My Transplant Recovery – Phase-1

Yesterday, August 2, 2016 was a huge milestone in my recovery, it was the end of my first phase of recovery – “Home Health”. I was first discharged from Speech Therapy a few weeks ago when I had surgery on my paralyzed vocal chord, then from HH-Nursing last week, then last but certainly not least, Physical Therapy on yesterday. Home Health played such a big role in my recovery. The Speech Therapist was awesome helping me with vocal and swallowing exercises. This was a really big issue for me as with a paralyzed vocal chord, you can not speak which is frustrating and your airway is unprotected. So for me, swallowing liquids without aspirating was extremely difficult. I could swallow most solids and a spoonful of pudding with each pill worked really well to swallow my meds. The vocal chord surgery is an immediate but “temporary” fix – it should last around 6-months and I am hopeful that my vocal chord will heal in that time. 

If I had to choose one piece of advice to give anyone for post-transplant recovery so far, it would be to START MOVING ASAP. This has made the biggest impact for me.  Starting on day one in ICU, I could hardly wait for the PT’s to come in to work with me and as painful as the work was, I knew that I needed to push hard in order to get my independence back. So every day, in addition to their plan of care, I would set a small personal goal for myself and I would ask them to help me with accomplishing that goal – really small things but as small as they were, when I could accomplish them, I felt such a sense of relief. This carried over at home with my awesome Physical Therapist working to help me gain independence by teaching me simple tasks like dressing myself, getting into and out of the chair, shower, & bed, to opening the dishwasher (little things you would never think would be difficult) etc. She worked with me on all the basics like getting around the house safely by walking using the walker, eventually advancing to a cane, she taught me numerous exercises moving up to the use of light weights all to build strength and flexibility and I continue to do these exercises and walk in my kitchen/dining room twice daily for at least 10 minutes. For me personally, my independence is everything so this was a big deal.

Sawyer was ready for this contraption to go away.

Sawyer was ready for this contraption to go away.

The following is a list of some of the other things I’ve learned so far in my recovery process and I’m sure I will learn a lot more as time goes by:

Listen to your transplant team and do exactly what they tell you – they are the experts and your team knows YOU. Remember that the post-transplant recommendations vary from center to center so you may hear other transplant recipients say something different from what you have been told by your team but always follow your transplant team’s instructions.

Stay away from germs! Hand washing and hand sanitizer are your best friends. Remember that transplanted organs are foreign to your body and it is your body’s natural response to fight them. The anti-rejection meds decrease your immune system to prevent your body from fighting against the new organs. But in turn, when your immune system is compromised, it can not fight off illnesses some of which, can cause your body to reject the new organs. So, it is imperative to prevent contact with sick people and to use hand sanitizer & proper hand washing at all times.

Eat healthy and follow your transplant team’s recommendations for diet and food preparation.

Get over saying “yes” to everyone. Taking care of  your precious. “newly recycled organs” and making every effort to prevent rejection of the organ/organs is top priority! If anyone thinks that your “new normal” is “silly” or “overkill”, ignore them – it’s just not worth it. You’ve most likely waited a very long time for this life-saving gift, do not ever take that for granted.

Take care of your incisions as your transplant team instructs you to.

Rest! Your mind may play tricks on you. I have been sick for many years and been able to do less & less over time. But now, I feel better and my mind wants to do so many things but my body is simply not ready – it is hard to believe how tired your body gets from the exercises and normal daily activities. When you feel tired, your body is telling you to stop and rest. Yes, your body needs activity and exercise but it also needs plenty of rest in order to heal so please listen to it… the time will come soon enough to do the things you want.

LIVE and try not to worry. Push fear out of your mind. This is a tough one because with recovery from a transplant, comes a complicated, life-changing “new normal” and there is a lot to learn and remember. Now that I finally feel like doing some of the things that I haven’t been able to do for so many years, I am not to the point in my recovery to do them yet. This sometimes makes me anxious because the fear of organ rejection creeps in from time to time and I worry that I may never be able to do those fun or even simple things with my family & friends. I have to be conscious to push these negative thoughts out of my mind and remind myself to be patient because my recovery is too important to risk anything. It is a fine balance especially as time goes on because most of us go through the transplantation journey so we can LIVE but you do have a lot of new rules & restrictions to live by. My thoughts are to follow your team’s guidelines carefully but try not to obsess on them, you do not have to explain every detail of your life to everyone – just LIVE and take it one day at a time. Worry is a bad habit and causes stress and stress is unhealthy (I’m still working on this one). 

Take your meds! Be careful when you fill your weekly medication sorter and take the time to double-check each & every dose. Set reminders to take your medications as prescribed. Remember these medications are your “life-line” and are the only thing to help prevent your body from rejecting your new organs. This is a BIG part of your “new normal” it must be a top priority.

Check your vital signs and temperature as instructed by your team. This is essential for many reasons including early detection of organ rejection.

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And lastly, Be grateful!!  Wake up with a grateful heart every day even if you are having a really rough day AND you will go through ups and downs! Just remind yourself where you were before transplant and the precious gift of life you have received. This is so important… AND No, it isn’t always easy. Recovery from such a big surgery certainly can be a roller coaster but try to focus on staying determined to push through it – determination and a grateful heart helps promote a positive mindset which in turn helps to lower your stress level. I truly believe that this is essential to healing and overall good health.

My body is in the process of going from one extreme to another so quickly that I can not completely wrap my mind around God’s miracles. Two new functioning organs – my newly recycled Liver and kidney – precious, precious gifs of life! I’m not going to lie, recovery can be tough but I feel so blessed by these gifts that it is worth every bump in the road. No matter what, every day is better than before – reminds me of this old quote…  “I am better than I was yesterday but not as good as I will be tomorrow”.

I know that God is carrying me and my family through this as He has for so many years prior to my transplants. I am grateful beyond measure to my donor angel for making the decision to be an organ donor and for saving my life.

So be truly glad! There is wonderful joy ahead, even though it is necessary for you to endure many trials for a while – 1 Peter 1:6

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor #NewLiverNewKidneyNewLife

As always, many thanks for our prayer warriors out there, you know who you are!!

“You gave me a new song”…

One month update… IMG_4737
“You gave me a new song”… A friend surprised me with this beautiful gift a few days ago – she had it made just for me after my transplants & it says it all. As many of you know, one month ago today, i received the gift of life through the miraculous gifts of organ donation. I received a liver on the evening of 5/26/16 and a kidney from the same donor the following morning. When I woke up, I can not express the amount of happiness and gratitude in my heart.
I have been on a break from social media & my phone (still having trouble with my voice & swallowing due to vocal chord paralysis). Thank God for sweet Stephanie she has been updating my Facebook page & stopped everything to be there when I got “the call”… she is amazing and I am forever grateful! God answered so many prayers. The outpouring of prayers, support, and kind words from YOU ALL has literally humbled Blake & I to tears. We have been so overwhelmed by the kindness & love you have shown our little family that there are no words to fully express how grateful we are… We love you all!!
Recovery has been a bit intense with lots to learn about post-transplant life. Organizing and keeping up with all of the new medications, keeping charts with v/s & blood sugars, Physical & Speech therapy, doctors appointments, and preparing for “the new normal” – it’s been a roller coaster and a bit slower than I expected – I was so sick prior to transplant, my body was ravaged from the effects of having two auto-immune liver diseases over so many years. But with all bumps in the road since my transplants, nothing has been able to dampen my happiness and gratitude to God, my donor, and for all of your prayers and support.
Blake has taken such good care of me, cooking, cleaning, lifting me when I could not do for myself, arranging the house so I can maneuver with my walker, stocked up with hand sanitizer, Lysol, etc, setting up contraptions to assist me in self care & building a platform for my chair, etc so I can get up and down, and taking every precaution to ensure that my body doesn’t reject these precious new organs. And when he went back to work, an army of awesome friends have stepped in taking shifts to stay with Trevor & I and getting Trevor to/from where he needs to be – taking time from their busy lives and families to help us. The texts, voice mails, Facebook messages, cards, letters, etc have touched our hearts & brought smiles & tears… all happy tears!
We are so grateful for my transplant team – ALL of whom are without a doubt “the best of the best”, for our awesome friends (many who stuck by me through all the years taking me to appointments when Blake was working, praying diligently for us, & helping us through a very long, rough road), our church family, & Home Health (the nurses, physical therapists, & speech therapist are helping me so much). I’m getting stronger everyday. I already feel so much better than before – I am so anxious to fully recover and start paying it forward. I’m doing everything they tell me to do but I make every effort to never worry about what might happen, I refuse to spend my “borrowed time” worrying about possible rejection etc. God has been too good to me and I continue to find joy in each and every day He brings and am spending the rest of my life honoring God & my donor for these precious gifts of life!!

“For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” -2 Corinthians 4:17

Alice…

It has taken me a while to write about this for many reasons. You may need to refer back to a post from June 14, 2014 to recall but, I talk about my prayer warrior “Mrs. Alice” who has kept me going through this very long & painful journey.

On May 18th, I was on the phone with Blake when our neighbor and close friend, Karma sent a message letting me know that her precious mother had passed on to be with the Lord. My heart dropped & I began to sob… for the loss of my dear friend, my prayer warrior, one of the few people who never gave up on me and for the grief & pain that Karma, & her family would endure because I know “that pain” and I can not bear to think of anyone going through it especially someone that I hold so dearly. Karma, Scott, Parker, & Swayze are not just neighbors. They are like family to us – it is amazing to look back and see how God puts people in your life – when we can not see it, HE knows our path.

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I knew that Mrs. Alice was sick, and as her health declined, the thick manila envelopes which I wrote about in previous posts had slowed but of course, as the effects of her disease process progressed, she was not able. We were all praying so hard for her never thinking that anything could stop this incredible woman – one of the most Godly women I have ever known. But Alice lost her battle to ALS… just a terribly debilitating disease. I hate ALS!!

I must admit that I had thoughts of self pity too… Mrs. Alice was supposed to be here to pray me through this and as silly as it sounds, it seemed like my personal “prayer warrior” who had an army behind her praying was now gone & all hope was lost.

She passed away on a Monday and Blake & I had an appointment at the Liver transplant clinic on that same Friday. We were both worn out from the last ride on the “transplant roller coaster” – Blake was frustrated with the system, I was just so sick, tired, & broken both physically & emotionally. Same old spill – had labs drawn on the way out & we left.

Apparently, Mrs. Alice was not finished…

On the afternoon of my appointment, I was lying down & I received a call from my transplant hepatologist. Dr. B. said my MELD score was high and my kidney function was worse so he was taking my “active listing” off hold. I walked out onto the front porch because Blake was at the barn. When he saw me, he walked up to me and I told him the news. He held me so tight – the sun was shining on our faces – we were both very emotional and for some strange reason, we both knew this time would be “it”, we could literally feel Mrs. Alice’s presence and I have no doubt that she has her hand in this. You see, what I forgot when I was so busy feeling sorry for myself is she never left, she is not gone, she is living eternal live in the beauty of heaven.

Long story short…

It has been a crazy ride since May 18th but I am “actively listed” for liver transplant and just waiting on “The Call”. Yes, I continue to deal with numerous serious complications daily and I am looking at a really big surgery in the near future and a lot of things have to fall perfectly into place for it to happen but I am on my way to new life! I am almost afraid to even say it. After over five long years of suffering, I can not remember what it is like to “feel well” and I can not wait to see what God has planned for the future!

Mrs. Alice was a beautiful southern lady. Her entire life, she put others before herself. She always made sure that anyone who was sick, elderly, etc were prayed for and that they felt the love of Christ – I was one of the lucky ones who had her praying for me and now I along with so many others are fortunate enough to have her as  one of my guardian angels… what a blessing!!

“For he will command his angels concerning you to guard you in all your ways” Psalm 91:11 (NIV)

In loving memory of Alice Brantley 1936-2015

If you are not an organ donor, please take a moment to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor

Many thanks for all of our prayer warriors out there, you know who you are!!

“Please! Let Me Off This Roller Coaster”…

Up, Down, Up, Down, Flip, Flop, Down, Down, Down, Up??? Going from the excitement of referral for active listing for liver transplant, to finding out that I will possibly need a double organ transplant (liver & a kidney – I was not completely surprised about the kidney – worried? oh yes, very much so! But not completely surprised as my kidneys have attempted to fail twice already in the past several months), to waiting on insurance appeals submitted by my transplant center to consider this center as “in-network” for liver transplant surgery which took several weeks to be overturned, to finally moving forward again, then finding out that my kidney function has improved which was wonderful news but within moments of this wonderful news, being told that this improvement in kidney function dropped my MELD score below the required score for active listing (MELD “Model For End Stage Liver Disease” is the national allocation system for donor livers) …. What???!!! No!!! Please!!! Please do not yank my lifeline!!! I literally CAN NOT BREATH!!! I feel so helpless, so hopeless, all because of this stupid national allocation system for livers which in my opinion, is so incredibly flawed but, It. Is. What. It. Is. The REAL problem is that we have an organ shortage because there aren’t enough people signed up to become organ & tissue donors.

It is not over, only a little set-back – I just have to wait a little longer for my gift. It will all happen in God’s perfect timing. He is carrying Blake, Trevor, & me through this storm and He has been for a very long time now and our faith in Him will not be shaken!

Yes, It has been an almost unbearable week for us – I am still having trouble wrapping my mind around it all & keeping my emotions in check but I know that as I am spinning in the midst of this storm, at some point, the winds will settle. The only choice I have for now is to pull myself up from this deep sadness & anger and to keep pushing forward and most important, find joy & gratitude in each & every day that God brings. I refuse to allow this to break me. Life is way too short so in spite of my limitations, I WILL continue to push forward & LIVE my life even if it is only 30 minutes of sweet sunshine, family time, or whatever. I will continue to take the time each day to be grateful for my blessings & find joy! This morning, it took every ounce of me to do it, but I forced myself to push my feelings as deep inside as I possibly could, I held my head up, put a smile on my face and enjoyed a short breakfast outing with my son before school… baby steps, but they are steps in the right direction!

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1 Peter 1:6 So be truly glad! There is wonderful joy ahead, even though it is necessary for you to endure many trials for a while.

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor

Many thanks for our prayer warriors out there, you know who you are!!

Love, Russell…

russellcuteThis story was submitted by Shana Stanton who made a promise to her beautiful, brown-eyed  nephew that she would advocate for organ donation in his name and from that promise, Russell’s Legacy Initiative was born.  Russell passed way at 11 months old after battling liver failure. The only cure was a liver transplant but sadly, even after being placed at the top of the national transplant list, a donor match was not made in time to save him.

The loss was so unbearable – his family just knew he would survive his battle. Through this family’s intense pain and sadness of losing their precious Russell, they came together to figure out how to move forward through their grief. They chose to find ways to honor his memory and make a positive impact.  Each family member is bringing hope to others by giving back to the community in Russell’s honor and through these positive acts of love and raising awareness, others caught on and Russell’s legacy has been & continues to be honored all over the country in so many beautiful ways …S

You must watch the video clip below to see how much impact one short life has made such a powerful difference by inspiring hope and love. I am personally so inspired by this family’s amazing love: https://www.facebook.com/photo.php?v=10204675350107764

russelllove“We fully believe that Russell had a purpose and we are doing everything in our power to help others realize that they have a legacy to live too. I promised him that I would advocate in his name. I want others to look into his beautiful big eyes and know that it’s the right thing to do.” – Shana Stanton (Russell’s Aunt)

russ98Find more information about Russell’s Legacy: http://www.RussellsLegacy.org

Many thanks to Russell’s family for sharing their story and advocating for organ donation awareness along with their overwhelming positive acts & movements to share their gifts, talents, & acts of love with their community  in order to honor Russell’s memory! You are one amazing family!! I could not think of a name for this post until it hit me that each positive act that is made to honor Russell’s memory comes from Russell… maybe it was his “purpose” for all of this “good” to come from such a short earthly life… so when I see or hear of something that is done to honor Russell’s memory, I will imagine it signed,  “Love, Russell”. I can tell you that those beautiful brown eyes will be etched on my heart forever! #INSPIRED … S

Please remember that 18+ people die waiting for an organ transplant every single day! You can make a difference by becoming an organ donor. If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor

 

Legacy of #65: The gifts of life, the gift of sight…

1555473_10154471561235034_5246153493391853059_nToday, so many hearts are heavy… a parent’s worst nightmare has become reality…it is just not  fair! It is not normal to outlive your children but the parents of Walker Wilbanks will bury their son today. Our local community has been shaken to our knees with the tragic loss of Walker Wilbanks, a Jackson Prep Football Player who’s untimely death has not only blurred the lines of local school rivalries it has touched many hearts and quite possibly changed the way many will live their lives from this point forward because in his untimely death, a light has been shown on the way he lived his life through Christ and by being a friend to everyone… the more I hear about him, the more I realize that the list of awesome qualities that this young man embodied are endless. So many are praying for the Wilbanks family, people are showing up in masses with outpouring of love and support for them in their time of sorrow.

I saw this quote below on face book that someone posted about Walker’s visitation last night:

“As I look around this “visitation” room, I am reminded that FRIENDSHIPS are fluid and amorphous and spiritual things….and they do NOT exist in hierarchies.
Thanks be to GOD that Walker Wilbanks knew that truth and lived it!
I think I’ll call this a FRIENDSHIP room for tonite.”

I thought this quote was so beautiful because one thing that so many have said about Walker is that he was a friend to everyone &  everyone loved him. I did not personally know this family but along with many others, I have read story after story about Walker and how he was a fine Christian who lived his life the way we all hope and pray our kids will… he was apparently one awesome young man.

My mind was spinning over the weekend with the news of this kid who was playing football under the smoldering hot Friday night lights one minute & fighting for his life the next… everyone was praying for a miracle but Walker’s prognosis was very poor. On Monday afternoon, Walker passed away and on early Tuesday morning, I received a call from a dear friend who knows me very well and she knew how badly I would want to hear that Walker’s family, in the midst of their unbearable loss, had made the decision to give the priceless gift of life by donating his organs. You would think that this would be the very first thing that I thought of being such a huge advocate of organ & tissue donation awareness. But, the reality is, I am a parent first and honestly, all I had thought of until that moment was this family’s  unbearable loss. But, when I heard the news that Walker’s heart went to 14 year old boy, and he saved several lives through organ & tissue donation… and yes, he also gave someone the gift of sight… the tears began to flow. I thank God for the amazing grace that this family has shown with these most precious gifts. I think about the fact that the Wilbanks family should never have had to “outlive” their son then I find some comfort in knowing that Walker will “outlive himself” through others. What an amazing gift… the gift of life!

“To be an organ donor is to take that seriously, literally. It says that I am willing to take what I can no longer use once freed from this body and give it as a gift to somebody who may need a part of me” – Steve Casteel “Down To earth”

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor

Continued prayers for comfort & peace for Walker’s parents, brother, family,  Jackson Prep family & friends through the grieving process… S

 

Cartoon by: Marshall Ramsey, editorial cartoonist, speaker, writer

Cartoon by:
Marshall Ramsey, editorial cartoonist, speaker, writer

 

Lipstick & Sunglasses…

One of the things that my mom always told me was…. “no matter how bad you look or feel, as long as you have a pair of sunglasses, a pretty shade of lipstick, hold your head up, & smile and you will be okay”. I remember so clearly before she passed away as she was suffering with the horrible involuntary jerking & twitching caused by Huntington’s Disease, she would have that lipstick on and I mean She. Was. Wearing. It! I would walk into the nursing home and she would have lipstick all over the place – sometimes, ear-to-ear. but it made her feel good about herself so that is all that mattered to me!

My mom, Trevor & myself 2006

My mom, Trevor & myself 2006

A few weeks ago two of my dear friends from church Ava & Rhonda took me to visit my friend/our friend, Amy who moved away about a year ago.When Amy moved, I was crushed – it is amazing how much you realize the importance of true friends when you are in the midst of a storm & when Amy moved, I was devastated. I was so deeply touched by the fact that my friends knew how much this trip would mean to me & believe me, they went to a lot of trouble to make it happen… Ava had been planning this for months! So needless to say, I was really looking forward to this weekend visit! But in all honesty, in the time leading up to the trip, I was not my best… long story but, for several months now, my kidney function has been going down in addition to and because of my failing liver. I have been struggling with this because I certainly do not want a double organ transplant (liver & kidney) although this has become more common since the MELD scoring system was put in place in 2002 by UNOS as the standard algorithm to allocate livers which in my opinion, is far from perfect but I will not bore you with that long discussion today.

Anyway, On the day we were supposed to leave, my team wanted me to go into the hospital overnight for an albumin infusion to help increase the blood flow to my kidneys… I really felt fear that I haven’t felt in a very long time. Blake was offshore & I honestly did not know how I would make it on the trip and I did NOT want to go to the hospital but one thing was certain. I was not missing this trip… in all honesty, I was so afraid that I might not be able to handle the long car ride but I really did not want to miss this opportunity. My friends had taken off work and had been planning this for months and it was only for two nights so I begged my team to let me wait until Monday (just two short days) and they agreed as long as I decreased my diuretics while I was away & report to the hospital first thing on Monday for labs & prepared for an overnight hospital admission for the infusion. Blake, who was already worried that I would not be able to handle the trip, was helpless because he was offshore & of course, everything that could possibly happen, did (more long stories) but I just kept pushing forward because I was determined that I was going! I did eventually tell Ava & Rhonda about my kidney function but I downplayed the situation because I did not want them to back out.

I really do have such awesome friends… they really made sure that I was comfy on the ride… I was able to lie down in the back with cool A/C & when we made it to Amy’s, we just hung out, ate dinner at her house on Friday evening then went to a movie & dinner the following evening… it was a very relaxing, low key, trip but unfortunately the “lipstick/sunglasses” trick only works for so long & my sweet friends got a “small glimpse” of my daily life that I try to so very hard to hide from everyone… they had to pull the car over a few times because I was sick etc. very embarrassing to say the least. But for the most part, I held up pretty good, I was just so happy to be there & really enjoyed myself more than I have in such a long time… we shared lots of laughs & I strongly believe that laughter & friendship is the best medicine. But bottom line, I have now become blatantly aware that I just can not handle long trips or much of anything else anymore… actually, I haven’t for some time but my limitations just seem to be growing as time passes. They were so kind & not in a “pity way” (they know me well enough to know that I would not like that). It was a great visit for me and very special, precious memories were made with very special & precious friends. That being said, I don’t think they will be planning anything that involves travel with me until post-transplant… but when that time comes, hang on tight because we are going on a BIG trip and are going to have a BLAST!!!!

Ava, Amy, Rhonda, & me

Ava, Amy, Rhonda, & me

Me & Amy

Me & Amy

 

 

 

 

 

 

 

 

 

The good news: my kidney function had improved by cutting the dosage of my diuretics & I was able to go home instead of spend the night in the hospital! But, there is a “catch”… why is there always a stinking catch???… I tend to get fluid overloaded very easily so they’ve recently had to increase my diuretics to help with this which is hard on my kidneys. The goal is to keep my kidneys functioning until I can get my liver transplant so I am taking this day by day.

Getting back to “lipstick & sunglasses”. I recall our Ash Wednesday service this year and the message really hit close to home for me. The message was specifically talking about lent and when you choose to make a 40-day sacrifice, it is a personal sacrifice & outwardly complaining about the negative effects of this sacrifice to everyone who will listen is not what it is about. God does not want us to show our suffering in front of others. I am certain that I am losing something in translation here so please don’t hold me to my recollection word-for-word. I just remember sitting there listening to this awesome message and feeling it resonate with me and my current health situation and how I have become accustomed to my “new normal” after being sick for so long now by making attempts to cover my illness publicly.

Matthew 6:16-18
16 “When you fast, do not look somber as the hypocrites do, for they disfigure their faces to show others they are fasting. Truly I tell you, they have received their reward in full. 17 But when you fast, put oil on your head and wash your face, 18 so that it will not be obvious to others that you are fasting, but only to your Father, who is unseen; and your Father, who sees what is done in secret, will reward you.

If I leave the house, I try to look as put together as possible & yes, the lipstick & sunglasses are an important piece of this facade. This journey has been so long and to be honest, I probably would never leave the house if it weren’t for Blake & Trevor – it is so important that I make every effort to spend time with my husband & my son who is involved in so many activities and I want to be there for everything although, sometimes not being there is unavoidable. I just want my kid to feel like things are “normal” & mom lying in the bed or sofa sick all day, dealing with the effects of hepatic encephalopathy, weak, in pain, vomiting, dealing with shortness of breath , the list is endless… this is not “normal” – he needs to see me in everyday situations & to feel confident that everything is ok. I want him to remember that I was once strong & intelligent – not this weak, sick, sometimes confused person etc. that I have become. I’m sure that people may notice if my clothing is a bit wrinkled or my hair looks as if I have been asleep because I usually have been but I do the best that I can. There are always gonna be folks who judge who have no clue about effects end stage liver disease. If I have a day with more than one thing to do, I try to get dressed early & rest between activities & sometimes, I am honestly too tired to put on my cutest clothes & apply make up and a LOT of times I have on gym shorts & a baseball hat and of course, lipstick & sunglasses and always a smile.

I do feel that suffering in private is necessary for my own personal survival in many situations by avoiding being the center of attention by not constantly focusing on my illness and making attempts to move forward with some normalcy. It is so very important to remember that everyone has something and it could always be worse.  But then again, sometimes we need our friends & family  – “our support system” and that’s okay too. No matter what your journey may be, we must all find our own “Joy” each and every day or we will have none and most importantly remember to praise Him in all circumstances!

1 Thessalonians 5:16-18 NIV – Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

I have this incredible platform to raise awareness for the need for organ donors – my blog,  “Faces of Hope for Life”. This is the place where I share my journey and I tend to “put it all out there”.  It is where I share stories of hope submitted by others with a goal to put a face on the < 120,000 people who are holding on to hope while waiting for organ transplants. This is all an effort to raise awareness of the need for organ donors. So with this platform, I am not exactly “suffering in private” but I believe that God expects us to utilize our gifts for good and with 18+ people dying every day, I think raising awareness for the need for organ donors is a good thing & I pray that with this blog, at the very least, one person will become an organ donor & many lives will be saved.

This was the sunset after dinner on our "girls trip" The perfect ending to an awesome time with great friends!

This was the sunset after dinner on our “girls trip” The perfect ending to an awesome time with great friends!

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives. #Hope #BeAnOrganDonor

I am NOT Janet Smith but I AM Redeemed…

 Jessica is a young mother who is fighting for her life. She submitted her story  of hope today after learning that her 14 year old son was diagnosed with Type-1 Diabetes last week which is what led her down this path. She wants to get the word out & help spread awareness. The constant ups & downs of battling red tape and at the same time getting sicker trying to get listed for a solid organ transplant is not a great place to be and that is putting it mildly because the odds are against you due to the lack of organ donors, there is a shortage and for every organ, there is specific criteria to be met in order to be listed ie: “red tape”  the process is unrelenting then you wait to actually get the organ and in Jessica’s case, she needs two organs, pancreas & kidney… everything must fall perfectly into place. It is like being being in the middle of a nightmare on the roughest & most miserable roller coaster and you can’t get it to stopS

DSC08703At 9yrs old, I was diagnosed with Type -1 diabetes. I was in denial for a long time. I refused to take my insulin and test my blood. This stage of denial carried over into my teens. At 16, my doctor told me if I don’t start taking care of myself, I will be on dialysis at age 30! I thought to myself “30 is so far away”. Well, it wasn’t. Age 30 came and I was diagnosed with End Stage Renal Failure. I have jumped through hoops and have done everything I can to get on the pancreas/kidney transplant list. One day as I was sitting in my dialysis chair, my nurse brings me a paper. It says “Congratulations! You have been approved for transplant”. I was so happy and began to get tears in my eyes and as I was just getting ready to text my husband to share the the good news, I look up and at the top of the paper it says Janet Smith (I am not Janet Smith). I start to cry and the nurse comes over says whats wrong? I showed her the paper.she said sorry then went over and picked up my paper that said “We are sorry to inform you but, at this time you are not approved for transplant”. My heart broke. But now, after 4 long yrs, I have finally been approved and am awaiting my transplants. I have something to look forward to which makes me very happy. Last week, my 14 yr old son was diagnosed with type 1 diabetes. I promised him I will take care of him so he doesn’t turn out like me. I am redeeming myself .

Diabetes is a leading cause of kidney failure. The teen years are probably the most difficult for diabetics as far as being compliant with your care because it is a chore and you feel so invincible at that age. Wishing Jessica and her young son the best of luck and prayers for “The Call” to come soon. Keep us updated on your kidney/pancreas transplant... S

“Seems like all I could see was the struggle. Haunted by ghosts that lived in my past. Bound up in shackles of all my failures. Wondering how long is this gonna last? Then you look at this prisoner & say to me – son. stop fighting a fight that’s already been won!”

“So I’ll shake off these heavy chains, wipe away every stain, now I’m not who I used to be! Oh God, I’m not who I used to be. Jesus, I’m not who I used to be! I Am Redeemed! I’m redeemed! You set Me Free! I am Redeemed! Thank God Redeemed!”

Click to listen to… – Big Daddy Weave – Redeemed

So my life is still on hold. But is it really?…

Okay, first of all, I am committing to at least one post on my journey of hope per month… easier to write, read, & just more efficient altogether. So hopefully, this will be the last of the “long-winded” blog posts.

Somedays I look back and can hardly believe that I am still on this journey & I say this not really knowing exactly what I mean because I am still here by the grace of God… I was certainly not expecting to be… but I am. God has brought me here to this place for a reason & I try to push back feelings of defeat & hopelessness and find my joy & be more grateful every single day. In the midst of this constant turmoil, I am making a conscious effort to push through and make a difference by helping to promote organ donor awareness then of course, there is my #1 priority, my biggest joy, Trevor who has had so much going on this Spring with confirmation classes, tennis, Jr High Rodeo, school projects… the list never ends. I was able to attend some of his tennis matches, and although, I missed several rodeos because they really take a lot out of me… we are fortunate to have great friends who made sure he did not miss many rodeos when Blake was off-shore and kept me updated with constant text updates & video clips. How on earth did we ever get by without iPads?

To miss any of his activities is painful for the mom who never wanted to miss one thing… but it is okay.. it just has to be okay!
Team Roping with Harris DooleyIn my last update, I was in the midst of serious complications that had developed and/or worsened  mainly issues with esophageal varices leading to horrific swallowing issues… I was having procedures every few weeks to band the varies in order to prevent bleeding & I honestly thought I would never make it through the painful swallowing and choking from scar tissue which has developed from multiple bandings of my varices… after my update I underwent several more banding procedures, but my transplant hepatologist  finally had a window where the esophageal varices were small enough for him to dilate my esophagus a little but it did not work so for almost two more months I continued to suffer with this in addition to everything else! But here is the amazing part… those of you who know me well, know that I believe in miracles & I believe that there are angels everywhere. Someone once told me to be very specific with my prayers – I can do that and I feel like I am specific in my prayers for Trevor, Blake, etc but when it comes to me, let’s just say that I tend to be more vague when I chat with God about my own issues after all, He already knows right?? I talk to Him all day – everyday… I call out to Him, I complain to Him, I thank Him, I bargain with Him, the list goes on & on & on. Okay, so getting back to a miracle & an angel who happens to be one of the most Godly women I know & she knows everything there is to know about being specific with your prayers – sweet, sweet Mrs. Alice, who through this very long journey, has been relentless in praying for me & my little family! Every month or so she sends me a big manila envelope full of devotional readings, magazines, scriptures,  DVD’s of her church sermons, & a card with words of encouragement – I love it when I open the mail & see that big envelope – I can’t describe in words the effect it has on me… she takes the time out of her busy schedule to do this for me and I am so humbled by it… seeing that manilla envelope never, ever gets old! Her friends, and she has a LOT of friends – I like to call them “Mrs. Alice’s Prayer Warriors” also still send cards to this very day. During this time when I could not swallow without excruciating pain or choking, she would often let me know that she was praying for my “throat problem” as she would call it. She knew my “most specific need” & was praying specifically for that. Well, long-story-short, one day out of the clear blue, I could swallow with little pain & without choking…  it was as if God literally touched my strictures & released them. I still have to be very careful when I eat but there is no pain and I rarely get choked. Now, I realize that with my next series of procedures to band esophageal varices, these issues will most likely re-occur  but this “miracle” helped remind me that God has this & I have faith that He will continue to carry me through it all no matter how long or rough the journey, He has this.

Phil.4:6­7 NIV –  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Now, I also want to make it very clear… when I brag about Mrs. Alice, I am not taking anything away from my network of amazing friends & family who pray for me & would be there for me in a minute if I called and some of these folks are people who I rarely if ever see but I know I could count on them because they are my true friends who love me for who I am… the good, the bad, & the ugly of Suzanne and I love them all & cherish their friendship more than they will ever know. I network with some folks who have suffered for so very long with sickness and I hear some say that they feel like they have been abandoned by their friends & family and they feel so isolated & alone. This is heartbreaking to me because although I can relate to what they are saying, I just do not feel that way at all. Yes, this is a very isolating and lonely experience for me for many, many reasons but I do not feel abandoned in any way. I do not need to hear from people all the time especially regarding my health. (I love to hear what is going on with others but I get tired of being consumed by sickness and like to feel “normal” sometimes). I mean seriously, after a while, life. goes. on. and I wouldn’t have it any other way because I am very uncomfortable with pity in any shape or form unless, I am having a “private pity party” of which, I limit myself  to very few & on the occasional times that I allow myself to go there, after I a pick myself up, I punish myself with as much guilt as one can possibly put on themselves. After all, there is always someone worse off than me. Everybody has something!

… I honestly did not think it was possible to feel any worse but I do, I am so much more easily fatigued and weak. When Blake & I went for my latest appointment at the Liver Transplant Center and we discussed how much worse I feel – no energy, increased ascites, shortness of breath, nausea & vomiting,  joint pain, body aches, abdominal pain, & how much more difficult it is managing fluid overload & leg cramps and/or sometimes full body cramps from trying to offload fluid & tweaking meds to prevent a hospitalization blah blah blah… but the bottom line is – They. Hear. This. All. The. Time. from so many others who are desperate for relief but there is really nothing they can do to “fix it” with the exception of a transplant. So they tweak medications for side effects, schedule procedures to temporarily alleviate or avoid serious complications, and make recommendations for unconventional methods to “help get you  through the suffering” until your MELD score rises to the point that is necessary according to the “national standards” which were set to allocate organs (specifically livers) to those who are the very sickest in your region because there are simply not enough organs to go around. This usually means one of several things, you could die waiting, you could get too sick to be listed, you could die post-transplant because your organs have been so ravaged by this disease, OR by the grace of God, everything falls so perfectly into place that you get a new liver and a new lease on life – ie: “Miracle” which I fully expect to happen in HIS time.

…Blake & I  leave the transplant clinic… me, feeling so defeated and Blake, so very angry… our feelings are not directed at the transplant team – they are amazing but rather the situation… It is just so frustrating to know that there is nothing to do but wait. One good thing that came out of that visit is that my MELD score was 2 points away from “active listing”. So getting sicker = one step closer to transplant.

photoI have a few “good hours” on most days so I try to schedule my medications, rest, everything that it takes for me to get through a day around those priceless hours & pray that I make it through whatever I need to do without getting sick and hopefully I can look “put together” well enough to hide my pain & most important smile through it. I recently became a “Donate Life Ambassador” – that may seem like a very small goal for a former over-achiever but with my “new normal”, my personal goals and accomplishments are very different now – some days, my goal could be simply getting dressed and maybe applying a little make-up. But, I am as proud of myself if not prouder if I complete these tasks & goals no matter how small  than any degree that I have hanging in the office. Funny how the roads in our journey can change our perspective on what is important.

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Trevor won first place in Donate Life 8K (19 under)

 

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Above everything that has happened  recently, my greatest joy is that Trevor was confirmed in his faith in our church – the very church where I was baptized, where Blake & I were married, where Blake Trevor were baptized together at Trevor’s infant baptism, and where we held my mother’s memorial service when she passed on. But, on this day, I was standing in our church along with Blake at Trevor’s side to lay our hands on his shoulder as he made this commitment confirm his faith in God. I WAS THERE with awesome friends & family, I was not struggling through it or feeling sick – I felt wonderful… I will not get into detail on the amount of prayer & bargaining that went into accomplishing this one – another answered prayer and another goal met!

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So although my life is very different than before, the bottom line is that it is not completely on hold… I am simply blessed beyond measure!

1 Thessalonians 5:16-18 NIV – Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

If you are not an organ donor, please take time to check out the section on this site Organ Donation Facts & How You Can Become An Organ Donor. There is a link to Donate Life America to sign up – it only takes a few minutes and you could save as many as 8 lives and enhance up to 50 lives.

The Wave – “We Are All Vital To Each Other”…

This is a story of a young man who realizes the fragility of life all too well. Cameron was diagnosed with an auto-immune liver disease over a decade ago at age 13 – his parents were told that the only cure, would eventually be a liver transplant. The time has come and he now needs a liver transplant in order to survive but in reality, he knows that with the organ shortage, the odds aren’t on his side. But fate intervened & his brother, Jared is a perfect match. His transplant is tentatively scheduled for February. But that is only the beginning of Cameron’s story. He and his brother are starting a “Wave” to increase awareness & in my opinion, it Rocks! Check it out… S
Cameron’s story in his words:

Cameron with his girlfriend, Stephanie & Brother, Jared

Cameron with his girlfriend, Stephanie & Brother, Jared

Jared & I are brothers, born 3 years apart, exactly to the day, yet our birthday isn’t the only fascinating connection between to the two of us. You see, I was diagnosed with a rare autoimmune disease, primarily affecting my liver, just over a decade ago. Although my family and I have faced much hardship over the years, things took an unfortunate turn this past August when my doctors explained that they had spotted a tumor on my liver and my disease had been consistently progressing. A liver transplant has now become vital in order for me to continue my life. Due to the high demand of organs regardless of my critical state, I am no where near the top of the list. When doctors posed the idea of undergoing a living-donor transplant (where someone donates 40-60% of their liver, having both the donor & recipient’s liver regenerate to full size) my older brother, Jared, jumped at the opportunity. As fate would have it, he was approved and we are set to undergo the transplant operation this upcoming February.

Cameron with his Girlfriend, Stephanie

Cameron with his Girlfriend, Stephanie

Currently, on average 18 people die every day while awaiting an organ transplant and every 10 minutes another person is added to the waiting list – (organdonor.gov). We believe that these numbers are inexcusable and we’re doing everything in our power to change that. It all begins with our documentary. So how are we going to do this? It’s simple. We are going to film a raw, real-life depiction of what it has been like for us and our family during this time of adversity, just as it is for the nearly 78,000 other active transplant candidates. This documentary is the first step in introducing our brand “The Wave Set, thus educating the world that we truly are vital to each other.  — Cameron

Like many of us who know the reality of the organ shortage,  feel the pain of knowing that your only hope for survival is an organ transplant and have the desire to increase awareness of the need for organ donors, these guys are launching a life saving movement. Check it out, you will be inspired… S

http://www.indiegogo.com/projects/the-wave-set-documentary

The Lesser of Two Evils…

The past few months have been a challenge for me because I constantly talk about joy & hope but honestly sometimes, even with my best effort it is difficult to feel it. So much has been going on with school starting,  kids activities, and dealing with my constant health issues that trying to balance it all is just plain difficult. Heck, it is difficult to juggle everything for healthy folks and yes, I realize that everybody has “something” going on so I really believe that although it may be different for me, it is not necessarily more difficult… the challenges may just be different. My new transplant hepatologist has been staying on top of things and I am so very grateful that God led us to him. I mentioned in my last post that my health issues have become more complicated by the negative effects on my body from portal hypertension which is caused by my diseased liver’s poor function which is a direct result from cirrhosis of the liver… (If the vessels in the liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops. This increased pressure in the portal vein may lead to the development of large, swollen veins (varices) within the esophagus, stomach, or umbilical area. Varices can rupture and bleed, resulting in life-threatening complications). I have developed esophageal varices and portal hypertensive gastropathy (another complication that causes the lining of the stomach to be frail & easily bleed). Diagram of effects of portal hypertension:

I have had three procedures over the past eight weeks to “band the esophageal varices” in an effort to prevent the potential complication of hemorrhaging. With each procedure, I have progressively had more & more difficulty with painful swallowing and food getting stuck which is very scary & painful. Yesterday, I had another banding of esophageal varices scheduled & before he started, I talked to Dr. B about this and he said that he felt that I may have developed scar tissue from the multiple bandings and more than likely have an esophageal stricture which is causing the difficulty swallowing & if I have more varices, he did not feel comfortable banding them and dilating my esophagus at the same time so the choice was either take the HUGE risk of “bleeding out” or eating soft foods until it is safe to dilate the stricture. So… that leaves NO choice so the bottom line is “the lesser of two evils”… Yep, the esophageal varices were there & had to be banded again and he did indeed find a stricture so I will have this procedure done again in a few weeks & hopefully then, I will be at a safe point to have the esophageal stricture dilated. Praying for a reprieve from the esophageal varices at least long enough to get the stricture dilated. Although I am nauseated MOST of the time, I love to eat when I can & thanks to the wonderful anti-nausea medication, Zofran, I can keep my food down most of the time now.   IMG_2463 IMG_2466Trevor is doing well in school… he is such a good kid… he sets personal goals for himself and works so hard to achieve them. He is doing well in Cross Country & is roping like a champ – he enjoys competing in the rodeos… he loves God and is growing spiritually which makes me so proud. My nephew, Hunter is playing soccer and enjoying first grade. As for Blake, he is my rock and my best friend… I’m not one of those who try to pretend that marriage is a fairy tale… marriage can be tough & yes we have our trials but we work trough them together and although life has been sending us some really tough blows for way too long now,  our love is stronger than ever.

Fall is my favorite time of the year and our little town has a huge flea market every year in May and October with vendors from all over the country…. my favorite time to go is October because it is cooler outside & you can find a lot of cute seasonal items. It is a “work-out” to attend because it is really spread out so I rarely get to attend lately but Blake offered to take me…we went early and only stayed an hour (it takes ALL day to see everything) but I found a new piece of wind art that I absolutely love. I am lucky to have a hubby who will take me to the places that I love to go and doesn’t mind carrying my ridiculously large & overloaded purse for me when I am unable.

IMG_2454 My doctor recently told Blake & I to try to enjoy each day and try not to worry about the future… I think of all the things I want to do “just in case” but I am not really able to travel or plan a big outing because I am so exhausted & weak on most days but the “little things” like attending the kids sporting events or attending a movie, hanging out with family at home, etc do bring me so much joy… and I do have faith that God is leading us to victory over this illness one day so I will continue to pull up my bootstraps & pick myself up when I am down until this day comes. IMG_2483

 

As for Joy & hope, I still have both! Although, from time to time, I find myself feeling hopeless, I will NEVER give up… I look at my family every day and am so grateful for my blessings. For now, I am going to try to find some joy in eating creamed potatoes & Chocolate Ice cream! 15094_600877469955784_1228357821_n

Gifts of Life, Through Unbearable Loss…

This is a story of a young woman who made a difficult decision to donate her infant son’s organs in the midst of her unbearable loss. Through her grief, she found a way to honor her son’s memory by allowing others to live on through him… S

This is Elena’s story in her words…

Three days of labor I finally gave birth to a 7lb 5 oz baby boy which I thought to be the happiest moment of my life but it also turned out to be one of the worst times of my life. Shortly after giving birth, the doctors told me that he wasn’t receiving enough oxygen to his brain and soon after he started having seizures . At the tender age of 18, I had a lot of tough decisions to make and at that point I wasn’t too sure of anything except that I wanted my baby . After doctors did everything they could for my son. on February 16 at 10:15 he was pronounced brain dead , of course I did what every mother or grieving parent would I CRIED until I couldn’t cry anymore. The pain of losing my baby boy was unbearable I was lost and didn’t know what to do. To carry a child for 9 months and not be able to carry that child for the rest of their life is not a good feeling but in my rough time I met a wonderful lady named Judy and she suggested organ donation even though his young little body couldn’t help a lot of people I knew he was gonna be able to help somebody, I did not like the thought of another parent going through what I was going through, so I was all for organ donation, a lot of people questioned my reasons for doing it but I felt as if I couldn’t have him physically be here I would still want a part of him here. It has only been about 6 months since I endured this pain but I have grown and learned a lot from it and I also met some wonderful people who understand and know my pain all so well . They gave me hope to want to move forward when I thought I couldn’t. Now I’m 19 and looking for brighter days to come. No,  I’m not over it but I have found ways to cope with the lost of my first and only son. So if anyone wants to know. Yes, organ donation can be beneficial to not only you but to the families of the recipients because they are all so grateful my name is Elena Santiago and this is my story ♥

Elena submitted her story only six months after losing her precious son and is trying to move forward by coping with her grief. I pray that by sharing her story with others, Elena can begin to find comfort in knowing that the recipients of her “gift of life”  will forever be grateful the positive impact of her selfless decision is immeasurable… S

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Making Changes…

Change can be scary, painful, overwhelming, or change can be great but we have to go through changes in life in order to grow.

It has been quite a while since I have posted a blog in my journey of hope. This has been a long journey… much longer than I ever expected and sometimes it can be redundant. That being said, there have been some positive changes in my care & although change is sometimes overwhelming & scary, it is part of growth. My husband, Blake & I have contemplated me switching to a new transplant center for months and months. You see, living 4 hours from the center is not a comforting feeling especially when the transplant hepatologist tells us that “generally with your specific health issues, when your liver fails, you will probably spiral down very quickly so do not try to get here, go to your local hospital first”. Well, I have seen too many friends die waiting to take that chance. Over 2 years ago, he sat down with Blake & I and gave us his opinion that we are looking at probably one year prognosis and essentially told us that he can not do anything to improve my liver so his goal is to manage my complications/side effects until transplant and for those of you who are not familiar, the complications & side effects from this disease are brutal & debilitating both physically and mentally. I could go on & on but the bottom line is that although the center is a great one, we honestly felt that with my health issues & the distance to the center, the odds of me ever receiving a new liver were definitely stacked against me. I almost felt like I was given a death sentence & have been living with that hanging over my head for far too long now and personally, I prefer to live with HOPE. I network with a lot of pre & post transplant folks & this problem is quite common… there simply are not enough organs to meet the demand so you live with the complications until you die or are fortunate enough to get a shiny new liver. I realize that I had to make steps in the right direction to at the very least, increase my odds of winning the transplant lottery. I have always been told that if you want change, you have to be pro-active… problem is, I have been so physically & emotionally exhausted, the thought of switching centers & risk hearing the same BS or even worse, burning bridges, that status quo would have to do for a while.

Well, God has a way of stepping in & HE definitely has. Amazing how things work. I received a call from a family friend last Summer. She attended a wedding the previous week & ran in to her friend who just happens to be the new transplant surgeon who moved to our area a couple of years ago to re-vamp our transplant program, specifically liver transplants & she told him about me & he gave her his contact info to pass along to me. It has been over 20 years since a liver transplant was performed here. I had  previously read about this surgeon whose extensive training & credentials are most impressive and his plans to re-vamp the transplant program definitely sparked my interest but I was at a great center (despite our concerns) so I was ambivalent about contacting him… I also knew that he was still working on getting everything in order such as recruiting the best team & re-vamping the current transplant program and was still awaiting approval from UNOS to perform liver transplants so I did not contact him until early this year. I was lucky enough to be privy to some inside info before it hit the papers & local news that UMMC had been approved by UNOS for Liver transplants. So I emailed him with my records & liver biopsies and asked him if he thought it was feasible for me to switch centers and if they could get me on track for transplant & he responded within a few days with a “yes” and set me up with the transplant hepatologist.

“The will of God will never take you where the Grace of God will not protect you”

This has been the best move that I could have ever made. I have been a nurse for 28 years I have functioned in a number of capacities including management and process improvement & I have been to many, many physicians in my life but have never experienced anything quite like this. Everything is so efficient and the chain of communication is awesome. When Blake & I walked into the exam room, Dr. B, the transplant hepatologist & his nurse, Evelyn (who I have known for years… it is always such a relief to see a familiar face) were sitting in the room waiting for us…that was a first. Dr. B was extremely thorough with his exam and he took the time to listen to us. My situation is complex because I do have a lot going on but this guy “thinks outside the box” he ordered multiple tests (he ordered 23 lab tests in addition to several scans & another liver biopsy).

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Although I am much better now, I have to admit that I was at my lowest point emotionally for the longest time during all of this. the dreaded results of the the numerous tests were not great & that is putting it mildly. I have developed more serious complications from my auto-immune liver diseases (Auto-immune Hepatitis overlap syndrome with Primary Biliary Cirrhosis) due to the fact that it has never gone into remission & has been wreaking havoc on my already, seriously diseased liver all this time therefore, I have developed the serious complications that come with portal hypertension and yes, my liver biopsy is worse. But above all that, the real kicker was that one of my bff’s, Amy suddenly moved to Ft Walton Beach Fl because her hubby got a better job… I honestly thought I might lose my mind over that one. Amy is the friend who treats me like anyone else not like some sick, weak, invalid. We go to lunch, breakfast, or a movie & I know that she notices that I feel terrible, I am short of breath, or am struggling to walk, sit, or stand due to the severe joint pain but she doesn’t constantly ask me “are you feeling ok?” “Can I get something for you?” being with Amy is my only sense of “normal” Amy took me to my doctor’s appointments when Blake was off-shore & that is a BIG deal because not only it is a 4 hour drive one way but I am a bit of a control freak… I am actually the “backseat driver from hell” & I honestly can not control myself. Amy has been there for me through so much – the good times & the bad times… she was there for me when my mom was dying & she sang at her memorial service… I can talk to her about anything & she is always there to listen. For the longest time, I honestly could not even talk about her moving away without bursting into tears… crazy, I know, but I was more upset about that than my health issues. I realize that she is still my friend & we talk all the time… but, I miss her. Lesson learned from this for me is to cultivate your friendships because those who are “true friends”, are hard to come by it is like finding a rare gem and “true friends” are essential to your emotional well being. You must be very careful because there are those “friends” who can effect your health in a negative way too and usually they are “a dime a dozen” but that is a whole other blog post for another day. I am very fortunate to have several “true friends”.

As I have made it through the initial steps of this change, Blake & I realize how fortunate we are to have been led down this path. Dr. B is absolutely brilliant & he truly cares about his patients. We like him for so many reasons but we really like that he is straight forward & does not “sugar coat” anything. For the first time in a long time, I feel like I have a fighting chance. Because it takes more than a great doctor, you must have an entire cohesive “team” from schedulers, assistants, nurses, lab techs, office personnel etc. who know the importance of what they are doing and who truly care about what they are doing & believe me, that is not easy to find but somehow Dr. Anderson  has mastered that! I am so glad that I am able to come home…God laid this plan out for me & everything is going to be fine. And I am finding my “Joy” again in each day that welcomes me.

As the joy of the Lord gives you strength, you’ll be able to face any problems you have to deal with, and you’ll enjoy your life while you’re doing it – Joyce Meyer

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Now, this is another “true friend”… My sweet “Sawyer” always by my side…

 

 

Lean on me…

Cameron, Heather, & daughter Lily today

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/

 

HIS Time…

This is a story of Fred who was so close to death as his heart was failing rapidly and how everything miraculously fell into place…through faith and redemption, and a beautiful angel named Callie. This is Fred’s story of hope in his words…S

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 21st 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.

Making Memories While Searching For Hope In The Dark…

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…

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

Ricki’s miraculous journey of hope…

This is a story of a beautiful young mother who has beaten the odds time and time again. Even after being told that there was no hope, she held on to faith that she is here for a reason and she refused to give up. If you didn’t believe in miracles before, this story might just change your mind…S Ricki before & After Liver transplant #2

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

The Gift Of A New Kidney On A “White Christmas”…Well, Maybe This Year…

This is a story of numerous medical trials of a lady from Texas who has had ups and downs throughout this frustrating process but as you will see, she is a trooper and is still holding on to hope. Please take time to read her story in her words…S

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

Third Time’s A Charm…

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

 

Are you my type?…

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

Wiser than her years – Natalie’s Hope…

This story is from Natalie, a 14 year old girl who suffers from a life-threatening liver disease. Natalie contacted me a few months ago and explained all that she endures on a daily basis as a result of her failing liver and told me that she had recently started a foundation and wanted to know if I would help share her information so she can get the word out. Now, let me make this perfectly clear, she was NOT looking for pity…she was on a mission and I immediately realized that this girl is definitely wiser than her years and she is taking the bull by the horns and utilizing her dreadful situation to make a difference! When I first read her message, my heart literally dropped to the pit of my stomach. I didn’t quite know how to respond to a fourteen year old child who has her entire life ahead of her and is battling the affects of this brutal disease with everything she has… I felt sadness and at the same time, I was amazed by her spirit. I know how difficult it is for me but I am an adult in my 40’s (and no, I am not one of those who are ashamed their age. Actually I am very proud of it… I LOVE each & every birthday… it just takes me a few minutes to do the math but I am somewhere between 45 -47)… I honestly can’t imagine being 14, dealing with this. But, despite suffering the cruel effects of this disease, Natalie is making a difference by educating others and raising money for research for Biliary Atresia…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

Milestones and Memories…

To get through the toughest journey we need only to take one step at the time but we MUST keep on stepping…I saw this today & stopped for a moment to reflect on how much this describes my life today. As my health continues to decline, it is much more difficult to mask the symptoms from my family and close friends which is not really necessary because I know that they all love me sick or not but I also realize that being around someone who is sick all the time can be a bummer to say the least so I will keep making the effort…ever heard the saying “fake it till you make it”? Well, I’m trying that out for a while!
That being said, I also feel like the luckiest woman alive! Yep, I said it, I am literally the luckiest woman alive! Forget the material things… those things that in the end, just don’t matter one bit…forget the fact that sometimes it seems like there is no way we will ever get through all of this and there is no light at the end… forget that things are literally falling apart around us, the what seems like daily, major breakdown of home appliances or automobile trouble, the mounting debt, the fact that my health continues to decline & the embarrassment of losing my train of thought and attempts to mask confusion when we do get out and I am talking to someone who does not fully comprehend what is going on with my disease process. This has all been going on for so very long now…it has almost become amusing to me because I know that my faith is being tested and the test seems to be getting more complicated by the day! I refuse to let this test of my faith destroy what is so very precious to me…the things that really DO matter… my family, my friends, my faith in God… so bring it on …I will not waiver… I LOVE my Lord & Savior and that is the bottom line! He is the reason that I am here today & in all reality, things could always be so much worse (and Blake, my wonderful husband, if you are reading this, I know what you are thinking, but yes honey, it really could always be worse) psst…he sometimes gets a bit frustrated with my “glass half full” attitude but I make no apologies because it is true!

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!!

 

 

 

 

The Unexpected Path …

Bob was just clicking along living his life with no idea the path that he would soon be traveling …leading him through multiple “heart attacks”, cardiac procedures,  fears that lack of financial resources would prevent him from a second chance at life, being told that is chances of living more than two weeks without the use of a LVAD (“Left Ventricular Assist Device” – the LVAD doesn’t replace the heart. It just helps it do its job and can mean the difference between life and death for a person whose heart is too weak to effectively pump on its own who & is waiting for a heart transplant). When it felt like there was simply no reason to hope… he held on with the support of his wife & most importantly, his faith in God…S

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’s Gifts…

This story was submitted by a friend of mine, Alex who lost his beautiful daughter Loren tragically in January 2011. It is a Donor Family’s perspective of the other side of organ donation. Alex has taken the untimely death and unbearable loss of his beautiful daughter Loren and makes every effort to express to others the importance of being an organ donor and his tireless efforts to raise awareness in honor of Loren are remarkable. Before that fateful day, Loren signed up to be an organ donor. That 60 second decision to donate her organs saved and changed the lives of 76 people… S

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.

 

 

 

 

 

 

 

 

 

“God Winks”…

A few months ago, I received a request from Reverend Duckworth to speak at her church, Grace United Methodist in Natchez about “Faces of Hope for Life” for the Lenten season.  Although I was honored by this request, I am not a “public speaker” so I was quite hesitant at first to say the least. In addition to not being blessed with the gift of public speaking, the commute to Natchez is a couple of hours which I am currently unable to do and my “in-house chauffer, hubby – Blake”  would be working off-shore on the date, also, I am normally settled in by 5pm (My energy level is much better in the morning). Don’t get me wrong, I am so passionate about raising awareness for the need for organ donors and I will do anything that I can to help raise awareness but I just couldn’t see a way that I would be able to do this. Well, my dear friend & neighbor, Karma wasn’t having any part of me declining this invitation and although she has a very high paced, important job, she insisted on taking the afternoon and driving me and she wasn’t taking “no” for an answer so I accepted the invitation.

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

 

 

 

 

 

 

“Honesty” Scott’s Liver Transplant Journey…

 

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 tearsTonight 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 31st, 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 49th 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!

“Smiling for Riley” The O’Brien Family’s Journey of Hope…

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 20th, Riley had his 20th Cardiac Catheterization…and as this story is being published, Riley is preparing for his 21st… 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 4th, 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

“Finding Joy – the story behind Faces of Hope for Life”…

I was recently interviewed by one of my spiritual mentors, Steve Casteel for “The United Methodist Hour – Time that Makes the Difference” for a two-part series on finding Joy and to help promote organ donation awareness. Actually, the story behind my blog started with this television ministry because when I heard Steve’s message on the importance of utilizing your passions to make a difference and how important it is to be “on fire” for God and not to go through life being “luke warm, it really hit home for me because since becoming ill, I had become “luke warm” to say the least. For the first time in my life, I am unable to work, all of the things that I previously volunteered for and was more physically & financially involved in, I simply cannot do…and at times, I honestly feel  like I am useless… and I am definitely too ill & too weak to really be “involved”.  Well, after Steve’s message was delivered to me, I prayed about how I could do something to make a difference… long story short… this blog was born from Steve’s message. You see, Steve was the pastor at my church for many years & Blake & I always loved to hear him preach. He speaks from the heart & “shoots from the hip” and sometimes his message will hit very close to home and have you squirming in your seat because you may find yourself looking inward & realizing that things need to change. Well, I am so glad that this message hit close to home for me because not only did I find a way to utilize one of my passions to hopefully make a difference during a time when I believed that there was nothing that I could possibly do to make a difference, this blog has been a vessel to “emotional healing” for me because I have met so many wonderful people and in the process of sharing their stories, I am able to see that there is definitely a reason to hold on to hope for that second chance for life!!

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

“With Every Heartbeat” – Kelli’s story…

This is a story about a beautiful and vibrant young mother of four who after being misdiagnosed with gallbladder disease when in fact she was in heart failure and in desperate need of a transplant. Against the odds, she received her second chance from her donor angel, Alicia a beautiful, intelligent young lady who made the conscious decision to become an organ donor because she knew it would help others. Alicia’s heart now beats in Kelli’s chest and Kelli’s children still have their mother… S

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

 

Thanksgiving 2011 – “Clarity & Time”…

As I sit here in my “happy place” thinking about this Thanksgiving, I can name so many things that I am thankful for this Thanksgiving, most of which I am thankful for each & every day and I can name them all almost in a rhyming fashion on each & every Thanksgiving day… my family, my healthy child, my friends, my church, food, shelter, my animals, ….etc…etc …yes, I know it sounds so trivial but the bottom line is, it is so true!

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!!