted 2 1/2 months months. Everything was going well until a stent was placed in the renal artery during an angiogram then a few days later blocked the blood flow to the kidney. My kidney was removed on May 26, 2012. I am lucky to be alive. Now, I am back on dialysis three times a week and my whole life has changed. I am praying to find a new kidney soon.

Coming from a musically inclined family, Paula and her sister Isabel always turned to music and art for comfort and distraction. Isabel was blessed with the voice of an angel and pursued her God given talent. Paula’s diverse talents ranged from singing, ballroom dancing, and now her new adoration, handmade jewelry. Paula began her artisan journey about three years ago in 2009. She started creating jewelry to cope with the loss of her job, illness and help pay for medical bills.
Paula is a strong person and is always smiling. Her journey continues through mostly difficult times but her will remains positive and hopeful she is fighting this battle with all she has…S

Join Paula’s page on Face book: Http://www.facebook.com/ANewKidneyForPaula

Since I began this transplant  journey, I have networked with so many others who are holding on to hope as they await organ transplant or who were fortunate enough to cheat death before finally receiving the life saving organ that they needed. I have had friends die waiting to be actively listed  for an organ, friends who died after finally being actively listed, and friends who died post transplant because they had to wait so long due to the organ shortage that they were so sick that they simply couldn’t recover properly from such a major operation. There are so many things about this frustrating process in dealing with the “red tape”, knowing that the only thing that can save your life, most likely depends first, on someone else’s life ending, and then everything must fall into place so perfectly… it is truly a miracle. This story is of a parents fight to save their daughter, Jenna’s life. Her journey started in high school and as she continues to holds on to hope, they are getting the word out there and raising awareness…S

This is Jenna’s story submitted by her mom: Jenna is 26 years old and needs a kidney donor. The eldest of our 4 children, Jenna, has a rare urological defect that destroyed her kidneys. She began dialysis as a senior in high school, and it continued for more than 3 years until she received a kidney transplant 5 1/2 years ago. That kidney is now failing, and Jenna will have to start dialysis again soon. The statistics are depressing: more than 90,000 people in the U.S. are waiting for kidney transplants. The list grows by nearly 7,000 patients a year. Fewer than 17,000 kidneys are transplanted annually. Most come from accident and stroke victims or living relatives. About 1,800 a year come from other unrelated donors, mostly family friends. Rejection of the original kidney transplant produced fighting antibodies. These antibodies have now made her sensitized to certain donors – making it difficult to find a match. It is now necessary to find a pool of eligible living donors to increase her matching odds. It’s also possible for a willing (but non-matching) donor to enter a paired donation program and by donating on Jenna’s behalf, she would get a kidney in return.

Jenna is on the wait listed for a transplant but without a living donor she could wait for many years. She is blood type O. A living donor candidate is a person who is healthy, well-informed and makes a voluntary decision to donate one of their kidneys. Living donors must be over 18 and usually under 70 years of age. The donor must be in good general health, have a Body Mass Index (BMI) of less than 30, be a non-smoker, with no evidence of significant high blood pressure, diabetes, cancer, kidney disease, heart disease or hepatitis. A donor can live in any state and it is important to know that all medical costs are covered by the recipients health insurance. As you might imagine, donating life to another is a remarkable gift that takes a great deal of thought that can only be obtained by being well informed.

To learn more about living donation please visit Living Donors Online http://livingdonorsonline.org/ldosmf/index.php?board=9.0 For more info about being tested to match Jenna please call Ashley – the Living Donor Intake Specialist at Scripps Green Hospital in La Jolla – (858) 554-4363 – tell her the patient is Jenna Franks. Our email is: kidney4jenna@yahoo.com We created a Facebook page to help our daughter Jenna find a kidney donor. Please stop by and LIKE her page. https://www.facebook.com/pages/Wanted-Kidney-donor/246787398756603 Please share the page–even if we don’t find a match for her, we can help someone.

While on this path, so many things have surprised me, deflated me, infuriated me, inspired me, and most of all, driven me but one of the things that has been the most surprising is the number of people who die awaiting a life saving kidney transplant. A kidney??!! How can this be, everyone has a “spare”….unbelievable! You can save & enhance up to 50 lives as a final act of love. Be An OrganDonor… S

This is Natalie’s story in her words:

My name is Natalie Williams, I’m fourteen years old and have a rare, life-long, life-threatening childhood liver disease called Biliary Atresia. A disease which most medical professionals do not know about let alone “normal” people, which results in late diagnosis and increased scarring of the liver. Biliary Atresia has no known cause or cure and effects 1 in approximately 20,000 infants shortly after birth. My twin sister, Kathryn, and I were born on August 29th 1997 in Wolverhampton, England. At first we were both declared healthy but shortly after birth I began to show signs of a very sick baby and my parents knew something wasn’t right. My eyes and skin were yellow (Jaundice), I vomited after virtually every feed, was very tiny and would not gain weight or grow despite how much food I was given, and my stools were chalky white. Although my parents expressed their concern to health visitors and our GP, they were told there were no health problems and that they were being paranoid, overly worried and protective. At 9 weeks I was diagnosed with Biliary Atresia. I was immediately taken to UK’s best hospital for Biliary Atresia and met Professor Deidre Kelly, the world’s leading specialist in childhood liver diseases. Thanks to Dr. Buick who came home from vacation early to perform my life-saving Kasai operation when I was 9.5 weeks old I was given a second chance at life. In order for this procedure to be successful the operation needs to be done before 10 weeks of age. Today I am 14 years old and so far, liver transplant free. Though we know my Kasai could fail at anytime we stay very positive and focus on the good in life instead of the future and what it may bring.

Pic of Natalie as an infant after major surgery & pic of she & her twin sister, Kathryn.

Unfortunately Biliary Atresia brings many horrible side-effects, I happen to have most of the ones that require their own “special” medical treatment. A very enlarged spleen, (3x+ the size of a normal person’s), low platelets, ascities (fluid in the abdomen) and severe portal hypertension. I rarely get a day were I don’t feel pain in my stomach, back, shoulders or am dealing with the very annoying simple side-effects of liver disease like headaches, bloat, nausea, easy bruising, fatigue and nose bleeds. In March of this year (2012) my liver disease took a turn for the worse and I was transported by ambulance to my local hospital and then flown by helicopter to BC Children’s Hospital later as my liver specialist is located there. At first I was being checked for a ruptured spleen, internal bleeding and making sure my liver was functioning okay. The results came back and concluded that I had no ruptured spleen, internal bleeding and my liver was doing okay but I was still having severe pain and had a blood pressure of 176/126 , so something was clearly wrong. Unfortunately despite the many tests that were run they couldn’t find anything specifically wrong other than what we already know, my spleen is huge and pushes up agaisn’t my other organs, ribs and compresses my lungs. Eventually I was later released with more medications to take. Now we are discussing spleen reduction, though it is more riskier than fully removing my spleen it is very important that I have some spleen left. This may be the solution to many of my problems and sounds great but could potentially cause more problems as they surgery comes with many risks which are heightened as I have low platelets, portal hypertension, a very enlarged spleen and liver disease. Some of the complications are bleeding and blockage of the portal vein which requires another operation to fix – if we don’t catch the blockage in time your liver starts to fail and damage is done as blood flow will not be getting through. Ultimately it’s definitely not something me, my parents or my liver specialist wants to rush into, we are thinking it through. In a few weeks I have an appointment with a spleen specialist so we can all get a better look at my spleen and what it’s doing this may reveal something we didn’t catch on the countless ultrasounds and CT Scans I have had. Overall it sounds like a-lot but though I have spent my life going in and out of hospitals having procedures, tests, check-ups or those really simple things like ultrasounds and blood tests, I am in NO position to complain as someone out there is fighting for life.

Pic of Natalie at BC Children’s Hospital and pic of Natalie &  and her liver specialist, Dr. Rick Schreiber

Recently I have started raising awareness and funds for Biliary Atresia in hopes to find a cause, cure and make the world aware of this disease. I am president of my charity “Biliary Atresia Awareness and Research Society” and have reached over 30,000 thousand people through my Facebook page which now has 774 likes. My charity has come a long way in the 4 months since we started it in February and I cannot wait to see what the future holds regarding my charity as we go hand in hand. My goal for Biliary Atresia is to raise $10,000 dollars in 2012 and to become a leading pediatric specialist and researcher for Biliary Atresia as my career. I will be forever thankful to all those doctors who cared for me when I lived in the UK (I now live in BC Canada – have since I was 7) and a huge thank you to my liver specialist Dr. Rick Schreiber who is a leading specialist and researcher for Biliary Atresia in Canada and works at BC Children’s Hospital, and to those who continue to support/help me in my journey in making the world aware of Biliary Atresia! – Natalie Williams xx

This young woman is a true warrior and she is an inspiration to me! Her positive attitude and the plans and goals she has set for her future are nothing less than amazing. My hope & prayer is for Natalie to receive a second chance at life and to be able to meet each and every goal she has for her future! She is the “real deal” and I am so proud to call Natalie my friend…S

Please check out Natalie’s Facebook page: Biliary Atresia Awareness and Research.

And a little child shall lead them Isaiah 11:6

                                                 Natalie with her dog, Dixie

Last week, my son, Trevor graduated from elementary school with honors (sorry but I had to slip a little “mom bragging” in after all, I am the proudest mom in the world). “I” was there with my family for this milestone and believe me, I have been on my knees thanking God for allowing me to be able to share this milestone and for giving me this day, this precious, precious, memory with my family!

The icing on the cake…. the week before graduation, my dear friend Kim, gave me a gift that I will never forget, she offered for us to stay in her beach condo for a few days which I honestly did not think I would be able to accept for numerous reasons, one being that I still have “issues” accepting gifts of that magnitude from anyone also, Blake was scheduled to work offshore on the available dates and I honestly never know if I will have the energy to do anything at all on a given day and even on the good days, my stamina is next to nothing but long story short, everything fell so neatly into place… this trip was definitely meant to happen! Since Blake was scheduled to work offshore, Karma took off to drive me for a short “Mother’s Day trip”. So we had two wonderful  days with our children watching them play on the beach while I mainly slept in a rented beach chair under the shade from the umbrella and the warm, salty breeze off the ocean… the weather couldn’t have been more pleasant. Just breathing in that ocean air was absolutely the best medicine I’ve had in a LONG time… another precious memory with my son & my friend who is like a sister to me and who has been so very good to me and my family… I can only hope that I am as good a friend to those who have loved us through all of this. Yes, I am a lucky girl…although, I do long for the day to come when I have the energy to do all the things that I used to and to be well again etc. I’m not in complete denial, I do realize that his day may never come for me and that fact sometimes saddens me to the core if I allow myself to think about it and sometimes it hurts like hell  but I will continue to keep stepping!!

This is Bob’s story of hope in his words:

On Mother’s Day 1998 I suffered my first heart attack, the worst part was that I didn’t even know I had one. I thought it was just a bad case of the flu, I went to my family doctors two days later and that’s when he told me. On Thanksgiving Day 2008 I suffered my eighth heart attack and ended up on the operating table for a quadruple bypass and implanted an ICD ( implantable cardioverter-defibrillator). That sure made all those angioplasties I had earlier like they were nothing. I spent thirty days in ICU; I got out just in time to spend Christmas in a regular room. Four days later I finally got to go home only to end up back in the hospital three weeks later. After two more weeks in the hospital, they had me stabilized and sent me home. Then two weeks later I was back again, but this time they couldn’t stabilize my heart. It was April 2009 when my doctor came into my room and told me I was in end -stage cardiomyopathy and that I would need to have a heart transplant. I didn’t know what to say or do. I had already used up my health insurance and all our savings and I had only worked construction all my life, I didn’t know how I was going to pay the bills now, how would I pay for a transplant? They wanted $15,000 just to consider listing me for transplant. I applied for disability but we had no idea when that would be approved. Finally in August, my disability was approved and I was transferred 150 miles to UVA for my evaluation. After four days of tests, Dr. Bergin, my transplant doctor came into my room with a very serious look on his face and told me he had good news and some bad news. After nine months of being hooked up to tubes and wires I wasn’t sure I was ready to hear either one. I finally told him to give me the good news first. He told me that I qualified for the transplant but he felt I needed an LVAD in order to live long enough to receive the transplant. He said without the LVAD he felt that I would probably only survive another two weeks. Sept, 14, 2009 I had my LVAD surgery. After six weeks of recovery and training I got to go home. It took a little while to get use to it but I was glad I wasn’t in the hospital anymore. Now I had to wait for the call and hope I had time to make the three hour drive.

Bob with his LVAD

May 15, 2010 I got “the call”, it was Carol one of my transplant coordinators, and she asked me if I was ready to get rid of the LVAD. We drove the 150 miles in record time. When we arrived they started preparing me for my transplant surgery I don’t remember much after that. When I woke up I heard a strange sound, it was a heartbeat. For nine months all I heard was the hum from the LVAD, now I had a beating heart again. I ask God everyday to thank my organ donor and to watch over their family. I also thank God for having my wife Alicia to help me through it all and take care of me. I may not be back to work yet but I do talk with others that are just starting their journey and to help promote Organ, Eye and Tissue Donation.

Bob’s decision to hold on to hope and not give up when life was closing in on him from every direction is an inspiration. Bob is forever grateful to his donor and that he held on to hope for life. He does not take this gift of life for granted; he continues to be an advocate for organ donation awareness & utilizes every opportunity to help raise awareness for the need for organ donors! …S

If you can find a path with no obstacles, it probably doesn’t lead anywhere ~Frank A. Clark

Bob and his wife, Alicia

Loren was born on 12/24/87 and passed away on 1/3/2011. Her accident was on
12/18/10 and spent her Birthday, Christmas and New Years in a coma. She almost
came out of it once. Her childhood was spent with a lot of love. She was born
happy and smiling all the time complained only a handful of times. Mostly when
she was hungry.. ha ha. I called her the “bottomless pit”. She went to George H.
W. Bush Elementary and part of the original Challenger Kids when Mrs. Bush
showed up to dedicate the school. She also attended Bonham Elementary, and
Crocket Elementary. She was part of the GEM program back then (Gifted Education
Midland). Chosen for their high grades, attendance, etc. She wrote her first
article in their newspaper (The Flying Times Express) in Dec, 1999, 12 years old
at the time, titled “On His Way”, about a 17 year old she interviewed that made
the National Merit Scholar list and he ended up going to Rice University. By year
2000 she had already received numerous awards. Honor Choir (sang in our church
choir too while my son Eric played the violin), Number Sense Club, Science Fair
finalist, Stings club, Perfect Attendance. She attended San Jacinto Junior High and
graduated for Midland High. She only took a few basic classes in Midland Junior
College, due to full time job, but had considered transferring to San Antonio
and continue to with work with their assisted programs with the “Maximus govement call center”
where she was a supervisor. Helping people who need government assisted help such as
health care, food stamps, emergency relief. She helped many Katrina victims and she
loved that job. She was musically talented like most of our family. She played
the Viola, Bassoon (called the instruments of the Gods), and the Cymbals during
band marching season. She worked during High School years, At Ci Ci’s Pizza,
Kohl’s, Olive Garden only because she wanted to….she was so energetic. After High
School, she continued to work at Maximus Call enter & Best Buy. Our proud moments with Loren??… EVERYDAY…She was in
the Girl Scouts as early as a Brownie and continued as a Girl Scout untill her Junior year in high school.
She was active with the youth group at St Ann’s Catholic Church, from fund
raisers to Christmas Caroling. Both she and my son would go on ministry
trips in central Mexico with my cousin Martha, founder of “Flames of Love
International Ministries”. They took food, clothing and money, Slept on dirt
floors. She would help me purchasing gifts to orphaned children when my job
would sponsor “The Wishing Tree” for Christmas. She had positive effect on many
as an adult and as a teen, that is why her Rosary (viewing) and funeral mass
was standing room only… She loved drawing, writing (she wanted to be a writer),
singing, kids, animals and even insects. She is missed, but she earned her
invitation to Heaven early for doing all she was expected at such an early
life… Alex

The following are links to 2 video clips and 1 newspaper article of news stories regarding Loren’s gift:

http://www.youtube.com/watch?v=tFQyJ2jvY4w

Organ Transplant Brings Family, Recipient Together In Odessa: http://permianbasin360.com/fulltext?nxd_id=178262

Link from front page article in Midland TX newspaper on meeting Keenan: http://www.mywesttexas.com/top_stories/article_3d84daf0-4c98-52b6-9c28-68d17c5dd4bb.html

The following is a poem that I originally shared a while back but at the time I didnot know the name nor the author…I love it & I have always called it “The Bed Of Life”?… Alex posted this poem today and the actual name & author is To “Remember Me” by Robert Noel Test (1926-1994)…please read this…it is awesome…S

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to the one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

I had several weeks to prepare but for some reason, I waited until the last minute to prepare and I found myself on the afternoon before trying to figure out what exactly I would say. I was not feeling well and as I looked at my blog for inspiration, the negative thoughts that I normally try so hard to fight, started creeping into my mind…”I do not need to do this”…”no one cares about organ donation”…”I am not well enough to do this”….”this is too much to ask of Karma who has done so much for me already”…”what if I get sick in front of these people” ….” Is anyone really benefiting from “Faces of Hope for Life, why am I even wasting my time??” As these poisonous, negative thoughts began to overcome me, I pulled up the video footage in the story I posted about Kelli “With Every Heartbeat” where the parents of Kelli’s donor were able to hear their deceased daughter’s heartbeat in Kelli’s chest with a stethoscope…. I love this footage because in my opinion, it is such a great example of the impact that organ donation has on both the recipient and donor families. After watching the footage, I went into my kitchen for a glass of water & checked my cell phone…there was an email from Rev. Duckworth… she explained that this past December, the church lost a 21 year old member in a very tragic way and her mother, Cathy made the decision to donate her daughters organs. She said that Cathy will be there the following night & had requested to speak with me after my talk. Wow, I was blown away to say the least! This was definitely a “God wink” and all of the negative thoughts left my mind immediately.

Well, Karma and I made it to the church and received a very warm welcome from Rev. Duckworth and the church members. I  rambled through my spill about the need for organ donors and afterward, I received so many hugs and kind words of support and a few members told me they were already organ donors and others vowed to become organ donors… I felt so much love in that room! As everyone slowly made their way out, I found Cathy and we sat for a few moments…we shared a few tears and she handed me a piece of paper to open later. She had already heard from some of the recipients of the life saving organs and she wanted to discuss a few things about her experience but her main focus was on a memory book of her daughter that she was preparing to provide to the recipients so they would know something about the person who gave them a second chance at life…. she wanted to make sure that she included things that they might want to know…wow…Cathy had already given these people an incredible gift but her heart is so big that she was thinking of the recipients of LIFE that she helped to give them…all I can say about Cathy is that she is a beautiful person, she exemplifies Grace and in the depth of her grief and sadness over the loss of her daughter, she is now trying to make a difference by sharing her story and raising awareness.

It took a few days for me to open the paper that Cathy handed me… it was a copy of the letter from the recipient of her daughter’s liver thanking her for the gift of life and allowing him to be able to provide for his wife and 4 children. After reading this, I cried…I cried in shame for almost giving up and I cried in grief for Cathy’s loss and I cried in joy, knowing that there is light at the end of this journey and this man is alive and will be able to provide for his family and enjoy many memories.  I was very tired after this night & spent a few days in bed recovering but I wouldn’t trade it for anything in this world! My life was touched by my new friends at Grace United Methodist Church – I was so humbled by their hospitality and I am forever grateful to them all. I learned a lesson that I “thought” I had learned a long time ago but I guess we all continue to grow and learn throughout life and we all slip from time to time & I was definitely slipping on the day before my speaking engagement… I almost let the negative thoughts take over but thanks to his grace….God winked!!… S

Me with Reverend Duckworth

Scott Linscott was enjoying a family vacation in Orlando Florida in May 2011 when his life took an unexpected path. One day he was riding a roller coaster at Animal Kingdom the next day he found himself in a hospital bed receiving news that would take him on a ”real life” roller coaster that continues to this day and I can attest to the fact that this journey truly is a roller coaster. You may be up one minute & at the lowest of lows the next – you experience every emotion imaginable randomly and intensely. When I started reading Scott’s writings, I was amazed at how similar his journey is to mine & I guess that is why his writings hit so close to home for me His positive attitude and his sense humor radiate through his writings. After receiving this life changing news, Scott made a vow to write about his journey and to write about it with “complete honesty” no matter how difficult. This is something that I have struggled with in my own journey of hope…I tend to avoid sharing my”true feelings” on the days when I am struggling and do not feel like I can possibly go on. But after reading his writings which took me from laughing until my cheeks hurt to weeping so hard that I could not read & back again. I am so grateful that Scott made this promise and kept his word because his story has provided me with a connection to my own struggles and allowed me to believe that my feelings, fears, and emotional pain are normal and it is okay. His raw honesty brings emotions to the surface for me and I am so glad he has kept such an honest journal of his path…S

Scott & wife, Robin

The following are excerpts of Scott’s writings while on his journey as he continues to hold on to hope for his second chance at life:

5-8-11 – One doctor says I’m dying, another says I have time… I have no idea what this means. Do you know what can change your focus in just a few seconds? I do. This past week in Orlando, Florida, I had a doctor stand by my bedside and tell me that “apart from something major” my life would soon be drawing to a close. She told me that the CAT scan of my lungs and abdomen showed that my liver is “shriveled up and dying fast.” My belly is filling with fluid and compromising my lungs. She told me I should do whatever I could to get on a transplant list immediately. And then, she walked out of my room without a second glance. I laid there stunned. I have known that I have a condition called Fatty Liver Disease or NASH for several years. I have had annual checkups and scans showing no decline. Now, suddenly since March, my liver has gone downhill rapidly. I don’t know why. All I know is that I now am in serious enough condition that major changes have to happen.

Major changes…
First, I need the rapid decline to slow down or stop to give me enough time to get on the radar screen at the Lahey Clinic in Boston to be assessed for a transplant. If I am a good enough candidate, they will begin monitoring me closely and place me on the national list with approximately 17,000 others awaiting a liver in the United States.

Second, if the Lord grants me the time, we begin looking at the transplant process. I cried many tears on Thursday. My pain mostly came because I was so humbled by the love my family and closest friends started heaping on me. My sisters debated which of them was the best candidate to donate part of their liver. My children searched the internet to see if they could donate. My nieces and nephews called and texted and our best friends were ready to hop a plane to join us in the hospital that night. My oldest sister rushed in ready to give me part of her liver that afternoon if they would do it. All I could do was cry with my wife while seeing and picturing all the grief I was causing the people who love me. I started a letter to my Shara begging her to celebrate her wedding even if I wasn’t there but I couldn’t finish it … I think this might be less painful if I was alone.

I look at the transplant costs ranging from $300,000 to half a million dollars. That money could feed thousands of children, dig numerous safe wells or advance the love of Jesus in numerous communities. Truthfully, though I know the people who love me will disagree, I doubt I am worth the effort or the money. I think there are better investments. I am ready to die … I’m not ready to cause my loved ones so much pain. If I could spend $300,000 to spare their pain, I would. So, I will, if the Lord grants me the time, get on the list.

Third, hope. On Friday morning I spoke with another doctor who told me that while my liver condition requires me to take steps to get a transplant, he sees that I may not need a transplant for a year, 3 years or more. Guess which doctor I am deciding to believe? Yes, Friday’s doctor! I will see my liver doctor this week if he can spare some time to evaluate my life and am hoping he is of the same mind as Friday’s doctor.

Back in that Florida Hospital bed in the middle of the night when I awoke with two strong impressions that I don’t know if they were in a dream state or audible, I sensed a God thing. Did I see God? Thankfully, no. Was my room filled with light? Still no. Did I feel a weird warmth? No. I’m sorry. There was nothing Hollywood about it. It was just a very, very strong impression that woke me up…I know … weird stuff … the stuff of which fruitcakes are made. We’ve got TV people telling us God talks to them, preachers who say they shave with Jesus and kooks telling us the world is ending on this date or that.

I talk to God a lot. He doesn’t talk to me. I hear from Him through my bible and the encouragement of friends. I see Him in nature and beauty. I see His heart in people adopting children out of horrific conditions. But, He doesn’t talk to me. If He was always just showing up blabbing on and on about this and that, I imagine it wouldn’t take long for it to be commonplace and I’d start looking at it as … well … “blabbing.”

There was something entirely unique about that hospital scene. It is etched in my memory. One of the things He said was, “I want you to write honestly about this.” That’s my commitment through this journey. When I am discouraged, I’ll write it. Upbeat? Positive? I’ll write. Scared? I’ll write it. Strong, weak, neat, messy, angry, happy, nervous, tired. “Write honestly.”

People tell me to be strong. Is that something you can just flip a switch and do? If it is, someone please show me the switch.

I’ve heard, “Don’t be afraid.” When or if I get a transplant, they will cut me open from the left to right, remove my shriveled organ, put a new one in with several shunts draining from my body, have me on a machine that breathes for me and put a tube up my … yeah, you know … into my bladder.” I’m not supposed to be afraid of that? Well, I am. If that means I’m weak in my faith, it is what it is. My bible tells me about a lot of people who were afraid. If people weren’t afraid, God wouldn’t have said, “Do not be afraid” so often. I’m afraid. But, I do hear my God whispering, “Shhh, do not be afraid.” He does it with the compassion and love of a parent rocking a child back to sleep after a nightmare. He’ll hold me and tell me over and over again until I drift off into His peace. Right now, like that child in His lap, I’m still scared of my nightmare. He is so very patient.

5-9-11 – Weeping big tears…Tonight I cried. I cried hard. I talked to God and asked Him all the things you might expect: why me, why now?

I recited the 23rd Psalm hoping for comfort. Instead I kept choking on the “valley of the shadow of death” part. I shall fear no evil? No, I’m not there yet. I am terrified by parts of this transplant story.

Even though it was close to 1 AM and I was hiding downstairs on the couch so as not to awaken Robin with my infant-like bawling, my daughter came into the kitchen for a drink and spotted me. I suppose the box of tissues and the tear-soaked tissue balls on the floor tipped her off. She sat down by my side and leaned her head on my shoulder and my waterworks started anew.

I talked. I sobbed. She cried. She said, “I love you, dad” and we wept together. Wow, what a strong man huh? Crying in the arms of his daughter. Sheesh. I apologized for being such a mess and we laughed. We talked about her upcoming wedding and I gave her a blessing like the Hebrew men of old gave their children. It was a sweet, sweet time for me. She went back upstairs to study for finals and I found myself praising God for bringing her down for a drink. God is good.

I will be able to say “I fear no evil” at some point in the days to come. I know it. But tonight I am so thankful for my Lord who holds me and listens to my heart. I know He has plenty of time for me to stretch and grow and discover yet another level of His extravagant, life-giving grace. Now at 2 AM I am ready to sleep. Soundly. Peacefully. Safe in His arms.

Lord, thank you for tonight. I feel like George Bailey in “It’s a Wonderful Life.” People all over the place have joined the battle in prayer.

~ “Dear George, remember no man is a failure who has friends.” ~ Clarence Oddbody

I am blessed. I have lived blessed. No matter what the future holds for me, God has blessed me with a wonderful life

I wish I had answers. Tomorrow I will be speaking with Lahey Clinic to schedule our transplant journey beginning. Today my liver doctor called to encourage me and tell me he is ordering labs to watch out for my kidney function because of the diuretic I am on to drain fluid from my belly. On Wednesday my general doctor is managing to squeeze me in to see his nurse practitioner because he is far too busy to see me. (Yes, you can sense that I am angry about that!) But, I know nurse practitioner Kait and am comfortable with her. She will check my pneumonia and I will demand an x-ray to see that my lungs are clearing. Last time they told me I was clear and did not order another course of antibiotics. I’m not accepting that this time. I think I’ve developed a little bit of an aggressive attitude today.

5-15-11 – This liver transplant thing sure is making me see things differently! Someone said, “I can’t believe you’re dying.” I looked at them and remembered one of my favorites, Matt Chandler, and how he responded to that. I said, “So are you, I just might have a little better grasp on the timing.” Wow. Chandler is right. The death rate is 1/1, or 100 percent. I really am sensing that the Lord is giving me time to get a transplant … or even heal me. But, eventually you and I will die. My challenges are opening my eyes to look back at my legacy. Have I contributed?  Impacted people? Invested in more than stuff? Have you? I want to invest in the stuff that matters.

5-19-11 – When everything flashes before your eyes… Believe me. When that doctor came into my hospital room May 5 and told me my liver was worthless and that I didn’t have much time left, my thoughts immediately went to my family. I didn’t think of my house, my career or any of the stuff that clutters my world. They say your life flashes before your eyes. It does.

First, I thought of my wife. She’s been my best friend since 1982. I can still see her coming down the aisle on that rainy June 2, 1984 afternoon. I can see her looking into my eyes and pausing in a moment of panic when she forgot her vows. I remember our kiss and the way my heart felt like it was going to explode as we walked past our friends and family as husband and wife. What would she do? How would she live? My life insurance was the first casualty of this liver disease. She wouldn’t even have enough to bury me.

Next, I thought of my daughter’s upcoming wedding July 2. Would it now be a day of mourning instead of the celebration we’ve been planning? I thought of her standing in her snow suit on top of a snow bank at 5 yelling, “I love daddy!” at the top of her lungs and listening for the echo off the nearby courthouse. I remember her refusing to take a break while learning to ride her bike and through determined tears saying, “No! I WILL do this!” I thought of the cold bleachers and the hours and hours cheering for her as she played field hockey. What would she do?

Next into my mind came my Jacob. “I got the rug burn,” he would tell everyone when he was about 3 and had a scab on his nose. He rubbed his nose raw on the carpet while we were on vacation. I saw him dancing on second base with his helmet on crooked while he used his knuckles to knock on his athletic cup keeping a beat. I thought of him making us laugh and laugh like third-borns usually do. I thought, “He can’t let this take him off course. He will finish culinary school, won’t he?”

And then, my Josh, my first born. I remembered him learning to walk at the back of a camp chapel while I encouraged the people there to give Jesus a chance. I remember playing “Hook” pinball and us yelling “Bang-a-rang!!!” when we’d go to the game room at Attitash when his little brother and sister went to bed. Buckets and buckets of baseballs, his first home run and driving hours watching him play the game we love. The concerts, the road trips and the pride seeing him graduate with honors from Bates College. I saw them all like a movie. “Lord, I want to see him graduate with his PhD.” Parents, sisters, relatives, friends … how would my death affect them? I couldn’t even think without weeping.

Dads, can you picture it? None of us want to cause so much pain to the people we love but we’re always putting our health off until “later.” I beg you to understand that investing another hour at work instead of going to the gym to shed those extra pounds will not matter one bit if you find “doctor death” (as I like to call her now) giving you news that will take your breath away like a lineman driving his helmet into your ribs. We have to take care of ourselves for the people we love. Go get the physical. Try a salad. Go for a walk, ride a bike, play tennis, move … please stop putting it off. The people you love are the only thing that matters. To live is Christ. To die is gain. Paul said it. Mentally, I know what he meant. Emotionally, I am not yet at the point of embracing it. There are far too many people that I love deeply. I’m praying for hope. I’m praying that I will go through whatever is ahead determined to glorify God and share His love. My MELD number is currently 17. (15 gets you on the list) But MELD numbers can change quickly. We’re praying that as my pneumonia clears, my MELD will drop too.

God is good regardless of the outcome of my journey.

1 Peter 5:7 Cast all your anxiety on him because he cares for you.

6-12-11 - My life is too short to:
1) Play church when faith is so real.
2) Miss a moment with the people I love.
3) Convince myself that I am too busy to exercise.
4) Drive past a sunset or fail to smell the flowers.
5) Hold onto a grudge that eats away at me.
6) Let needs of others go past without helping if I can.

Sure, there’s stress. There’s thousands of dollars of medical bills piling up. There’s our house that no one wants to buy. There’s the unknown of tomorrow. But today? Today, I’m going to live. I’m going to love. I’m going to trust my God.

If you are on the transplant journey, awaiting a liver, a heart, a kidney, a lung, I understand what you are living with. We’ve read statistics telling us that 20-30% of people awaiting transplants die waiting. We watch the numbers on blood tests and we now use terms we never knew before. We tell our story over and over. It can be exhausting and discouraging. Instead, choose to LIVE! Make the most of every moment.

I’m going to dance with my precious daughter at her wedding on July 2. I’m going to hold her tight and treasure every second. And yes, we’ll be dancing to a country song too! Unfortunately, she won’t let me wear cowboy boots. (Heartland, “I Loved Her First.” )

9-15-11 – I hesitate to publish this one but I was reminded that I started writing honestly in the blog and vowed to continue. It’s me. Right now. I wrote it responding to an email from a past student this morning and share it with you. I’m not sure what good it will bring and I fear it’s discouraging, but it’s me, right this moment.

How am I feeling? One word – bruised. I just feel beat up and defeated right now. My Jesus is so close but my body is failing so badly. Right now I am losing the physical battle. That sucks. As a man, I want to provide for my family. I can’t. As I husband, I want to be strength for my wife. I am weakness. I want to be consistent for my kids but I am total confusion. For others, I want to serve and love, but I lie here being served and loved. I am so very blessed by so many friends who used to be my youth group kids. The church of Jesus keeps pouring love on me. It’s an amazing thing. It’s humbling and difficult but still so very, very good. So there you have it. That’s me right now. I’m in a battle I am too weak to win on my own. Thankfully I am far from alone. As I lie here posting this, my sister Gloria is happily waiting on me hand and foot. She’s cleaning the house, giving me pills, making me tea, disinfecting and giving her time, yet again, to care for her baby brother. Maybe she’s trying to make up for dropping me on my head when I was a baby. Or, was that Gail? Either way, both my sisters are amazing.

9-20-11 - I’ve never been this low before. I’ve never begged God just to take me before. Now I have. My decline has been steady since March. I’ve read a billion encouraging notes and words. Now I just try to smile and say, “thank you.” I have people praying for me around the world. I’ve cried more tears than I thought possible. I’ve been unable to speak. I’ve wept in front of strangers and friends. I’ve wept with my wife and family. I’ve watched my mom and dad’s hearts breaking. I’m weeping now. I’ve tried to be strong but I am so very weak. I’ve reached the point that I don’t have hope that I will recover but I do have Hope in my Jesus. I am looking forward to being with Him, pain-free, with my new body. I have been healed by His stripes and my future is secure. I am so tired I can’t even think about a transplant. I am watching people I love suffer with me and I hate it. I would do anything I could to take their pain. Jesus loves me even more than I love them. For the first time I think I understand why He takes our suffering on Himself. Unspeakable love…Some of you will be angry reading this. I know. I’m sorry. Honesty.

9-24-1 – 1 I hate my couch…I have a nice, comfy couch. We used to have a good relationship. I was anxious to see it, pull up a pillow and snuggle in to watch my Red Sox crushing opponents. But things have changed between my green couch and I. We spend far too much time together. I no longer look forward to seeing it and I am sure, by the muscle aches and tender spots it now pushes on, that my couch dreads seeing me coming. But, we’re both stuck here. Things have changed. Everything has changed. Now, this morning, I will soon go from lying here in bed to the dreaded green couch where I will spend most of my day eating pills. If I endure, there’s a long, hard road of a liver transplant ahead. I Googled “ascites” and “liver” yesterday to read that there is a 30-40% 5-year survival rate after ascites fluid appears. That means 3 or 4 people who develop ascites are still around 5 years later. Google is more evil than the Yankees.  In 5 years I would be just 53. I might have a grandchild or two. I might get to celebrate another wedding or two with my sons beginning new lives. A lot can change in 5 years. Heck, in five years that wretched green couch will be in the recycling stream somewhere. I think I’d like to see it dragged away. New liver, new energy, new couch and a return to independence? I certainly hope that’s what my future holds. Tee-ball games, dance recitals, a vacation with the love of my life not needing to maneuver a chair around corners. Watching my kids get their doctoral degrees, celebrating the opening of my son’s new restaurant by ordering off the menu… I want to be here to join in. Life is such a gift…Sure, I know, heaven will be great. But you know what? Life is pretty great too.

2-26-12 Some things are happening but not too much to report. Some great news, some frustrating news and some struggles … but that’s how liver disease works…

First, my health. I am still struggling to learn my limits. Some days I feel great, almost like I don’t have this terrible disease. For example, last week Monday thru Thursday I felt human, a slow-moving human but human none the less. Thursday I did a few errands and then went to the Apple Store to replace my defective phone. I got there at 11:30 and it was nearly 2:00 when I finally left with my new phone. It was a long day. Then, Friday I was miserable with a fever, nausea and pain. Saturday, I felt somewhat better but laid low doing laundry for the day. Sunday, I am back to the land of the living and Robin and I were able to attend a pancake breakfast fund raiser. Is my activity limit only 3 hours? I’m frustrated. On days of suffering I ask God why He is making me wait. No answers. Silence.

The good news:
First, God has met ALL of our needs. People are so loving and generous. Second, our family has grown! Our little Shara married an awesome guy who fits right in with our crazy bunch. I was so thankful to be alive and able to attend her beautiful wedding celebration. I even had the privilege of officiating and pronouncing she and Jake man and wife. What a great family celebration!!! Third, Chef Donald Jacob finished year one at the Culinary Institute of America. We saw a tremendous growth in his knowledge and skills. YUM!!!  He also secured an internship working in Maine’s only 5 star restaurant, the White Barn Inn. It was grueling and just as abusive as those cooking shows on TV but he survived it. We are so proud of him. Fourth, Josh finished year one at Weill-Cornell Medical School in Manhattan. He got honors throughout and was top of his class. He even coached Little League! Amazing. Fifth, Robin’s job at Boyko is a blessing. Her boss blessed us with health insurance for 2012. It’s a very good policy. She has the flexibility to work at home and take me to my doctors appointments. She continues to amaze me by all she does. Now she’s even tutoring children in reading at The Root Cellar, an inner city ministry in Portland.

The coming year will be a year of struggle and victory and growing in our faith. New house, new liver, new beginnings. On January 31^st, I will find out if I am a candidate for a live donor and if so, I will be transplanted in 2012. If I have to wait for a donor liver, I will have to become much sicker before I move up high enough on the list. I know of others who have waited for years. In my support group just in the last month, 3 people died waiting. THIS SHOULD NOT BE! Too few Americans are registered organ donors.

Scott continues to battle the cruel effects of progressive liver failure. He has been in & out of the hospital for the majority of the past two months and was recently re-admitted on his 49^th birthday for further testing and medication regulation. On that day, Scott posted pictures of his “nice” hospital accommodations & enjoyed a Birthday cupcake from his hospital room to celebrate the day…wow, this guy really knows how to make the best of a situation!…Scott wants to live & whatever it takes, he is going to do just that. He makes every effort to make the most of his “new normal” each and every day and he continues to glorify God with his “truth” even during the depth of pain and suffering…S

I invite you to join Scott’s journey –  you will not be disappointed…his writings are filled with raw emotion but he always finds a way to make the reader laugh as only Scott can do:

Scott’s Website: www.scottlinscott.com My Liver Transplant Journey: drinking from the same dipper~ True followers of Christ are not afraid to share life with others.

Scott’s Face Book Page: Scott Linscott’s Liver Transplant Journey

”Teach me. Shape me. Use me to glorify your name.
No matter what happens. Help me point others to you.”-Scott Linscott

The following link is a “you tube” video that Scott posted on his blog of one of his favorite comedians about a trip to the Emergency Room. I laughed so hard watching this & I couldn’t resist adding it because it exemplifies Scott’s never ending sense of humor…if you have ever been fortunate enough to visit the ER, you will probably be able to find the humor in this one…it is so funny…S

http://www.youtube.com/watch?feature=player_embedded&v=cP4zgb9H3Cg

Update: 5/7/12 Scott received a life saving living donor transplant today! His son, Josh was found to be the perfect match to be Scott’s living donor so they underwent the transplant today… prayers for a swift and smooth recovery for them both!

Riley was born with Heterotaxy Syndrome and Complex Congenital Heart Disease! He has been waiting for his GIFT of LIFE since November 2, 2009 when he was “officially” listed for a Bilateral Lung and Heart Transplant. This past February 20^th, Riley had his 20th Cardiac Catheterization…and as this story is being published, Riley is preparing for his 21^st… I met Riley’s mom, Carol on an online transplant site a while back and from the moment I read Riley’s story I was completely taken aback by this family’s unrelenting courage and strength! I simply cannot imagine going through this journey with their fighting spirit! This family is acutely aware that Riley’s survival rate is only 20% to live to age five and that a Bilateral Lung and Heart Transplant is his only hope for survival and the bitter reality is long term, the odds are NOT in Riley’s favor. But these people are “warriors” and they will continue to hold on to hope for their son! There is not much rest for parents of a child with congenital heart defects…they are constantly juggling procedures, doctors appointments, medications, tube feedings, and oxygen levels …the list is endless! In addition, Riley is simply a little boy who desperately wants to play outside, take karate with his older brother, play ball,  he loves Thomas the train & other toys so his parents make every effort to ensure that Riley’s life is as normal as possible!  I am so inspired by the courage of this adorable boy & his loving parents. Riley’s mom Carol, in my opinion, is one of the strongest women I have ever known…she inspires me daily with her courage and strength! This is a quote from Carol: “I would have never believed two years ago that Riley would still be here today still waiting for his Gift of Life! He has out lasted every other child he was once listed with on both the heart and lungs wait lists… unbelievable! I have to believe that Riley’s Time will come when EVERYTHING is perfect for him to receive His Gift! This way, not only will he receive the Incredible Gift of Life but the ability to use that gift to the fullest to live out a long, happy, life”

This is Riley’s story told by Riley’s mom, Carol:

I was told that Riley had Heterotaxy Syndrome and Complex Congenital Heart Disease when I was 22 wks pregnant.  This was when I was sent for a third ultrasound, a Level 2.  The doctor who told me the news was not very positive.  He said that babies that are in Riley’s situation do not fair well.  He gave a survival rate of 50% to live one year. I certainly wasn’t expecting this news.

The following day I contacted Children’s Hospital of Philadelphia (CHOP) for a second opinion.  They set up an all day evaluation that consisted of an ultrasound, an echo and then a meeting with a team of doctors.  They, too, said that Riley’s case was very serious, but they would do everything they could to help him.  They said he would have to have a three stage procedure to try and fix his heart, but that his biggest issue was going to be his Pulmonary veins…  they were going to have to be re-routed during the first surgery, and they were very narrow.  They weren’t even sure if they were going to be obstructed at birth but if they were, he would need immediate surgery.

Riley also had a CCam in utero.  That was discussed at the meeting, but luckily it got smaller in size, and we have not had to address it. We discussed that he may need the Ladds procedure if he had malrotation, but that couldn’t be fully diagnosed until after delivery with an upper GI.

It was also decided that it was better for me to deliver at University of Pennsylvania, next door to CHOP, in case his veins were obstructed at birth.  I was also scheduled for an Amniocentesis.  They wanted to rule out any deadly Trisomy’s, so we knew that we could move forward with the plan of care.  I transferred all my care to CHOP the next day.  I went every 2 wks and had an ultrasound, and an echo every fourth week.  It was very emotional to say the least.  I was preparing to have a baby that they couldn’t even tell me would live.  I dreaded every echo.  It was always the same bad news about his veins.

Finally they decided to induce me on April 4^th, 2008.  I was due April 25th.  They took Riley from me immediately at birth.  I did see him for about 2 minutes when they wheeled him down to my room on their way over to CHOP.  Once at CHOP, Riley went directly to the CICU.  Luckily his pulmonary veins were not obstructed.  They ran all of their lines through the umbilical cord, and hooked him up to the heart monitors, gave him some oxygen, and then we waited.  On the fourth day he went in for Stage one surgery as planned.  He had a BT Shunt placed, and his veins were repaired.  He then spent about a week in the CICU before heading down to the CCU.  While in the CCU it was determined that he did in fact, have malrotation, but that the Ladds procedure would be discussed later.  Riley first came home from the hospital after 2 weeks.  He briefly had a NG Tube for feeding, but that only lasted a few days until he pulled it out.

I knew once we were home our next dreaded appointment would be an echo.  Sure enough in June, Riley had an echo and it showed that his veins had some obstruction.  They sent him for a Cardiac Catheterization about 2 weeks later.  While in the Cath Lab it was determined that Riley’s veins would need be repaired again surgically.  The doctor also made sure to tell us that Riley having Heterotaxy on top TAPVR, which is the vein obstruction, made things very difficult, and hard to repair.  In July, Riley went in for his “Sutureless Repair” surgery.  This was now his second open heart surgery.  The surgeon believed that the surgery went well, and that the blood was flowing again.  At that point he believed we could head toward Stage 2 of the surgical procedures around December, however, he could not guarantee that the repair would hold, and that Riley would not form scar tissue that would again cause obstruction.  All we could do, though, is move forward.  Riley spent about 2 weeks in CHOP after surgery.

Then we went home, again, until the next appointment.  During this time, Riley’s meds were increased continuously.  He takes antibiotics for the lack of spleen from the Heterotaxy and he takes several heart meds.

Around the end of August 2008, Riley had another echo.  Would you believe that it showed obstruction again?!  Our only option at that point, was to back to the Cath lab.  There was nothing more surgically that could be done.  Two weeks later Riley had another Cath.  This time a “cutting balloon” was used to try and open Riley’s veins.  It was once again successful, but once again there was no promise that it would hold.

At this point, things are not looking good.  Nothing can be done to Riley’s heart or his abdomen unless his veins are stable.  So everything is on hold.  Again we go home.  All this time that Riley is having vein issues he is also having severe reflux issues…. vomiting all the time, he is below 5 percentile in weight, he is taking meds for reflux, but the issue is not resolved.  They may surgically address the reflux but again but, they can’t do anything if the veins aren’t stable.

The end of October 2008, Riley had another echo.  Unfortunately, the obstruction had returned.  Our only option was to place stents in the veins.  Riley went back to the cath lab mid November 08.  During this procedure he had stents placed in three of his four pulmonary veins.  The doctor told us that this was pretty much the last option.  If the veins obstruct again with the stents they will balloon them, but they will not continue to do that if it’s not working.

In December 2008 Riley decided that he didn’t want to eat any more so in January 2009 he had to have a G-Tube placed to assist him in his feeding.  The surgery went well we had a couple minor setbacks, like the G-Tube fell out the day after surgery.  But as of now, he has the tube in & he is feeding well, slow, but well and gaining weight and that is what we hoped for.  In addition, to the placement of the G-Tube, they also removed his appendix and they took out his intestines and put them back in, I would like to say the correct way,  but they are the correct for Riley.

The stents have been holding to date.  Riley’s echo on February 25, 2009, showed an obstruction.  We were very sad.

In March 2009 – they did another Hearth Cath they used the cutting balloons on 3 veins and they put a stent in the 4th.

Carol with Dr. Rome who has performed all 20 heart catheterizations on Riley & Carol suited up to go in to kiss Riley before they sedate him…

On April 29, 2009 – they did another Echo and two veins are obstructed so now it’s off to the Cath Lab for another Hearth Cath and cutting ballons.  They have spoken a little about a transplant but with is veins so unstable that still seems to be an issue to have him listed at this point.

October 2009 – Well, we have come to that point, the place we had hoped we would never be, Riley’s only hope is a heart and double lung transplant.  We had hoped it wouldn’t come to this because the survival rate is only 20% to age five.  But, transplant is Riley’s only hope since his veins are failing.

 November 2, 2009 – Riley is “officially” listed for his heart and double lung transplant.

Dr Spray has performed both of Riley’s open heart surgeries and will be the one to perform his transplant.

November 2, 2010 – Riley has been waiting for transplant for one year.

November 2, 2011 – Hard to believe it but it has now been two years that Riley has been waiting for his gift.  Over this past year we did have 3 dry runs for organs but it wasn’t Riley’s time yet, so after another year of having a heart cath almost every 8 weeks we continue our wait.

“It is so hard having two children when one of them is fighting the odds now and will continue to fight after transplant to stay alive! Riley starves for the attention of his older brother, the minute he walks into the room they are like any other set of siblings. Riley desperately wants to be just like his big brother but in Riley’s case, this is simply not possible…heartbreaking for mom & dad.

Please continue to pray for Riley as we begin a new path on our journey. Riley is a beautiful child that deserves a chance at life.  It is too soon for him not to be here. We have to keep praying for a Miracle. 

Most congenital heart defect children don’t look sick. You can’t tell them apart from other kids, but their scars are very real. Most have faced more in their short lives than any person should. Congenital Heart defects kill more children every year than all childhood cancers combined. Beneath their shirts are battle scars, constant reminders of their battles to live. They have a strength, courage… and resilience that we can only be amazed by.

Every 15 minutes a child is born with a CHD. That means every 15 minutes a child must begin to fight to survive. That means every 15 minutes a new family must begin to rely on doctors, nurses, modern medicines, procedures and surgeries to keep their child alive.

The name of Riley’s website is “smile4Riley”…and it is very fitting…I mentioned earlier that Carol, Riley’s mom is one of the strongest women I have ever met and it is true. You have probably heard the saying, “You never know how strong you are, until being strong is the only choice you have”. Well, Carol is a prime example of this because a mom has no choice but to fight for her child. Carol and Darren have to fight to keep their composure & hold back the tears each and every time their son is crying as he endures another painful procedure or when he is being prepared  for another surgical procedure, or heart catheterization (and Riley has complications – severe allergic reactions with each and every heart cath – these reactions get progressively worse with each cath although his physician team makes every effort to prevent these reactions,  he must be admitted to CICU after every heart cath). Carol and Darren fight the tears and “push through” each and every situation when in the back of their minds, they know the uncertainty of it all… through it all, they have to continue to “smile for Riley”!  As I spoke with Carol, her voice is strong and she is very articulate and “well read” and she explains Riley’s journey with clarity and strength in her voice but when she had a moment without kids in the room and she was speaking about the “bitter reality” of Riley’s prognosis, her voice cracked and she began to cry for a moment but she quickly regained her composure as I am so sure she has programmed herself to do over the years of living through this and as I listened to her…tears rolled down my cheeks because I simply cannot imagine what it must be like to walk in her shoes… and I certainly can’t tell her that I know how she feels because I have no idea how she feels… I found myself with no words to comfort her… I am left speechless! I can only imagine what it must be like for Riley’s parents and extended family as they wait anxiously for the phone to ring as he has been through three “dry runs” with potential donors since being “officially” listed for his life saving, Bilateral Lung and Heart Transplant in November 2009. Yet, every time 215-590-XXXX appears on their caller ID, their hearts literally drop although most times it is a call verifying pre-procedure instructions for Riley’s next procedure, heart catheterization, surgery, etc. But, one Day…. That call will be worthy of their hearts dropping as he will be going in for a new set of lungs and a new heart and it will not be a “dry run”…. this is at least what his family prays for each and every day… Carol jokingly says “ Riley will be 4 years old on April 4th….hmmm….he had his 20th heart cath on the 20th so maybe he will get “The Call” on 4/4 when he turns 4“… Carol & Darren will NEVER give up HOPE although they are acutely aware that there is a shortage of organs and with Riley’s small size, the chances could definitely be better, these dire statistics only fuel their fight for their sweet son, Riley…S

Click on the link below to see a very moving video shot recently outlining Riley’s journey of life on the waiting list. This footage was shot during Riley’s last heart cath:

http://www.courierpostonline.com/VideoNetwork/1494439528001/Riley-O-Brien-Life-on-the-Waiting-List

Click on the Link below to see Riley’s mom speaking at CHOP about Organ Donation:

http://www.youtube.com/watch?v=ZSW2URPOCRM&feature=youtu.be

Click on the link below to see the news story covering Riley’s FIRST “Dry Run”:

http://philadelphia.cbslocal.com/video/?autoStart=true&topVideoCatNo=default&clipId=5873148

Riley lives in an older, small, “three-room” home. They went from being a family of three with two incomes to a family of four with one income as Carol has stopped working to care for Riley. You never hear her complain about the financial impact of this situation…I guess, their whole perspective on life has changed as this family’s focus is on their children and Riley’s daily health struggles. They have had a few home repair issues which directly affected Riley’s care and that is when “Wish Upon A Hero” (Dave Girgenti, Founder) came into the picture. Ryan (Dave’s wingman), who facilitates the projects at “Wish Upon A Hero” jumped in and helped them during a hot water heater, then an air conditioning crisis.  Someone also granted a wish for Riley to be able to “put his toes in the sand” through “Wish Upon A Hero” and made it possible for the family to take him to the beach! The people at “Wish Upon A Hero” have been great friends to the O’Brien family and even more, the O’Brien s consider them to be a part of their family! 

Check out “Wish Upon A Hero” at: www.wishuponahero.com or on FaceBook: Wish Upon A Hero

Riley’s story has touched the lives of people of all walks of life and many have made efforts to support Riley’s journey by sharing his story. Riley’s parents are so grateful for every one of these people who send words of encouragement & prayers. Numerous celebrities have also embraced Riley in a show of support by following Riley’s Journey on facebook such as Faith Hill Martina McBride, & Amy Grant. Then others have re-tweeted “Riley’s Journey” such as Jo Frost “Super Nanny”, Howie Mandel, Rosie O’Donnel, Kendra Wilkinson, Chaz Bono, Ryan Secrest Foundation, Laurie Berkner (Nick Jr), Nancy Lee Grahn (General Hospital), Ingo Rabemacher (General Hospital), Laura Wright (General Hospital), Rodney Adkins, JR Martinez, Ricki Lake, Tiffany Haughton, Ron Ronnie R-Truth (WWE), Damon Gault (Borrowed Time), Carolyn Hennesey, and Kirstie Alley.

You can also learn more and & join Riley’s journey:

Facebook: Smile4Riley ~ Riley O’Brien Support Page

Website: http://www.smile4riley.com

Tell me again Father… about the day I’ll go to earth… Tell me about my mommy… (how she’s waiting for my birth) How she smiles when she thinks of me… and rubs her tummy proudly… How she prays for me each day and night… (And sings to me so loudly) How she cries because she knows I’m sick… but hopes for me no less… How she kneels beside her bed each night… just praying You know best. Tell me again Father… about the dad you have in mind… Will he teach me to be strong and sure… but also to be kind? Will he show me that all things in life… are surely worth a fight? Will he hug me when I’ve hurt myself… and teach me wrong from right? Tell me again Father… about my perfect plan… I cannot wait to get there… (I’ll help them understand) How very much you love them… in the good times and the bad… and when they see my face Father… I know they will be glad. For each and every moment is… a testament of love… and my smile may remind them that… life’s answers are above. Please tell them my Father… (when they come to you in tears) That you understand the pain they face… (then help to ease their fears) Tell them even when it’s dark… a light will lead the way… Then put your arms around them… (And listen while they pray) Please remind them Father… (As I long for them to know) that you’re holding me so gently… And you’ll never let me go… That even when their angry… at the trial they must face… I serve as a reminder… of your most amazing grace. Just one last thing I ask of You… (I’ll only ask one time) Tell my dad and mommy that… I’m glad you made them mine. ~Stephanie Husted

I always prided myself in being super organized & an excellent “multi-tasker” (a word that my husband & probably the majority of my former employees despise because I used it on a regular basis).  I felt like there was nothing that I couldn’t accomplish. I never said “no” & found a way to make everything fit in a day at all costs and I always thought that I would be a “jam up” stay-at-home mom because of this. Well, guess what? Now, I despise the term “multi-task” because since becoming ill, multitasking is not an option for me anymore. I have to focus on one thing at a time because my body only allows me to move at a certain speed and my mind is “foggy” most of the time due to the build-up of toxins in my brain because the liver normally filters these toxins & mine is shot – so I depend on medications to help rid my body of these dreadful toxins and some days are definitely better than others but never are they like they were before. This has become my “new normal” and I have struggled with that fact & have become somewhat of an introvert because I worry what one might think when I don’t complete a thought etc. when I am trying to have a conversation with someone who is not “aware” of my situation,

What is Joy & how do we find it when these life trials keep “happening”? I must say that sometimes finding joy is not an easy feat. Life can turn you upside down and inside out in so many different ways that sometimes just finding your footing can seem almost impossible! But in my opinion, Joy is a choice. Yep, I said it…it is a choice that we make for ourselves. We can choose to allow ourselves to be unhappy & be blinded by the “simple pleasures” that life gives us each and every day or we can force a smile & look for the joy in our day… when we are in pain, it is very difficult but we must make the most of our life.

I have a few “good hours” a day & some days I have none depending on how sick I am. But, it is amazing how I can find “joy” in the little things now.  An example would be … Just a few weeks ago, I was really sick with nausea & vomiting & had been in bed for several days… Just minutes after “losing my cookies” & crying out to God for relief as I hugged the cold “porcelain bowl”, I crawled back into bed and as I lay there, I clicked on my laptop that is almost always on and right next to me (you see, all of my friends are in this little box called a computer so I always try to keep it close). I had a message from Kelli (the heart transplant recipient highlighted in my most recent blog post) she had just met Merylene who was the recipient of the liver from the same donor who gave Kelli the gift of life & she thought it would be a good idea for me to share Merylene’s story too. Wow, both Kelli & Merylene had the same “angel donor”… how beautiful is this?!! Alicia (their donor angel) who said just months before her untimely passing that she wanted to make a difference in this world actually saved at least two lives and as I read Kelli’s message, I found myself smiling & I felt “joy”, I realized that Alicia has not only made a huge difference by giving the gift of life, she also brought me joy in this very moment!! I am so looking forward to publishing Merylene’s story.

Joy is an internal gift it is not necessarily happiness and sometimes we have to seek it because if we do not, joy can pass us without notice. Joy is a state of mind that we choose to encompass. It is making every moment count, It is accepting our “new normal” and finding Joy during our brokenness because if we continue to dwell on how things once were, we cannot “find joy” and whether we are ill or not, we ALL experience this “new normal” with life changes as we grow older, lose loved ones, suffer illnesses, job losses, etc. We ALL have pain & suffering but it is up to us to make sure that pain, suffering, & life changes do not define who we are… so we must find joy within and embrace it!!

Click on the links below to view Parts 1 & 2 of the interview:

Part-one January 15, 2012:  http://vimeo.com/35111164

Part-two January 22, 2012: http://vimeo.com/35488260 

Many thanks to Steve Casteel, Keith Tonkel, Anthony Thaxton & everyone at “The United Methodist Hour – Time that Makes the Difference” for this awesome ministry !!

Find your passion and pursue it with vigor. Revelations3:16 & Isiah 29:13

This is Kelli’s story in her words:

I was 36 years old… a very active wife, a mother of four, and waitress. I ran all day long and loved being busy. In June of 2008 I became short of breath and so very tired all the time. I was told I had pneumonia and Asthma. I kept heading back to the doctor and Emergency room weekly for two months. I was told my lungs were still full and needed to just dry out. I spent many weeks going from antibiotic to a stronger antibiotic. After not being able to lie down or eat my family forced me to go to the ER where I was told that it was my gallbladder but no one would be in till Monday to do the scans I needed so they were going to send me home. My family fought to keep me in the hospital until I was better. Over the next 36 hours, I gained 30lbs and was in the worst pain ever. I was sent to surgery at 11:00am on September 21 2008 they removed a perfectly good gallbladder and I sat up in recovery and said “I can’t breathe” then I fell in a coma for five days. When I awoke I was told that I had dilated cardiomyopathy and only 9% of my heart was functioning. They said that they never thought to look at my heart from my symptoms because of my age. Well, I asked “How do we fix it?” they told me we can’t – only a heart transplant could save my life. Fifteen days later when I became stable enough, I was transferred out of that hospital to a special transplant hospital, St Lukes in Kansas City Missouri. I was given two months to a year to live with this old heart. They admitted me for a week to evaluate me for transplant. I was healthy everywhere else but that old heart enlarged and not pumping. I had big bald spots on my head from no blood flow through my body. I received a defibrillator and a portable IV pump of medications to keep me living till I received a heart. The odds stacked against me with my O negative blood type and antibody rejection levels being high from having four children, 74 days later I was receiving plasmapheresis to clean the antibodies from my cells (a lot like chemo) I  was living in intensive care during that week when three of my nurses came in and said “How would you like to get your heart today?” It was really bittersweet. My Father was with me and we first prayed for the family that suffered a great loss then thanked him for his healing. I had a heart that matched perfect to mine!!!!

In three weeks I will be celebrating my third year with my new lease on life. I met my donor family on my two year anniversary on the news. This being year three we will be together honoring her flora graph picture for the donor float at the Rose Bowl Parade organ donor float on New Year’s day. Had it not been for Alicia (my donor) telling her father that if anything ever happened to her that her wishes were to donate all they could use. That was said three months before she passed and her family remembered and carried out her wishes. Many people live on from her gifts she left behind. She lives on in me.

My Dear Alicia,
“With every heart beat you refuse to let me die. With every breath I breathe I refuse to let you die. We are surviving together as one.” I love you with all my heart…Kelli

I was so touched by the story about Kelli’s donor angel, Alicia & how her family came to the decision to donate her organs & NEVER wavered because they knew that this was Alicia’s wish because she had made this known to them. The following is an excerpt from Donate Life Rose Bowl Parade Float Floragraph write-up: Alicia was a healthy 27-year-old who had just completed her first semester of law school in 2009. Alicia wanted to make a difference in the world and organ donation fulfilled one of her wishes. About three months before Alicia’s accident, she was watching a news story about organ transplants. Her parents recalled, “She asked us not to bury her organs if she was ever at the point of no return. We knew we were making the right decision because Alicia had told us what to do. We are privileged and grateful that we were able to fulfill Alicia’s final wish.”

See the full story at: http://www.donatelifefloat.org/prod/components/media_center/floragraphs/asabaugh.html

See the extremely moving footage of Kelli meeting Alicia’s family at:
http://www.kmbc.com/news/26860855/detail.html#.TuT8XskxLRw.email

This is a perfect reminder of how important it is to make your wishes to be an organ donor known to your family members. With this single conversation, Alicia saved Kelli’s life. And although her life was short-lived, she made a difference by donating life! I will be looking for the Donate Life float in the Rose Bowl parade this year… S

Kelli & her precious & very grateful family

Kelli & her husband

Kelli created this pic of she and her “donor angel” Alicia

Lately, I have not been so much fun to be around to say the least & I do realize this so I often avoid situations where I have to put on a “painted smile” to cover that I am not feeling well, my emotional  pain, fears, &frustration with my health as often as I can… so unfortunately, my family & close friends sometimes feel the brunt of  it & occasionally, they do get a dose of my “raw emotion”.  Even though I make a good effort to hide it from them, this “health situation” does get the best of me from time to time and as we say in the south, “I can be as ill as a hornet”. With all that said, I really do try to remain positive & keep smiling because we all know that people really grow weary of hearing how bad you feel blah…blah…blah… and thank God, I have the most amazing set of friends & my family is the bomb so they haven’t kicked me to the curb yet & for this, I am so very thankful! Although, at times, if I am completely honest, we can really get on each other’s nerves but we love each other just the same & I am thankful for them all!!

Now, for Thanksgiving this year….

One of the many things that I am thankful for is “clarity”! Through this current life trial, God has given me clarity that I have never known before. I have had some time to reflect on many experiences in my life – most were wonderful but a few were very painful experiences some of them brutally painful. With this new found clarity, I have realized that I am actually thankful for each & every experience, good and bad whether it be… loss of a loved one, betrayal of friends & sometimes family members, financial burdens, sticking my foot in my mouth (yep, I am really good at that one), making poor choices that I had to pay the consequences for, & yes, even my failing health… yep, you read it correctly, I am THANKFUL for all of these things. Let’s face it, we have ALL experienced pain & life trials & in all honesty, if it were our choice, we probably would not have “chosen” that path but unfortunately, pain is necessary for growth. If we allow our circumstances to “define” us this can sometimes cause a lifetime of unhappiness but only IF we allow it to. I refuse to do that because as crazy as it sounds, I am thankful for each & every mistake I’ve made, all of the painful experiences even the brutally painful experiences because each and every one of these things have contributed to my growth & prepared me for the next blow because believe me when I tell you, there is always another blow coming whether it be an “upper cut” or a “left hook”, it’s coming & my friends, it WILL hurt & sometimes it may even knock you to your knees & maybe flat on your back but you must get back up & move forward & most importantly, learn from whatever circumstance just “rung your bell” & be a better person for it!!

I can be quite “hard headed” & at times have struggled with letting go of past betrayals & pain & yes, I have held grudges but I realize that in doing this I am causing myself undue pain  so over the past several months I have made a conscious effort to “let it go” and to forgive & forget past betrayals/circumstances and have chosen to move forward because I now have this “clarity”, a precious gift that my savior has given me & my hope is that anyone who I have ever hurt will forgive me as well. I do believe that we must allow ourselves time to grieve when we go through life trials and pain because we are human.  But, we cannot waste our days dwelling on them forever. So to the circumstances or persons that the following may apply, whether you’ve made me laugh or made me cry, encouraged me or discouraged me, fueled me or drained me, filled my heart with joy or angered me, led me or left me, helped me or hurt me, provided a swift kick in the butt when I deserved it or a shoulder when I needed it… you have contributed to my growth so THANK YOU!!

I am so very thankful for so many things, honestly, too many to count… mostly for the new friendships that I have developed & lifelong friends who have been there for me and with me and who have lifted me when they did not even realize it… the “small things” & the “big things”, the words of encouragement are priceless. I am thankful for the prayers from friends, family, & complete strangers (although, I have a whole new outlook on the term “complete stranger” because in my eyes, we are ALL brothers & sisters in Christ). In my opinion, this friendship, support, and prayer has given me the thing that I am most thankful for this year & that is “TIME”. I cherish it now more than ever and I really do take notice of each and every moment that I waste by having an occasional “pity party” or gossiping about things that are none of my business, or “sweating the small stuff” like a messy house or my kid sticking his dirty little fingers in my potato chip bag (although, I am still working on that one because for those of you who know me well, know that I am a “certified germaphobe”). I am more conscious of anything I do that is a waste of precious time. Now please realize, that I said I “take notice” … yes, I still sometimes “waste” time although, I am more embarrassed than ever to admit that I would waste an ounce of precious time but I am however,  still a work in progress!

My only regret is that it took this life trial to accept this gift of clarity which I could have had a long time ago if I had simply taken the time to receive it but I was just too busy wasting precious time! You see, there I go again… I just have to keep reminding myself…”move forward Suzanne, do not look back with regret… because you know you will not be able to grow if you do not move forward & you can’t move forward if you keep looking back”.

Thank you God for these gifts, and for my friends & family who continue to lift me with their acts of love, prayers, & words of encouragement!!

Happy Thanksgiving!!

Suzanne

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.  ~Author Unknown

My favorite guys sitting in my “happy place” after our Thanksgiving meal…boy I am so thankful!!

I grew up a very healthy child. At age 10 I was diagnosed with autoimmune hepatitis. I was put on medication to stop my body from attacking my liver. I did very well on the meds until age 17. I woke up the second day of summer vacation feeling like I had the flu. I ended up having esophageal varices and was immediately taken to children’s hospital and rushed to surgery.  I was put on the transplant list and two weeks later I received my new liver. I had ups and downs but never had rejection. I had colon cancer and skin cancer about 7 years ago but the cases were mild. About 2 and half years ago I was at work not feeling well and went to the hospital. I later found out I had to have a new transplant because my spleen was enlarged and taking all my platelets and was causing my liver to fail. The doctors also found a blood clot in my liver. I am on medications again to keep me going.  I have been waiting for a year and a half so far for a new liver. I received a DVD from my donor family and I feel blessed to have the DVD and know a little about what she was like.

Thank you for sharing this story Greta & reminding us all how precious the gift of life is… S

5/8/12 – Update: Since we published Greta’s story, she has continued to hold on to hope for her “new life” as her health has continued to decline. Her kidneys have now failed and she is in need of both a kidney and liver transplant. Unfortunately, this is the case for those awaiting a life-saving organ  transplant, in order to receive the gift of life, you have to be the sickest one in the region where you are listed. Greta is now #1 in her region! She is so very ill but she remains positive… and she continues to hold on to hope!

5/17/12 – Update: Greta received “The Call” she just received her double organ transplant (Liver and Kidney) and is doing well.

8/23/12 – Sadly, Greta passed away this evening due to post transplant complications. She will be remembered for many things but I will remember her sweet, humble spirit and how grateful she was for each and every day. Thoughts and prayers for Greta’s family & friends over the days to come. Suzanne

“The Call”

Written by: Bill Hahn (Kidney/Pancreas recipient @ Shands Hospital New Years Eve of  2009 !

     Transplant…. When you hear the word out loud and it’s aimed, point blank, right at you, your life stands still … your heart skips a beat … and your mind races!  How will this change my life, what is my future, if any. The word fills your emotions from disbelief, to acceptance, to anticipation, to panic, to joy. A journey that takes years … a second at a time!

My journey started 30 years ago when I was diagnosed with juvenile diabetes. I was in shock! Was I really a diabetic? The lifestyle I had led was an active one. I was an avid runner, I wasn’t overweight. In brief, that lifestyle was not what caused my type 1 diabetes to occur. It was caused by a genetic pre-disposition. But my lifestyle would serve me well by conditioning me for all I was about to face. But the fact was, I was indeed a diabetic.. Try as I did, I still fell victim to some of the many complications the disease causes such as blindness, coma and seizures.

Years later I was diagnosed with end-stage renal failure. My kidneys had failed! I had to go on dialysis to stay alive. That started my wait for a transplant! The constant tick, tick, tick of the clock and the endless ring, ring, ring of the phone, wondering if today would be the day I’d get “The Call.”  

Then one day, just another ring of the phone, suddenly an unexpected voice, “this is Shands hospital, we have a match.” My mind started racing. I had only seconds to gather my thoughts and head to Gainesville, a 3-hour drive that seemed like an eternity, then a hush and a blur. That was New Years Eve of 2009‘.

I woke up in the New Year with a new kidney and pancreas. Was I all right? My family surrounded me with smiles; I was indeed, all right! The New Year rang in my new life. No more insulin shots. No more diabetes, No more dialysis. I had reached the equinox of my journey where the perils of chronic illnesses are replaced with the promise of a healthy, active future. Who was responsible for my gift of life?

My donor family without whom I would not be alive today, my medical support team and my personal support team all parts of the whole. While you can’t choose your donor family you can choose your hospital. I chose Shands Hospital in Gainesville, Florida. It is the right choice. They treat my organs as if they are their own. I say this even though I am a Florida State Seminole. In addition, they offer a Art in Medicine program that helps patients cope with the rigors of their journey. Something I had practiced all my life. Using my lyrical photography and song writing as healthy treatment to escape from the unrelenting beat of chronic illness.

Exercise and fitness is my other form of self-treatment and has been the other constant in my life. I consider myself a professional in the field having owned and operated Home Fitness Warehouse in Melbourne for the last 16 years. I currently run 20 miles a day, only 11 months after my transplant splitting time between my Precor elliptical cross trainer and my Precor advanced motion trainer.

What’s next?  The NKF of Florida, organizes local events each year with the biggest being the Labor Day Surf Festival. It will be celebrating its 26^th event in 2011. The year’s event will run from September 1^st through the 5th and promises to be the best yet with a 4-door Jeep Wrangler up for grabs.. The need for sponsors and volunteers gives all a chance to participate in giving the gift of life. Every donation is a donation of life. Over 100.000 people are still waiting for their second chance.

On New Years Eve of 2009 I was under the knife but this year I will be spending New Years Eve on the Cocoa Beach Pier  hoping to win this year’s Jeep raffle at the stroke of midnight.  But really I’ve already won, celebrating my second chance with the joy of living … Again! …with my family, friends and God…. tick, tick, tick! A second at a time… and it is oh, so sweet

DONATE LIFE!

Bill Hahn

The following is a poem written by Bill:

“Sighted by my Memories”
The perfect pitch of the cresting surf
A sea gull’s sonata fills my ease
Waves ripple and fiddle the shore
I’m finding my peace in harmony

I never listened ‘til I could not see
The ocean … and its whisper

The fragrance spun by a waterspout
Sheer essence swirled into potpourri
Scents ripple and fiddle the shore
I’m finding my hope in eternity

I never sighed ‘til I could not see
The ocean … and its splendor

Sunrise shimmers on my golden skin
I’m spiced with the salt of the sea
Daylight ripples and fiddles the shore
I’m finding my soul in serenity

I never hungered ‘till I could not see
The ocean … and its flavor

The tender touch of waters ebb
Soothes the longing inside of me
Emotions ripple and fiddle the shore
I’m finding my faith in tragedy

I never yearned ‘til I could not see
The ocean … and its treasure

I never saw ‘til I could not see
What the senses left me had in store
Sighted by my memories
I’m finding life … and so much more !

Written when God took my sight, photographed when He gave me my vision!
Bill Hahn (Amuse the blind poet) K/P Transplant Recipient
New Year’s Eve / New Year’s Day 2008/2009!
My New Birth

To see Bill’s video tribute, “This Feeling I Feel Inside is … You”…click on the link below:

http://www.goodnessreigns.com/films-share.php.

I originally started “Faces of Hope for Life” to increase awareness and to help educate the public of the need for organ donation by sharing my story and by posting the faces and the stories of the >111,000 people who are waiting for an organ transplant, and who are holding on to hope for life. Since starting this project, I have made so many friends across this country & in other countries through networking. But I must say that I never expected that by sharing these stories, it would have helped me in so many ways  in dealing with my own struggles…I could never have imagined this…I am blessed…. it is simply amazing how God works in our lives!! ….S

“I will restore you to health and I will heal you of your wounds,” declares the LORD.
~ Jeremiah 30:17 ~

This is Natasha’s story in her words…if you asked about my health a year ago, I would have told you I am a healthy 30 year old and an organ transplant would have never crossed my mind. I thought organ transplants were only for people with lifelong illnesses.  I am now eight months post liver transplant and have a new perspective on life after receiving the gift of life.

My life literally changed overnight. I woke up on Thanksgiving day not feeling well and based on my Google results, thought I was having a gallbladder attack. After a trip to the ER and a three night hospital stay, I was diagnosed with Hepatitis A, a viral infection most likely contracted from eating contaminated food. Most people fully recover from Hepatitis A after a week or two with flu like symptoms but I was the unlucky 1% of the population who went into full liver failure in less than one month after being diagnosed. I was readmitted to the hospital on December 29th.

My New Year’s Eve was spent in an ICU hospital room hoping the Doctors could work their magic and my liver would regenerate.  After New Year’s Day, I went downhill fast and was listed on the transplant list with a status 1, meaning I had less than seven days to live without a new liver. I was put into a medically induced coma to help preserve my chances of surviving surgery and to help with the swelling on my brain. On January 7, 2011 the Doctors told my family I needed a new liver badly, they thought I was going to die if I didn’t get one within the next 24 hours.  The next day on January 8^th my donor saved my life and I received my new liver.

I was given a second chance at life through the gift of organ donation.  I have a new hero in my life, my donor who I will forever be grateful for. I think about my donor every single day and will enjoy every good and bad day in honor of them.  This experience has taught me how precious life really is and to cherish what you have.

This story is just another example of how God performs miracles every day and his timing is ALWAYS perfect. Through the gift of organ donation by her “donor angel”, Natasha has been given this second chance for life. I invite you to visit Natasha’s blog at www.newlivernewlife.com Many thanks to Natasha for sharing her story…S

Picture 1. Celebrating New Years in ICU with a smile 8 days before transplant:

Picture 2. The day I woke up after 10 days in a coma and transplant. Still smiling…just happy to be alive:

Picture 3: A picture celebrating 6 months post transplant:

Picture 4. Celebrating life with a party:

Update: 12/31/11: I published Natasha’s transplant story several months ago. In honor of her one year anniversary of her “New Life”, Natasha recently created this video tribute for her blog A New Liver, A New Life…hope you like it!!

http://www.youtube.com/watch?feature=player_embedded&v=SHf0w25nyzo

Kappy’s transplant story….. First thing I have to say above and before anything else (I respect your beliefs and will not knock you for them, whether you believe in God or not) but I thank God the Father, the Son and the Holy Ghost/Spirit multiple times a day for giving me a second chance.  Because not a lot of individuals get a second chance for a transplant in their life and many wait quite a while till they get the transplant and many do not even get that second chance and die.  I am very fortunate because of the severity of my condition that I was officially put on the transplant list and less than 60 hours was being given that second chance. I have no idea when I first was afflicted with sarcoidosis but it could be from various different causes… working in gardens, from the fumes in a newspaper plant, from the fumes of a lawn mower, from the fumes of the city mosquito sprayer, from the hen houses on a farm, from the fumes of a printing plant, from the fumes of a sanitation strike in Taiwan, from the fumes of paint remover, from the talc and baby powder, from mold and mildew, from lead paint, from fertilizer, from powder bug spray, from gasoline, from transferred from birth, from the fumes of sulfuric acid removing paint, and there are many other including the environment.

I do know that the trigger was when I was in Taiwan, there was a sanitation strike in 1995 by the Chinese mafia and the stench triggered the sarcoidosis which prior to this, I had no symptoms of weight loss or lack of breath. I reluctantly returned to the states and was eventually diagnosed with sarcodosis by a pulmonologist here and he prescribed massive doses of prednisone to relieve the pressure in my lungs. I went into remission or dormancy for about 9 years then almost overnight I lost 24 pounds which is a side effect of sarcoidosis.

I went to the VA in long beach California and was supposed to have additional testing done but there were numerous “mix-ups” and they kept giving me the run around which ticked me off so I did nothing. Then in 2008 I started losing breath and it was much harder to breathe so I returned to the VA in long beach and had more tests run and a biopsy taken which confirmed the diagnosis of sarcoidosis…“suckatooshits?, snarkawhatitz?, sarkahodits?, sarkolddozees?, suckawhoeships?, sarcrudoozies?, zarkatwotitts?, sickafootlips?……SARCOIDOSIS….don’t worry no one says it right the first time…(attributed from TG “The Gardner”)

The physicians came to the conclusion that my lungs were trashed and I would need to be put on oxygen which led to eventual 24/7/365 of liquid oxygen.

The options for me were the following:
1) work with other ways to deal with the sarcoidosis
2) live with oxygen the rest of my life
3) get a lung transplant
4) death

Needless to say death in my mind was not even part of the equation so I decided and it took me a while to wrap my “pea picken lil brain” (per Tennessee Ernie Ford of the Grand Ol Oprey) around having the lung transplant and to fully embrace it but I finally did do it and I have no regrets because I wanted a better quality of life no matter how long or short it might be. I had all sorts of individuals giving me advice on whether I should do this or do that but in the end it was ultimately my decision & I feel that I made the right decision.

One thing I want to interject at this point is that I have the utmost respect for
the VA in Madison Wisconsin and the university of Wisconsin in Madison Wisconsin which is in my opinion, the number one lung transplant hospital in the united states and also the only VA hospital in the system in Madison which does lung and lung heart transplants for veterans, I also want to thank Dr. Goldberg with the VA in long beach for his tireless effort in getting me on the national transplant list although there were a few minor things which were not done right away,  he was on it like stink on a garbage truck and yelling and screaming at anyone who was slacking in their working up the paperwork and tests. I am his “claim to fame being his poster child” and the VA in long beach poster child for the lung transplant.

I want to thank my caretaker Crystal Villers. who I had never met before who after meeting six months earlier in a chat room on line and I mentioning that I would have to have a caretaker to be put on the list for the lung transplant I never asked her but after those six months she up and said out of the blue that she would do this for me she is a God send to me and I am forever thankful for her time and attention because she would “bite your tires” if she thought everything was not being done for me & my recovery.

During the pre-transplant evaluation week in Sept 2009 Crystal was pushing me in a wheel chair down the hall to the elevator and a man came walking towards us and asked if we were here for a transplant and we said we were here for the pre-evaluation. He walked directly towards us and he said that we would be on the “ride of our life” and he was right…we definitely were & and still going strong.

We met with Dr. Maloney on the Thursday of the pre evaluation week then that Friday met with Dr. Cornwell and he gave the so-called good, bad, and the ugly and they were…

1)     I would either be placed on the transplant list or

2)     I would be on placed the transplant list but before I am listed, some things still need to be addressed or

3)      No not ever,  and we wish u the best with whatever life u have left.

So crystal and I headed back to our homes & awaited the phone call. They mentioned that they would call within about 3 weeks but they called me a week and a half later …My journal entry: “Got a call this afternoon about 1:24 pm and I was on my laptop and received a message stating I had a voicemail message so I listened to it on my computer and the person gave their name and said they were from the VA in Madison Wisconsin and wanted to speak with me, they also mentioned that they would be there another 30-45 minutes or I could call them in the morning being they are 2 hours ahead of me so when I heard the VA Madison, I thought to myself geez Louise this is it the call one way or the other I will be calm and not let my emotions get a hold of me and I made every effort to stay calm…I knew I was going to hear one of three answers.”  I do have to say I did shed a few tears when I heard the message and also when I listened to this person give me the information so there is no telling what I will do when I get the most important phone telling me to get my hinny in there and get prepped for surgery!

So I called the VA and asked to speak with the individual who is head of the transplant department at the VA she mentioned they wanted me to come back to Madison and have another angiogram on the right side of my heart most likely to check it out and make sure one final time that there would be no complications, and after that is done for me to stay in Madison…so I took it that once the angiogram is done and they put the data into the national transplant data bank I will be officially on the transplant list and wait until they find some super duper, fantabulous, awesome lungs for me … In the states they use something called the LAS which is lung allocation score and from the results they place one on the list but one does not know where they stand on the list and the list is always fluctuating., Now they only gave me 1-2 weeks to live and that is why I was put so high on the transplant list.

An interesting thing is that my caretaker was down in the “smoke shack” at the VA earlier in the week and she was talking with a gentleman who she had never seen before and he asked her if she was here with someone awaiting a lung transplant and she said yes he told her that I would be getting a transplant within the week and when she looked up to say something to him he was gone and the only thing we both can think of is that he was a guardian angel.

I was officially put on the lung transplant list on a Friday at 430 pm and got a call at 330pm on the following Sunday stating they had lung for me and I said let’s get er’ done. Then I was rolled into the operating room and before I went through the doors I said “the bolt” which only those in my fraternity know about. Then as I was getting all hooked up, I asked if anyone wanted to do the “ku rock chalk chant”  the anesthesiologist was from Nebraska and he looked at me and said it is ”beddy bye” for u but he did allow me finish the “ku rock chalk chant”. What they did not know until after they had started my surgery is that my pulmonary arterial pressure was jumping off of the charts…otherwise I would have been taken off of the transplant list but they had me there on the slab so to speak and they had the donor lung and lungs are only good for 6 hours after they are harvested and need to be transplanted into the recipient or they are no good so luckily, I was transplanted. So I awoke who knows when because they had me in induced coma for 3 days because my heart was enlarged and they wanted me to rest it and not to put too much pressure on it.

So two weeks after the transplant I was taken off of tank oxygen and have been off of it ever since. I go back to Madison Wisconsin every 3 months for follow-up with the transplant team. I take about 20 drugs every day which are for anti rejection and anti fungal for the donor lung and some vitamins and I will do this for the rest of my life but I knew this going into it and if I was not willing to comply with this medication regimen, then I would not have gone through with the lung transplant. November 9, 2009 will be one year since the lung transplant and things have been going fantastic for me also I am one of the few who have had no problems. I only received a right lung transplant and the reason I did not get a double lung transplant is one of two reasons and the first is the left lung was not good and the second is because someone else needed a lung transplant. I still have an obstructed left lung but the right one is about 98-96 percent when I exert energy. So here I am in fantastic shape as well as taking each day one at a time.

A few closing words from my new friend, Kappy….S 

I have sarcoidosis it does not have me
I will kick its ass
I refuse to lose
                     Thomas Michael Kappler

Please get in touch with the national organ transplant office and register to be an organ donor because when you die they are of no use to you and you will save lives. And be sure  your family knows that you wish to be an organ donor. Now, I am off of my soap box….

Thank you Kappy, for this story! Best of luck to you & your second chance at life & keep up that fighting spirit…S

For he will command his angels concerning you to guard you in all your ways. Psalm 91:11

Here is Chip’s story in his words… S

Chip’s kidney journey… Well let’s see…. Yes, I Need another Kidney Transplant!! polycystic kidney disease runs in the family I got from my mother (RIP)…watched her suffer for10 years when I was young when she was going through dialysis and 2 failed Transplants before she passed at age 52…way too young! My mom was and is my hero because she was so strong through it all, she was a tough lady and the sweetest woman you would ever want to meet….I have 3 brothers but only 2 from Mom, (Rick and Bob)…Bob got his transplant 8 years ago and is still going strong:)…Rick is the oldest and is now finding out that his kidneys are beginning to fail & he will eventually need a transplant. Now, on to me, although, I knew that polycystic kidney disease is genetic, I found out for sure when I was 17 years old that I did have this dreaded disease – it was before my basketball game when I passed blood and it really scared me, so we went to the hospital and found out that yes, I have PKD too but, the doctor told me that I shouldn’t have to worry about it for a long time, well that “long time” turned into 20 years….Back in August 05’ I started to feel lightheaded and got worried, I thought it might have something to do with my heart so I got that checked out and it was just fine, so I went back to work and it kept happening so I went back to the doc again and that’s when he told me that my kidneys were only working about 20% and I think at the time my creatinine was up to  5 so I went through all the tests to get on the waiting list and a year after being on the list I got really sick passing out couldn’t get out of bed – I was really sick so that’s when they put me on dialysis June 23 2006…So there I was one year on the list and on dialysis and I waited 2 1/2 more years on dialysis – a total of 3 1/2 years on the list and after call… after call… after call… I finally got my kidney February 27, 2009…Wow I woke up the next morning and I felt like I was reborn – the donor kidney started working right away and I was out of the hospital after 3 days and was thinking now I can get back to where I was before all this happened.. at the time, I weighed 235lbs and I wanted to get down to 185 so when they said I could start working out that’s what I did…started slow of course and got stronger with each month. I did everything they said for me to do, took my meds, ate a healthy diet, cut out salt and fat, &  drank lots and lots of water and within 4 months, I was back playing softball and after 6 months I lost the 40 pounds I wanted to lose and felt like I was 18 again. Through the 6 months post-op, all of my blood work was perfect, but I kept getting the BK and CMV virus and they had to keep adjusting my meds to combat the viruses but still everything was fine, but when I went for my 6 month biopsy, they found a slight rejection. The doctors were surprised being that my blood work was fine through all of this, So they gave me 2 IV’s of Prednisone and said that it should take care of the rejection but, a month and a half later I was back in the hospital and my creatinine was up to 4 – they tried everything to get it back down but they told me that my kidney was failing and that I would have to go back on dialysis soon …so I returned to the dialysis center on Feb26 2010 – one year to the date of my Transplant, but this time was different, I didn’t feel right, I always had a fever after dialysis everyday – this went on for a while and then one of my valves started leaking blood and it got into my lungs from my blood pressure being so high so I had fluid and blood in my lungs and a fever and was really anemic so bad that my hemoglobin went down to 7. I could barely walk so after a couple of blood transfusions that didn’t help… back into the hospital I went – they ran all kinds of tests to see if I had any infections and they didn’t find any. My dialysis doc told me that he thought it was my donor kidney giving me the problems and I told them that but they got the fluid and blood out of my lungs and sent me home with some antibiotics for the fever and 2 weeks later same thing only this time my oxygen levels were at 50% so they knocked me out shoved a tube down my throat and life flighted me back to the hospital….and I went through it all again – the same as the first time until some of the other doctors finally convinced the Transplant doc to take out my donor kidney and guess what?? Yup, the donor kidney was making me sick. It had something called stenosis…anyway half of the donor kidney was basically dead. So after that, WOW no more fevers oh, by the way they also pulled 22 pounds of fluid off of me in 4 days (wonder why I had fluid in my lungs). So now I am waiting on dialysis until I get my new kidney. I am O Pos but anyone can be tested regardless of your blood type thanks to the Kidney Exchange… If you or anyone you know is interested in more information about donation and helping me find my new kidney please contact me so I can give you the information to see if you can help me or if you are not a donor and are interested about the process you can go to http://donatelife.net/

Chip is currently searching for a donor for a second kidney transplant & continues to hold on to hope for life. You can probably tell by Chip’s positive attitude and his fighting spirit that he wants to LIVE his life. During the 6 months post-transplant, he did everything possible & fought as hard as he could to be healthy but unfortunately his donor organ won the battle but, not the war because you see, Chip is NOT going down without a fight, he is making every effort possible to find a donor to save his life and remains positive throughout his search…S

Chip has an open group on Facebook: Finding Chip and friends their Hero Donor

My name is Steve. I was interviewed for a friend’s blog in Dec. 2010, 5 months after my double transplant. The blog tells my story and goes into how I got through what I had to get through leading up to my transplants. It’s been a little over a year since my transplants and I’m doing great and have my life back once more. If it weren’t for my God and my donor I know I’d be dead today. I appreciate all that’s been done for me and given to me. I owe a lot to several people for my being here, but my donor’s unselfishness is why I’m still alive. In all I do with my second chance at life my goal is to honor God and my donor. I truly hope that someone can find some kind of inspiration or hope to keep on fighting until their transplant comes. Thanks, Steve….

“Steve? Is that Steve?  I was astonished as I looked at Steve’s photos on the internet.  Steve’s picture showed him riding his motorcycle.  Another picture showed him in a suit, wearing a charming smile.  I was looking now at a strong and happy man.  A man full of life. That was not the Steve I had met a few years ago.  He was one of my residents in the nursing home.  After I met him I became more careful at saying: ‘I love working with the elderly in the nursing home’ because he was not an elderly man.  Nursing homes, unlike many people believe, are not necessarily for older people, or a place to die.  I’ve met quite a few younger residents whose unfortunate path of life and health battles forced them to be in a facility where they can get the care and assistance they need. Steve was one of them.  In his thirties, Steve was a frail man, afflicted by kidney failure and diabetes. “I like your drawing!” I told Steve the first time I entered his neatly kept room.  The walls were decorated with pictures he had drawn. There were also books, posters, a collection of music CDs, and videos.  I learned later that Steve wrote poetry.  Art, reading, music… food for the soul, I was amazed. That was a unique room. Steve was a distinctive resident.  Over a year I had the opportunity to follow Steve. He was a very delightful and polite man. These qualities were not enough for some other people to have sympathy or to feel some compassion. “He is getting more attention than anyone else!”  a resident exclaimed once.” It took time to make others understand that even if Steve was younger than most of the residents, the complexity of his medical condition made him frail and feeble.  Steve had several instances, caused by different health issues, which led to his being rushed to the hospital on many occasions.

I learned later that the nursing home was not the only battlefield in Steve’s life.  The nursing home was perhaps the easiest one.  Steve’s childhood was marked with sad events, starting when he lost his mother at age twelve.  Tired of living in a home where abuse, alcohol and drugs were part of the daily routine of his father and stepmother, Steve moved out at age sixteen. Life for him was not better on the streets.  For the next three years, Steve was involved in drugs, alcohol and theft.  His hot temper led him into physical fights, with his life in peril a few times.  The loneliness of being homeless, and later the bitterness of jail time made Steve touch the bottom of misery.  One person, only one person, came to jail to visit Steve during his nine-month sentence: his church Pastor.   Steve attended the Baptist church on and off.  Eventually, his only light became his faith.  With the mentoring of his pastor, Steve’s spirituality started to give him strength.  And more importantly, hope.  Steve had earned his diploma, and with help of his Pastor, enrolled at Baptist Bible College. This is how Steve describes this chapter of his life: “I was kind of worried about starting school so late in life, being 24 at that time, but I was also scared because I knew that I had trouble in high school trying to pass any of my classes. These fears and worries didn’t last long.  I actually loved school and was interested in everything I was learning.  I was able to find a part of me that I never realized ever existed.  I was on the National Dean’s List almost every year that I was there.  It was after two years of school that I realized what God wanted me to do. I was to get a Masters in Counseling so that I could help people who were dealing with things in their lives that I had gone through in mine.”

After graduating, Steve lived with his brother and continued his involvement with church activities.  At church, he met a woman who later became his wife.  After two years of marriage, Steve started to experience serious health problems.  Steve was diabetic since age nine.  This condition was never a concern for him or anyone in his family.  Now Steve was suffering the consequences.  As Steve’s health deteriorated, his wife started to have an affair with another man.  Steve’s attempts to convince his wife to go through counseling and save their marriage were unsuccessful.  One day his wife came to him, and told him she was pregnant with her lover’s baby and she wanted a divorce. As Steve’s marriage failed, so did his kidneys.  Steve’s life went into another phase:  the nursing home resident.  He had no other option but be in a facility where he could have twenty-four hour care.  Although Steve resided in nursing homes for five years, he never gave up on his hope of getting his health back, and going back to the community.  Now Steve needed a kidney transplant. “During all the many surgeries and sicknesses I went through during the eight years of dialysis and living in nursing homes, I had never lost my faith in God.  If anything, I would have to say my faith grew stronger for the simple reason that God had pulled me through things that I was watching other patients die from on a regular basis, things that my doctors themselves never thought that I’d survive.  I had however, given all of my health problems over to God and told Him that I accept the fact that He is in control and that I was ready to leave this world at any time if He was ready to take me.  It was only then that I stopped fearing death, as I knew what followed, and accepted that eventually it comes to everyone.” In the meantime, Steve had kept a close relationship with his brother. Now a Pastor, his brother was also his spiritual mentor and main support.  In later years, Steve’s father became terminally ill.  Steve started to visit his father and for the first time share the love of father and son that never was expressed in the past. Their bond was brief, as Steve’s father passed away soon after their reencounter.  I left the facility where Steve resided, and learned that he also left soon after that.  His health stabilized enough that he was able to move into an apartment, and live as independent as possible. Yet he had to continue his dialysis, with a great deal of uncertainty as he received shocking news:“I was told after several surgeries and attempts to fix my vascular problem, that I had no more good veins in my body that would be strong enough to use and withstand my dialysis treatments.  My vascular surgeon told me that I had nothing left that would be strong enough to work with.  I was at the end of my rope.”

Against all odds his faith and willpower endured. “It was after my final graft failed and my options had run out that I contacted my transplant center and asked them what my chances of getting a kidney were.  I had been told two years prior to this that I would most likely never get a transplant due to having a high antibody level in my blood.  I had already been on the transplant list for six years and had several calls to receive transplants but so far every time I went to the hospital I was sent back home because of my antibody level being too high.  At this point, I needed a miracle.”

And Steve’s prayers were answered on July 16, 2010. Four days prior to that day Steve received a call from the transplant center telling him to make the trip to St. Louis yet one more time for what would turn out to be the last call for a transplant.. When he arrived, he was immediately admitted.  Lab work was done quickly. “The results had come back and they were all good, the operation was going to happen. The excitement, as well as shock, set in at this time.  I asked if they could wait a few minutes for my family to get there, and I was told no, it had to happen now.  I started praying and thanking God.” Curious about why this transplant surgery was going to work, and where the organs were coming from, Steve asked the doctor about the donor.  The surgeon simply explained that the donor was a twenty-year old healthy man who had a seizure that put him in a comma.  After determining that the young man’s brain was dead, the family decided to take him off of life support, and asked that his organs be harvested and donated. “The surgeon told me that they held those organs for me specifically because the match was perfect, and that the donor had antigens in his blood which would counteract the high antibody levels in my blood. There was no doubt in anyone’s mind that this was a miracle.” Steve’s humble heartfelt for his young donor.  His reflections never stopped: “I felt bad for the young man who was only beginning his life and ended up losing it and donating his organs to someone who had already lived and brought his health issues on himself.  Because of this man’s death I was given a second chance at life.” Steve’s family arrived right at the time he was being wheeled to the operating room.  Steve got to share a few minutes with them.  He was now ready. Steve underwent a kidney and pancreas transplant that lasted a little over five hours. The operation was successful and he recovered quickly.  It has been five months since the surgery.  Steve is now diabetes-free and dialysis-free.

Steve had recently visited the dialysis center to see the staff that took care of him for years. He had gone to thank them for all they had done to get him where he was.  One of the nurses became tearful and told Steve that “no one has ever come back after having a transplant to show their appreciation for what we have done for them.”  And to his surprise, Steve was offered a job at the dialysis center.  A job that he describes as: “doing the same treatments that were done on me that helped keep me alive long enough to receive my transplant.  They believe I can relate to the patients, trying to encourage them at a point in life when there seems to be no hope.  I look forward to doing this.” I was speechless when I saw Steve’s photos, as it had been two years since the last time I saw him at the nursing home.  I was tremendously touched at learning about his new life, about the miracle of “a second chance at life” as he describes it.  Steve, once my resident, now my friend, is one of the most inspiring persons in my life. Happy, blessed and glorious New Year, Steve! By: D. P. – “A Social Workers Blog”

Many thanks to Steve for submitting this inspiring story of hope & endurance. This story reminds me of a quote that I recently ran across & I would like to share it…S

Be at Peace

By: St. Francis De Sales

Do not look forward in fear to the changes in life;
rather, look to them with full hope that as they arise,
God, whose very own you are, will lead you safely through all things;
and when you cannot stand it, God will carry you in His arms.

Best of Both Worlds… People have always said to appreciate what’s there today, because one day it might not be there. I never really listened when people said this because I had never lost anyone or anything close to me. I thought my family as well as myself was invincible. Turns out, we aren’t even close. I always had what I needed at the right time. When my mom became ill, I learned very quickly that getting what I want isn’t the most essential thing. Gifts at Christmas were suddenly not what I wanted anymore. The only thing I was apprehensive about was my mom’s life. Someone would need to die in order for her to live. I rapidly learned that there are valleys we must go through in life in order to stand on the mountain top. Even though I had to learn the hard way, I am thankful for the journey I have taken. Through all if this, I have come to realize that my mom is my best friend.

In August 2009, my mom began to show signs of hereditary cirrhosis of the liver. Unknown to me at the time, she had this disease, and it was going to spread more rapidly than anyone thought it would. I watched for weeks as she became weaker and weaker. She never complained about feeling sick because she didn’t want to worry my sister and me. Even though I had not been told she was sick, I knew something was not right. She began to swell very badly. She would make a weekly visit to the doctor getting fluid drawn out of her abdomen.  Her eyes and skin began to turn yellow. I knew this was out of the ordinary, but I never realized how severe it really was. I would question myself as to what possible thing could be wrong with my mom, whom I always pictured as a perfect invincible woman.  I would ponder the possibilities but never came to a conclusion.  I was afraid to ask because I didn’t want to upset anyone. Therefore, I kept all of my questions and concerns to myself for a long time. As September came and went, she was put on long-term disability and stopped working because she could no longer get up out of a chair on her own. I would leave for school in the mornings feeling terrible for leaving her alone. It felt as if I were abandoning her when she needed me the most.  All I wanted to do was sit with her, talk to her, keep her company, and help her. At night after everyone would be asleep for the night, I would sit in my room alone and cry for hours. I remember one specific time when I began to realize things were not the same. I was stringing Christmas lights around my room for the holidays. My dad asked if I wanted to go get something to eat, so I agreed. I wasn’t in the mood to eat, so I went along for the ride. When we arrived back home, my mom asked me where my food was. I told her I wasn’t hungry and returned to my decorating. She got so upset because her sickness was causing me to grow deeper and deeper into depression. All I wanted to do was finish my lights and go to sleep. Instead, my mom made me drive back to the restaurant, and get myself something to eat. After returning home, I laid in my room under my twinkling Christmas lights. I wondered if things would ever be the same. In the back of my mind, I knew things were not going to end well without some sort of miracle. The valley seemed to be endless. It was as if it was a black hole that I was falling into faster and faster.  I would pray and pray to God that He would somehow heal her. Everyone I knew was praying for her healing, but she continued to get sicker. Nothing was working and time was running out. The days were passing by her slowly. There was nothing that could be done to relieve her of the pain. Everyone had to keep living his or her own lives around her, as she lay there, dying.        I was rapidly descending into a dark valley that I wasn’t sure I would come out of.

November passed by like a slow moving train, and she only got sicker with every passing day. I could see her lively spirits diminishing. I had so much thrown at me as a fifteen year old girl. I not only had to deal with my mom dying in front of my eyes, but also I had to step up and be a mother figure to Natalie, my younger sister. It killed me to watch her cry and ask me if our mom was going to die. I didn’t know and I had no answer for her. Natalie and my mom always did Natalie’s homework at night together. One night, Natalie was having trouble with some homework so she went to my mom. My mom was on so much pain medicine that she couldn’t even communicate. I had to help Natalie with her homework even though she wanted my mom. This was hard on me because it made me realize how much my mom does. By December, I could no longer even carry on a normal conversation with my mom. She was in so much pain that she took pain medicine and slept all day. I was devastated seeing her in so much pain, and me being so helpless. It was as if the valley I was in was never ending. It kept getting deeper and deeper, pulling me down with it. This is really the beginning of me realizing how much my mom meant to me. I began to rethink my relationship with her. I began to feel something more than just a mother-daughter bond, but I wasn’t sure what it was yet.

The day my mom went into the hospital is plastered in my mind forever. My sister and I left for school like we did every morning. My mom was going for yet another doctor’s appointment. It was a half-day for the end of food drive. My dad was supposed to pick us up. I knew something was wrong when my grandfather picked us up instead of my dad. My grandfather broke the news to us that my mom had been admitted into the hospital. She went into a coma because of the ammonia in her bloodstream not long after being admitted. The moment I heard this, I couldn’t even breathe. It felt as if someone had punched me in the stomach as hard as they could, over and over again. My world was spiraling out of control. Right before my eyes, I was losing the most important person in my life. Later on the next week, my sister and I were going to visit her. I had spoken to my dad before the visit; he said she wouldn’t know who I was. At that moment, it hit me like a ton of bricks: My mom was dying, and I would never be able to tell her loved her again. My sister and I both decided we didn’t want to go that night. At this point, I hit the bottom of the valley.  A few days later, she was transported to Methodist University Hospital in Memphis, Tennessee.  She developed pneumonia and was put into the Intensive Care Unit and put on round the clock watch. Everything that was done by the doctors was very critical. The doctors knew she was not doing well. The doctors and nurses in Memphis amazed me. I have never seen doctors and nurses who love and care for patients and their family as much they did. I was very comforted by the fact that they were trying everything they possibly could to save her life. The day I heard her head doctor, Dr. James Eason, say she only had forty-eight hours to live if she didn’t improve was the most devastating thing I have ever heard. I had come to a point where I couldn’t even cry anymore. The smell of the Intensive Care Unit is burned in my mind like a fire. In my mind, it smelled like a funeral home. It was so distinct and scary. The ominous feeling on that one floor can be felt as soon as the elevator doors open. Everything that happened from this point on made me wish I had one more day with my mom.

Christmas Day came, and I was not in the Christmas spirit at all. I didn’t care if I received one gift for the rest of my life. All I wanted was for my mom to improve enough to get a transplant. I prayed constantly for some sort of miracle to happen. As the day went on, I began to become disappointed because she was not improving, but thankfully she hadn’t got any worse. The night began to draw to an end. The last visit of the evening was quickly approaching. My aunt, uncle, and dad were going to visit with her. As my dad approached my mom’s bedside, his phone began to ring. It was Doctor Eason on the other end of the line. To our surprise, my mom had improved enough that afternoon to be put on the transplant list; and she was put on the very top! She was going to have a liver transplant the following morning. At this moment, I wanted to scream at the top of my lungs. I have never been so happy to hear anything in my life. It is almost impossible to describe the feelings I felt at this moment. It was as if an angel had been sent from heaven to take care of my mom. A family we had never met decided to give my mom a gift for Christmas. God had finally answered all of the prayers that had been going up to Him for months. I finally could begin to climb out of this gloomy valley.

After my mom’s transplant, I was afraid to see her. I hadn’t seen her in almost a month; I didn’t know how she was going to look. As I walked around the corner into the ICU, I could feel my stomach churning and my throat getting tighter and tighter. I couldn’t even imagine what her reaction was going to be. As I rounded the corner into her room, I saw her for the first time.  She looked over toward the door and saw me. We both began to cry and hugged for the first time in almost a month. Feeling how small and frail she was shocked me. I didn’t want to touch her because I was afraid I would hurt her. She was so small, and yet so strong as well. She amazed me over the next few weeks. She became stronger and stronger every day. The day she was able to walk down the hallway by herself was thrilling for me. Finally, we were able to go home to Nashville. I knew when we got home; we still had hurdles to jump through. She had to overcome a lot more before our life could be “normal” again. But I knew if anyone could do it, she could. I watched as she began to get up and do things for herself again.  This inspired me so much. Being able to sit and talk with her again felt so good. Something inside me had changed; I had a new appreciation for my mom. I could finally see the light at the top of the mountain as I climbed for the summit.

This experience has made me realize that my mom is my best friend. Before her illness, I took her for granted all the time. I never appreciated everything she did for me on a daily basis. When she wasn’t able to do her daily tasks anymore, it really set in that she is superwoman.  Simple things such as cleaning, going to the grocery store, or cooking dinner were impossible for her pre-transplant. I love sitting down with my family after my mom cooks a wonderful dinner for us. The first night she was able to cook dinner for us was amazing. I have never had food that tasted as good as it did then, only because she was finally able to cook again. Also, being able to give her a gift on Mother’s Day was a marvelous feeling. I didn’t think I would be able to experience another one with her. The fact that I did still amazes me every day.  I love our late night talks about everything going on in our life. She tells me about all of the things happening at her work, and I tell her about my boy problems. It has become routine for us in the past few months, and I absolutely love it. She is not only my mom; she is my best friend. I have the best of both worlds. I was finally at the peak of the mountain. It felt so good to know everything was going to be okay. I knew I was going to have my best friend around for a long time.

My mom is the most amazing person in my life. A year ago, I did not comprehend this. I now tell people to appreciate the people they have in their lives because one day they will be gone. This is very real to me now.  I realize how precious the gift of life really is. God gives us valleys to go through in our lives. I have been able to come through this dark, gloomy valley with a new understanding of my mom. Through everything I have endured, I have realized that my mom is my best friend.

I want to thank Ashley for sharing this story. It is a good lesson for me & I hope it touches the readers as much as it did me. This story reminds me of a quote by Mother Teresa…S

“Pain and suffering have come into your life, but remember pain, sorrow, suffering are but the kiss of Jesus – a sign that you have come so close to Him that He can kiss you.”
— Mother Teresa

Cindy with her precious family before transplant (Christmas Tree) & three months post-transplant.

I write this story on behalf of my dear sweet husband who on June 28, 2011 at 10:30pm was delivered from God the perfect liver!! This is a true love story that began in May of 2007 after being married 10 years. Phillip was told on May 2007 he had full-blown non-alcoholic cirrhosis of the liver and would need a liver transplant.  The news was shocking and life changing.  At the time we were told about this disease our marriage was not in good shape.  But for the grace and the mercy of God we feel in love again. It was not easy rebuilding our marriage but we did.  So when the time came for me to save his life I loved this man with all my heart. Falling in love with Phillip meant putting God first in our life and knowing every day we had together was a blessing. He was listed in Phoenix, Arizona at Banner Good Samaritan in March of 2008 he was not “sick” yet.  I remember thinking, “this is so lame, my husband is a big strong man I can’t even believe he will ever need a liver,” but this is what the doctors were telling us to do, so we did.  Even the surgeon we saw that day said I will see you in ten years – he was so “healthy.” For the first year things were OK, we went to our routine doctor appointments and paid the co-pay and I would tell my husband this is so “stupid.” Little did I know what God had planned for our life… In March of 2009 he had his first problem, he developed bleeding of the varicose veins at the lower end of the esophagus and in the stomach lining. In layman’s terms, he almost bled to death.  We rushed him the hospital and they put a bunch of rubber band like things on the bleeding veins of his esophagus in order to stop the bleeding. We had to continue to go to the hospital every three months to keep an eye on the veins but again, another year went by and he was stable.  The doctors were amazed how well he recovered from his first bleed. Normally people don’t recover quite like he did. During that time God worked on our marriage and we worked through many issues and things came to light. I finally understood my part as the caretaker. He is the father of my son and more, he is my best friend. My job was to keep him alive, not only for my sake but also for our son’s sake.  So I continued to pray for God’s will on Earth, as it is Heaven.  We wanted daddy to live and we prayed that this was God’s will. The running joke was, our son was not going to go to therapy at 30 because his mom did not do everything in her power to keep his daddy alive. So our sweet and loving son stood by his mommy’s side as she did everything in her power to keep daddy alive and also maintain a normal life for her son.

And so the journey for the perfect liver began, as we stormed the gates of heaven in prayer. In the summer of 2010 our doctor in AZ told us that we should get listed in another state. The MELD score has to be so high in AZ that he thought it would be in our best interest to have Phillip dually listed (listed in two different regions). The doctor felt the people in AZ had to become way too sick prior to being listed and we should go somewhere were there the wait time to  be “actively listed” for a liver may be shorter.  Little did he know how sick Phillip would become and how important it was to be “dually listed”.  In hindsight, had we not been listed in WA my sweet husband would have died. After hours and hours of research, talking to the insurance company, and praying we picked Washington State. It took us three months to get our foot in the door, but in Aug. of 2010 we flew as a family to Washington state and meet with the liver team at the University of Washington. Again we went through the gauntlet of testing for three days. It was a little easier because Phillip was on a list already so they could take some of the test from AZ. Yet, every transplant center wants their own tests run before listing. At this time Phillip was sick but able to still get around. He was really tired and you could tell the disease was starting to take a toll on him. On Dec. 14^th 2010 my husband was unable to go to work any longer. The disease was finally catching up with him. He was swollen from head to toe, and could no longer get his shoes on his feet for work.  He was miserable. I know this will sound funny but Dec. 14 is my birthday and he had forgotten to say happy birthday that morning when I left for work. Now I may sound like a whining wife but in 14 years he had never forgotten my birthday. I knew things were going downhill.  By this time he was becoming encephalopathic, I had no idea what encephalopathic was or even how to say the word. For Christmas and new year’s we spent our days in the hospital he had  more GI bleeds and complications yet his meld score was not high enough for transplant. By this time I was on a first name basis with both nurses at the transplant centers where he was listed along with having them on my speed dial. Phillip was no longer able to take care of himself. One of the most shocking things was the MELD score in WA was starting to match the MELD score in AZ. We could not believe it.! We originally chose WA because the MELD score requirement was lower there. But the list was getting longer in WA and donors were down so the patients in need of a liver had to become sicker in order to be transplanted.  Both doctors seemed to agree that transplant would happen in AZ before WA. I had many conversations with God telling Him, “I did not understand why we wasted the money and the time going to WA?” It just did not make any since to me. Maybe Phillip and I had jumped the gun and taken things into our own hands. Maybe it was not Gods will to be listed in WA as we originally believed .

Oh but we serve an awesome God and He had a plan and WA was where we were supposed to be. He told me to trust Him – I would see the plan, I was to remain strong and take care of Phillip. In Feb. 2011 we were told to come back to WA for our six-month follow up. This was when it all began. They found a clot in Phillips portal vein that was not there in Dec. when AZ did a CT scan on Phillip. I was told, “not to worry, there was still blood getting into the liver but they would need to keep an eye on the clot.” This was not good news at all. In AZ if you have a clot in the portal vein you are taken off the transplant list. We knew this and we were scared. After talking to the nurse in AZ she also said, “not to worry!” Blood was still flowing we would repeat another CT in three months. Phillip was back in the hospital again in March of 2011 again, with complications. At that point his doctor came to us and told us that he wanted to do the TIPS procedure on Phillip. A TIPS is done most times as a bridge to transplant. It is a stint they put in so the clot won’t get any bigger.   My husband’s “actual” MELD score was not reflecting how incredibly sick he actually was which unfortunately, is a BIG problem with the MELD scoring system because out of all of the lab values involved in liver failure, the MELD score only takes into account three. There are many things that could go wrong when doing a TIPS procedure on a man with a MELD score of 23, unfortunately, this procedure can also take your life – sometimes a donor is needed ASAP after this procedure so it is indeed, a risk. Yet, after having a private conversation with our physician, this was a risk we were willing to take. We were totally worn out and depressed and ready to do whatever it took to get a new liver.  That day we called WA and asked our doctor there what he thought.  He had another opinion and thought it was not wise.  Although he understood why we would do it, he said, “we would not do it to a man as sick as your husband here in WA.” We prayed about this and again, God had other plans – we set the date!! We went to the hospital on April 26^th to have the procedure done and they took one look at my husband and sent us home. He was so encephalopathic that he could not tell you the date or why he was in the hospital. One of the side effects of the TIPS is it makes a person more encephalpathic and they could go into an irreversible coma. So home we went with our doubled up prescription of Lactulose and were told to come back next week.  I really thought this procedure would have been the answer to our prayers I could not believe we were back home. I was so depressed I slept for the rest of the day and well into the night. The next morning I was on the phone again with all the doctors and their staff setting up the next appointment for the procedure.  My husband was slowly dying and I was not going to be put off. I would do what it took to save his life and get a new liver in him. So again the date was set for May 2^nd everyone in the family was much calmer this time around, and Phillip was much clearer and focused.  They took my husband back at like 8:30 am and told me I could see my husband again in about 3hrs. Everything seemed to be going well. Our moms had gone home and I was sitting there with our son when the radiologist came out about one hour later. I knew it was bad; there is no way they were done yet.  He dropped the biggest and worst bomb. They could not do the TIPS on my husband. The portal vein was TOTALLY BLOCKED. There was nothing that could be done.  I fell to my knees and just cried. My poor son had no idea what just happened and he told me later, “he thought the doctor told me daddy was had died.” It was not until he the doctor took us back to see daddy that my son understood that daddy had not died but something major had just happened. All I could do was cry and pray. I knew that Phillip would be de-listed in AZ.  This was not good news. My family and friends were awesome, they all showed up to the hospital as we waited for Phillip to get out of recovery and break the news to him. Again the procedure was not done and we were going home.

God was still not done with us… We met with our doctor the next day. He told us that he would talk to the surgeon and see what could or could not be done for Phillip but chances are we would be de-listed at Good Sam. He felt terrible and I believe he wanted to cry with us. The next morning he called and said that the surgeon said they would not do the transplant for Phillip and we would need to find another transplant center. They were not sure whether WA could do the surgery or not but they felt  that University California Los Angeles (UCLA) would do the surgery. The transplant surgery suddenly became much more complicated. Urgency was needed!!! I had spoken with WA about the surgery in Feb when the clot was found and our nurse said they do the surgery all the time. There was a 2% chance they would not be able to the surgery but we could discuss that in July when we came back. My only thought was “my husband would not be that 2%.” If they could not guarantee me that they could do the surgery, I would not even waste the time calling them.

We would go to UCLA! I called our mother and told my mom and his mom that we needed to go to UCLA transplant center and get my husband on that transplant list.  I knew that when we got listed in WA State it took three months to see the doctors and Phillip did not have three months to wait so I had a better plan this time…we loaded my very sick husband into the car on Friday May 6^th and drove to the emergency room at UCLA.  We showed up with a very sick man, and I knew all I had to do was get him in the door; God would take care of the rest.  There was lots of confusion as to why were in California but I blocked those questions and demanded to see the liver team. The Medical doctors told us that my husband’s sodium was really low and they would need to admit him to the ICU for the weekend and then on Monday I could drive him home and see the liver doctors at Good Sam. Of course I knew that AZ was done with us and I needed the liver doctors at UCLA to see my husband that weekend.  I knew right then that God created that diversion so I could get my husband in the hospital I just needed to calm down and follow His direction. On Sunday morning as I was walking into the cafeteria I saw a doctor who had the words transplant surgeon on his jacket. I had no idea what kind of transplant he did and I really did not care. I stopped him told him where my husband was and what was wrong and all about AZ and being de-listed. I knew this guy was busy and I must say everything I needed to say as quickly and precisely as possible. He told me, “He would look in on my husband.” Wow, no joke there was a liver doctor in my husband’s ICU room thirty minutes later. I don’t know if that doctor had anything to do with this happening or if our doctor in AZ called the liver team there.  To me it did not matter I did not need the details. I know above all, God took care of the liver team.

The doctor at UCLA said they would love to see my husband again and would invite us back to be evaluated for their transplant list.  We were discharged out of ICU on Tuesday May 10^th and were told that we should be getting a phone call in the next week or so to come back for the evaluation to be listed at ULCA. There was no way I was going to wait to be called back. I was on phone with whoever would listen the next day after flying back home. I know I made a few people upset with my pestering but I did not care. My job was to save my husband’s life. One piece of advice when pestering people is be as nice as possible they are still the ones who call the shots and make the appointments.

We got a call back from UCLA and they asked us to be there on May 23^rd to be evaluated for their list. My husband and I left our home on May 17^th to drive to UCLA.  Our son flew up and met us later that week. Together, Justin and I took dad to all the appointments that were scheduled that week. With a saddened heart we watched dad get really sick that week, but knew there was nothing we could do but put one foot in front of another. On our final day there, they wanted us to get blood work done before we drove home.  When the blood came back they called us and said we needed to go to the ER and Phillip was really sick and his kidneys were failing.  I was already at the ER when they called me.  I knew there was no way we could drive home.

On May 27^th we were put on our third transplant list at UCLA.  They kept Phillip at the hospital for about a week, stabilized him and again sent us on our way. The plan was to go home get some things cleared up and then go back to CA to stay at a KOA on the beach (I know we are funny, but that was the cheapest way we thought we could get it done) and wait for the call that summer.  We knew we were close, and anything could happen at any time. They released us on a Thursday evening, we drove to Palm Springs, CA  & stayed the night then drove home to Phoenix the next day. We spent Friday night and Saturday getting ready to leave for the summer.  That night my husband started bleeding, lots and lots of blood filling the toilet. My mom drove us back to the ER at UCLA (a six hour drive).  We arrived there Sunday morning at Midnight. They did blood tests and his MELD score had risen to 30. I knew 30 was not good enough to get a liver at UCLA but 30 would put us at the top of the list at UW. I was the phone ASAP with the transplant coordinator with WA. Being dually listed is not as easy as you think. Washington told us that there was really not much they could do for us being that we were at UCLA and not in WA. I did not take that news well at all! What were they talking about? I thought that was the whole reason we were dually listed. After playing phone tag all day Sunday and Monday the surgeon at UCLA came into our room and told us UW had called him. He told us we were number one on the list at UW and if that is where we wanted to be, he would get us there – I cried.  Telling us he would get us to Washington was much easier said than done. My husband was totally unstable and not able to leave the hospital and we did not have the money to fly so I told them I would be driving to WA after they release us.  Of course that did not sit well with the physicians because my husband was too unstable to be driven. From what I understand, our insurance would not pay for a medical flight. UCLA would tell me one thing and UW told me another story.  Even to this day I have no idea what happened, but it is not for me to understand at this time.  God works in great ways and He got us to UW – Phillip finally stopped bleeding on Sunday and there was no blood on Monday. Our friends held a fundraiser poker party for us on Sat. night so there was enough money in the bank to fly to UW. Therefore, the doctors released us and told us to get the WA right away. We had a doctor’s appointment the next day at UW. Medically speaking there is no way my husband should have been on that flight. I could not believe UCLA was releasing us to fly and I could not believe our insurance would not fly us to UW. Regardless, my mom drove us (Phillip, Justin and I) to the airport. It was nightmare, I remember very little of the flight. I have no idea how we even got my husband on the plane.  My son told me later that he got sick on the flight, he said, “don’t you remember you had to get me a barf bag.” I still don’t remember that. Our son was with us through it all so I had to shuffle him around so much and I was overwhelmed by my feelings of not giving him the attention he needed or wanted. I dragged him many a nights to hospital rooms to stay the night with me.Looking back our dear heavenly father carried all three of us on to that flight and safely planted us in Washington.

We were picked up at the airport by our friend. He took Justin and me to get something to eat and took us to our room. The next day we took Phillip to clinic.  They took one look at him and rushed him to the ER. They could not believe how sick my husband was.  I was a little put off because we had been on the phone with them all week trying to get them to fly us here.  Anyway, no need to be upset.  They took wonderful care of my husband and after being here 15 days – number one the list, he was transplanted with the perfect liver!!!!!

We serve an awesome God and all the glory goes to Him who carried my husband, Justin and me through our 4 year search.  Things are not perfect yet, but they will get better and every day he takes baby steps in the right direction!! Our God will never leave or forsake us, thank you Father for your son and my husband’s perfect liver. Thank you Father for making me who I am and being the perfect care taker for my husband.

Jeremiah 29:11 For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and hope.

2Timothy 4:7 I have fought the good fight, I have finished the course, I have kept the faith.

11-30-12 Since publishing this story, I have had the opportunity to remain in touch with Cassie…and her “spunck” never ceases to amaze me so I had to post this pic of her “Planking” the potty chair in Phillip’s room a few days post-transplant…this girl is always keeping me smiling. By the way, this picture won “Plank of the Day on some planking website

This is a story of a young mother from Brooklyn, New York who is in desperate need of a liver transplant. She has lots of “skeletons in her closet” so to say; she is not so proud of this fact and probably never realized that it would eventually affect her chances of receiving a transplant. Victoria has lived a tough life. She lost her father at age 12, has struggled with drug addiction, she is a previous rape victim (she prefers the term “rape survivor”), and now she is fighting for her life due to Cryptogenic Cirrhosis. She is also a beautiful mother of an adorable 10 year old son.

Victoria has a love for knitting & crocheting. “People in my neighborhood know me as the girl who makes nice stuff’” Her work has previously been showcased in Arts Insight -”Victoria’s Best Knits” introducing her artistry and many practical and versatile uses of one-of-a-kind hand-made garments and items. Prior to her health decline, Victoria taught the art of knitting and crocheting through private/group lessons and through community outreach. She also worked as a senior legal secretary.

This is a description of receiving her diagnosis In Victoria’s words…..“Not to say I’m an angel…I freaked out…I cried like a baby…having all of my ‘past deeds’ thrown in my face, having ‘strangers’ I didn’t even know determining if I was ‘worthy’ of a liver and life, telling me that there’s people out there who …have NEVER had substance abuse problems & need a liver, so why should I get one, even though I’ve been sober for a year? It made me feel like they were playing God with my life! These are things that I can’t think about because every time I do, I cry & it will destroy me from the inside. My counselor tells me, ‘you have a year sober…all you can do is look to the future’ and I told her ‘but I DESERVE THAT CHANCE TO HAVE A FUTURE! I HAVE A 10 YR OLD SON WHO NEEDS ME”

I have had multiple correspondences with Victoria and although our lives could not possibly be more different, we are also very similar. This is something that before I became terminally ill, I may not have been able to see so clearly. One of our last correspondences was about her son & her concern for how her illness is affecting him…as a mother of a 10 y/o son, I can relate to this feeling and I worry about it daily – I spend so much time trying to keep things as normal as possible (which is almost impossible when I am either in bed or on the sofa 20+ hours a day). Kids are so smart; they know when things are “not right”. I have explained to Trevor to the extent a 10 y/o mind can comprehend about me being sick & that I need a new liver…he has lots of “wild” questions & they come out at the most peculiar times but I make every attempt to answer them as honestly as possible without causing him to worry and believe me, that is not an easy feat. My son has been my highest concern  throughout this ordeal…I want to live and am willing to fight to live but if this is not God’s plan for me, I am prepared for my life in heaven but at the same time, I simply cannot bear the thought of what the affect of my “passing on” could potentially have on my sweet son!

You see, Victoria and I aren’t all that different. We are both mothers who desperately want to live to see our sons grow up & be there to protect them and to share in ALL of the important milestones in their lives and there are just so many milestones left to experience. We are both God’s children. God loves both of us despite our flaws & she is my sister in Christ. I invite you to visit Victoria’s blog “Pre Liver Transplant Jitters” she is quite honest & expresses “raw emotion”…I would describe her as being so frustrated by the “red tape”, and simply so scared for her life that she does come across as being a bit “salty” but she is someone that you have to admire for not “sugar coating” the facts! This is a brutally painful experience and sometimes I find myself trying to conceal that fact in my writings I guess in an effort to appear to be a little less vulnerable than I really am but on the other hand, it is also to keep a positive attitude which along with my strong faith in God, in my opinion, is the only way you can get through something like this. Victoria also shares that she was raised as a strict Catholic and strayed from her faith for many years but has recently strengthened her relationship with Christ. I use the term “strengthened” because I honestly feel like that relationship was ALWAYS there, maybe a little “one sided” for a while but I have no doubt that Christ has always been right there waiting for her to realize it. He will never leave you even when you choose the “wrong path” he is ALWAYS there! All I can say is continue to fight to live and keep the faith Vic!!

We all need to have compassion for others – everyone’s story is relevant…S

If you judge people, you have no time to love them. –Mother Theresa

This is their story in Sara’s words…S

Dad’s health had really started to go downhill in the beginning of January 2009 and things were rapidly decaying from there.  A man who was at a jolly weight of about 250lbs+ (shhh…you didn’t hear that from me) had dropped about 50lbs in the first two weeks of being in the U of A hospital and then shortly after (with the exception of his ascites) became about 140lbs.  But this note isn’t to make you feel sorry for him; it’s to show you how exceptionally strong of a man he is and how important family truly is.

The beginning of the year was mostly struggles with, among other things, ascites, navel ruptures, bowel slipping, malnutrition, etc.  The big thing that affected us was encephalopathy (mental confusion where he basically was unable to think clearly). So we never knew what was going to happen from day to day and constantly had to make trips to the hospital in Camrose or Edmonton. By March 2010, we had gone through all of this without really ever knowing what the next step would be until he finally had his assessment.  This was when they told us that he was officially on the liver donation list.  This process was very interesting as it meant that every week, the team of surgeons would get together and discuss every single patient and move them up or down on the “list” based on priority.  Make no misassumption as we had, and still have, the utmost respect and confidence in the U of A hospital and their doctors.  They were in constant contact and on the ball with my Dad and what needed to be done.  Unfortunately, the list and wait is long mainly because of the lack of organ donors.

In April, we received more bad news when we found out that the liver disease had progressed to liver cancer.  They would still be constantly assessing my Dad, but if he got “too sick” they would have to send him home since they would not want to operate.  Time was not on our side.  However, we were able to get in touch with the Live Liver Donation program and several of us were tested to see if we were matches.  Options were limited as it turned out only two of us were matches.  I got the phone call (what a feeling that is!) saying that I was a match. But since my BMI was too low, they wanted to go with another candidate they felt would be a better match and I would be the backup donor.  Turns out, that match was my boyfriend, Tyler.  He’s a very healthy and strong young man that has a very active social life and is one of the best athletes I’ve seen.  And he was now not only going to donate part of his liver, but give up a big chunk of his year to my dad and my family.

So the next couple of months (we didn’t know when the surgery would be) were spent keeping dad as healthy as possible so he would be able to undergo surgery.  He had appointments to check on the cancer and did a bout of chemotherapy which went better than expected.  Tyler and I kept busy with his own appointments to make sure he could go through with the surgery as it was possible that he or the doctors at any time could pull the plug on the whole thing (and then they would start things up with me).  But Tyler, who is healthy as a horse, had everything go very well and they proceeded to schedule the surgery on August 24^th.

So 5am on the 24^th Tyler and I went into the U of A hospital to get him prepped for surgery while my dad, ready more than ever, had spent the night there. Tyler’s family (who have been incredible throughout all of this) watched him get rolled away into the operating room with my mom and I.  A couple of hours later her and I watched my dad do the same thing.  And then the waiting…it was the most painful waiting I’ve ever had to go through my whole life.  They told us up front that they wouldn`t take the time to let us know if something had gone wrong because that time would be too precious to use calling us when it needed to be used to work on the patient.  Eventually I bumped into a surgeon who told me that Tyler’s surgery went very well, but once they opened Dad they realized he was a lot sicker than they thought.

After that day, the next several weeks were an intense and stressful blur.  Within 24 hours of receiving 70% of Tyler’s liver, dad had started to have complications so they took him in for another surgery. They realized then that this liver wasn`t going to work so they put out a nationwide call for a new liver from a cadaver.  This was going to be tough news for Tyler, so I waited a few days before I told him. I didn’t want him to think that he had gone through all of this pain and sacrifice for nothing, when in fact, it was the exact opposite.  As mentioned, the surgeon said that Dad was sicker then what they thought.  When he was diagnosed with cancer in April, they had only given him about 9 months to live without having a liver transplant. Had they known how sick he truly was he would’ve had less time than that and then they might not have even bothered to operate.  Also, since there are not many organ donors on this side of the country, a nationwide callout allowed my dad to receive a full liver from a distance donation.

So let’s recap: we’re now on the third day and what happens next is actually pretty fascinating.  The U of A has their surgery team and half of them get on a private plane and fly somewhere in Canada to view this liver and make sure it will work for my dad. (And to that person and his or her family, words cannot express how eternally grateful we all are…)  The team comes back to the U of A where the other half of them gets ready for surgery to put this new bit of life in my dad.

I’ll keep the next bit as “un”graphic as possible.  Basically my dad went through 5 major surgeries in the first five days and then another two in the few days following that.  In the first three days they pumped at least 200lbs of fluid in him so at times he was so incredibly swollen that he was unrecognizable. He was coma-induced and on life support for a long time and remained in the ICU for almost six weeks. They have an incredible team of surgeons, doctors and nurses that took care of my dad.

After ICU, dad was moved onto the transplant ward for the next few weeks while he went through an “interesting” hallucinatory phase and started to learn how to swallow again.  He was showing progress and on a few different occasions, different doctors and surgeons told us of their surprise that he had made it through all of this! (Was this supposed to cheer us up??) Dad finally got to break loose Thanksgiving Sunday for a day pass and then officially got out of the hospital October 15.  But mom and dad are kept very busy while they live in Edmonton as they still have to do labs 3 times a week, occupational, recreational and respiratory therapy every day, daily wound dressings, sometimes courses of antibiotics every day, diabetic and nutrition clinics, visits with a speech pathologist, the dentist, a hepatologist and the list goes on and on. But by January 4, they no longer had to stay in Edmonton and could come home!

So since that time, Dad has made many gains health wise, especially in the last few months.  He has been building up muscle and now has the energy for such things as yard work, taking daytrips to different places and basically being the energetic Dad and Grandpa that his family knows and loves him to be.  Tyler on the other hand, has been doing even better! It didn’t take him long to go back to being the “super” athlete that he is! Probably the toughest part of the whole surgery for him was the 3 months of not being able to play sports.  He has had no complications and is back to being as healthy as ever!

My family and I are so incredibly lucky to still have my Dad around.  We owe an infinite amount of thanks to EVERYONE involved: doctors, nurses, family, friends, and of course, our two incredible donors, because without these people, we wouldn’t have this special man in our lives.

Love from Sara

One of our favorite pictures! It truly captivates what kind of man my Dad is.

pic2  – My dad at my sister’s wedding in July 2010 – hard to really get a good look at him, but he

is approx 150# (30# of that being the fluid buildup in his stomach).

pic3 – My 2010 Christmas photo with my parents (approximately 5 months after surgery).

pic4 – My dad with my nephew (taken a few months ago).

My dad with his “live donor” (my fiancee) at the Live Donor Banquet at the end of June.

 Emmett’s story in his wife, Tammy’s words:  My husband lost both kidneys in 2008 due to undiagnosed Diabetes. He has been on Dialysis now since that June, having to spend 3 days a week at 7 hrs per session. Emmett has been waiting for 3 years just to be put on the “Active” waiting list. It is amazing the red tape one has to cut through even when they have reached the Last stage of Kidney failure. He had no notice, no warnings, work one day, hospital bed with complete kidney failure and dialysis the next. Emmett is a 38 yr old husband and father of 2 children 12 & 8. He loves the Lord and works full time as an IT administrator. He has worked hard and long to stay off of disability. He goes to Dialysis for 7 hrs a day, 3 X a week which takes him away from family and friends. It also makes it more difficult to sleep due to being hooked up to the machine and having insomnia, then being at work for 8 hrs. He loves to sing and teach the youth class for the AWANA program at church. Our children pray daily for a working kidney to be given to their dad. In 2009 Emmett developed a diabetic foot disease that caused the bones in his foot to break. He was out of work for 13 weeks and the family struggled financially as well as emotionally. We have had to lean on the Lord to see us through these times and we always seem to come out on the better side.

People believe they must die to give life back, but in fact Living Donation can be used in some instances such as Kidney Donation! God made us with 2 kidneys, I feel for this reason! You can live a very healthy, successful life with only 1 Kidney! Pray about what God would have you do to help save a life. I know God has a donor out there for him…… Perhaps it’s you!

Tammy

Addendum: We had a great meeting with Augusta GA Medical University; they will be evaluating Emmett on Aug.8 2011 for the transplant!! They are a wonderful facility. They do take care of all expenses for the donor, such as transportation, hotel, & Medical work up. If you are interested in being tested as a possible match for Emmett please contact me at akidneyforemmett@gmail.com with your name & telephone. The Augusta Center will be getting in touch with you in the next few weeks.

Addendum: 5/23/12 – After numerous highs and lows while waiting for the perfect kidney for Emmett, today he received the gift of life! Surgery went well and he is in recovery…God has perfect timing indeed!

I waited almost 5yrs. for my lung transplant. I received a double lung transplant at UCLA on 5/6/2009. I would love to hear from my donor family, I’ve written to them, maybe I should try again.
Before my transplant I was on oxygen 24/7 what a hassle, but without it I would not have made it for my transplant. I feel wonderful. I go to “clinic” for routine tests and check up every 3mos.

Karen  – Double Lung transplant recipient 5/6/09

Bill P.

Liver Transplant Recipient

Date of Surgery  May 16, 2011

Cleveland Clinic

My Bio:

I am a 43 Year old Male, husband of a wonderful wife, father of 2 sons and 2 small grandchildren. I am also the owner of a Miniature Schnauzer named Lars. (Or is it the other way around?)

On June 6, 2008 we were preparing to leave for the Beach on Vacation for 2 weeks, but I started getting sick about 3 hours before we were going to leave, and my Temperature went from 101.5 to 105.9 in less than 2 1/2 hours, I went to the ER and was told that my Ammonia level was elevated and I had cellulitis starting in my left leg. I was diagnosed with NASH and referred to a Gastroenterology Doctor. I was told that everything was ok, and just watch what you eat and drink.

I started going downhill fast, and my wife (She is a RN) asked the Doctor what our options are. He told us that I was not eligible for a transplant due to my size. He then said I have cirrhosis, but I shouldn’t worry about it. My wife and I talked about everything and we talked to our Family Doctor, and I was referred to The Cleveland Clinic (I did the research and made the calls, but I had to get a recommendation)

I arrived in Cleveland for 2 weeks of testing in October and had a lot of appointments until December 3rd when I was advised I was turned down for a transplant due to my weight. My Family Doctor called The University of Pitsburgh and I received a call on a few days later I was denied before I even went into their facility. I went back to Cleveland and asked them to reconsider and I was told hat I would need to lose 80 to 100 pounds before they would even give me a chance to go before the committee. I lost the weight that I was told to lose and lost another 40 to 50 pounds on top of what was asked in 4 months time, but i still could not get approved.On December 30th, I was so ill I could barely get out of bed and I was picking up so much weight that I could not wear shoes, I was seeping fluid from my abdomen and legs and my groin was swollen so bad I could barely urinate. I was told that I was in CHF (Congestive Heart Failure) and my organs were shutting down and I was told I would be lucky to live more than a few weeks. I was admitted into our local hospital and I was told by a team of Doctors that I had 2 choices. My first choice was to do nothing, and I might make it 4 weeks to 8 or I could take a chance and allow them load me up with diuretics to remove fluid rapidly, but there was a strong chance that I could have die from a Heart Attack or have a stroke. My wife and I prayed about it, turned it over to God and I asked that he would do as he wishes, because I will live on after I leave this world.   so I sent my files and set up to be evaluated at The Mayo Clinic in Jacksonville Florida, and after being there less than 1 week, I was called by The Cleveland Clinic and I was told that I was approved as long as my heart and kidney functions did not have any significant changes. We left Florida and went to Cleveland immediately. I passed everything but had to be put on hold for a few weeks due to cellulitis issues. While there I also had a cyst come up on my abdomen and it had to be tested and removed before being replaced, so that delayed me 2 weeks. I really thought that I was never going to be approved, but on Thursday May 13th I was put on the list with a MELD Score of 28, but it had been 32 the previous 2 weeks. On Monday May 16th at 8 AM I was told I had a liver, that night I received the Gift of Life and a chance to be a better Christian, husband, father, grandfather, and friend.

Here are a few things someone may or may not find useful

• Never give up, ask questions and do not be afraid to ask for a Second Third or 20th Opinion.
• Make friends with your Transplant Coordinator, they are the eyes and ears of the process
• If possible, dress nice, try to act as if you have no problems at all, walk into the office if possible instead of a wheelchair.
• Make sure to let them know if you have a school, church or friends and family members who will be there to help while recuperating.
• If possible be evaluated at other facilities to better your chances of getting on the list and getting a new lease on life.
• Sodium is not your friend, it will make you swell up bad with fluid
• Make sure and be positive when talking to the Transplant Team during the evaluation, they will give you the worst possible scenarios and they want to see your reactions to “stay in the hospital for 2 to 6 months, and they will also tell you that you may have to be there for up to 1 year.
• Finally, in my opinion, this is the most important bit of advice, turn it over to God, and do not take the burden back. Be patient, and if possible talk to someone from church, or seek professional guidance before and after surgery, everyone I have talked to experienced with some of the medications until you get them regulated, but it beats the alternative.

Bill

Bill - recent liver transplant recipient!