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.
First, I need the rapid decline to slow down or stop to give me enough time to get on the radar screen at the Lahey Clinic in Boston to be assessed for a transplant. If I am a good enough candidate, they will begin monitoring me closely and place me on the national list with approximately 17,000 others awaiting a liver in the United States.
Second, if the Lord grants me the time, we begin looking at the transplant process. I cried many tears on Thursday. My pain mostly came because I was so humbled by the love my family and closest friends started heaping on me. My sisters debated which of them was the best candidate to donate part of their liver. My children searched the internet to see if they could donate. My nieces and nephews called and texted and our best friends were ready to hop a plane to join us in the hospital that night. My oldest sister rushed in ready to give me part of her liver that afternoon if they would do it. All I could do was cry with my wife while seeing and picturing all the grief I was causing the people who love me. I started a letter to my Shara begging her to celebrate her wedding even if I wasn’t there but I couldn’t finish it … I think this might be less painful if I was alone.
I look at the transplant costs ranging from $300,000 to half a million dollars. That money could feed thousands of children, dig numerous safe wells or advance the love of Jesus in numerous communities. Truthfully, though I know the people who love me will disagree, I doubt I am worth the effort or the money. I think there are better investments. I am ready to die … I’m not ready to cause my loved ones so much pain. If I could spend $300,000 to spare their pain, I would. So, I will, if the Lord grants me the time, get on the list.
Third, hope. On Friday morning I spoke with another doctor who told me that while my liver condition requires me to take steps to get a transplant, he sees that I may not need a transplant for a year, 3 years or more. Guess which doctor I am deciding to believe? Yes, Friday’s doctor! I will see my liver doctor this week if he can spare some time to evaluate my life and am hoping he is of the same mind as Friday’s doctor.
Back in that Florida Hospital bed in the middle of the night when I awoke with two strong impressions that I don’t know if they were in a dream state or audible, I sensed a God thing. Did I see God? Thankfully, no. Was my room filled with light? Still no. Did I feel a weird warmth? No. I’m sorry. There was nothing Hollywood about it. It was just a very, very strong impression that woke me up…I know … weird stuff … the stuff of which fruitcakes are made. We’ve got TV people telling us God talks to them, preachers who say they shave with Jesus and kooks telling us the world is ending on this date or that.
I talk to God a lot. He doesn’t talk to me. I hear from Him through my bible and the encouragement of friends. I see Him in nature and beauty. I see His heart in people adopting children out of horrific conditions. But, He doesn’t talk to me. If He was always just showing up blabbing on and on about this and that, I imagine it wouldn’t take long for it to be commonplace and I’d start looking at it as … well … “blabbing.”
There was something entirely unique about that hospital scene. It is etched in my memory. One of the things He said was, “I want you to write honestly about this.” That’s my commitment through this journey. When I am discouraged, I’ll write it. Upbeat? Positive? I’ll write. Scared? I’ll write it. Strong, weak, neat, messy, angry, happy, nervous, tired. “Write honestly.”
People tell me to be strong. Is that something you can just flip a switch and do? If it is, someone please show me the switch.
I’ve heard, “Don’t be afraid.” When or if I get a transplant, they will cut me open from the left to right, remove my shriveled organ, put a new one in with several shunts draining from my body, have me on a machine that breathes for me and put a tube up my … yeah, you know … into my bladder.” I’m not supposed to be afraid of that? Well, I am. If that means I’m weak in my faith, it is what it is. My bible tells me about a lot of people who were afraid. If people weren’t afraid, God wouldn’t have said, “Do not be afraid” so often. I’m afraid. But, I do hear my God whispering, “Shhh, do not be afraid.” He does it with the compassion and love of a parent rocking a child back to sleep after a nightmare. He’ll hold me and tell me over and over again until I drift off into His peace. Right now, like that child in His lap, I’m still scared of my nightmare. He is so very patient.
5-9-11 – Weeping big tears…Tonight I cried. I cried hard. I talked to God and asked Him all the things you might expect: why me, why now?
I recited the 23rd Psalm hoping for comfort. Instead I kept choking on the “valley of the shadow of death” part. I shall fear no evil? No, I’m not there yet. I am terrified by parts of this transplant story.
Even though it was close to 1 AM and I was hiding downstairs on the couch so as not to awaken Robin with my infant-like bawling, my daughter came into the kitchen for a drink and spotted me. I suppose the box of tissues and the tear-soaked tissue balls on the floor tipped her off. She sat down by my side and leaned her head on my shoulder and my waterworks started anew.
I talked. I sobbed. She cried. She said, “I love you, dad” and we wept together. Wow, what a strong man huh? Crying in the arms of his daughter. Sheesh. I apologized for being such a mess and we laughed. We talked about her upcoming wedding and I gave her a blessing like the Hebrew men of old gave their children. It was a sweet, sweet time for me. She went back upstairs to study for finals and I found myself praising God for bringing her down for a drink. God is good.
I will be able to say “I fear no evil” at some point in the days to come. I know it. But tonight I am so thankful for my Lord who holds me and listens to my heart. I know He has plenty of time for me to stretch and grow and discover yet another level of His extravagant, life-giving grace. Now at 2 AM I am ready to sleep. Soundly. Peacefully. Safe in His arms.
Lord, thank you for tonight. I feel like George Bailey in “It’s a Wonderful Life.” People all over the place have joined the battle in prayer.
~ “Dear George, remember no man is a failure who has friends.” ~ Clarence Oddbody
I am blessed. I have lived blessed. No matter what the future holds for me, God has blessed me with a wonderful life
I wish I had answers. Tomorrow I will be speaking with Lahey Clinic to schedule our transplant journey beginning. Today my liver doctor called to encourage me and tell me he is ordering labs to watch out for my kidney function because of the diuretic I am on to drain fluid from my belly. On Wednesday my general doctor is managing to squeeze me in to see his nurse practitioner because he is far too busy to see me. (Yes, you can sense that I am angry about that!) But, I know nurse practitioner Kait and am comfortable with her. She will check my pneumonia and I will demand an x-ray to see that my lungs are clearing. Last time they told me I was clear and did not order another course of antibiotics. I’m not accepting that this time. I think I’ve developed a little bit of an aggressive attitude today.
5-15-11 – This liver transplant thing sure is making me see things differently! Someone said, “I can’t believe you’re dying.” I looked at them and remembered one of my favorites, Matt Chandler, and how he responded to that. I said, “So are you, I just might have a little better grasp on the timing.” Wow. Chandler is right. The death rate is 1/1, or 100 percent. I really am sensing that the Lord is giving me time to get a transplant … or even heal me. But, eventually you and I will die. My challenges are opening my eyes to look back at my legacy. Have I contributed? Impacted people? Invested in more than stuff? Have you? I want to invest in the stuff that matters.
5-19-11 – When everything flashes before your eyes… Believe me. When that doctor came into my hospital room May 5 and told me my liver was worthless and that I didn’t have much time left, my thoughts immediately went to my family. I didn’t think of my house, my career or any of the stuff that clutters my world. They say your life flashes before your eyes. It does.
First, I thought of my wife. She’s been my best friend since 1982. I can still see her coming down the aisle on that rainy June 2, 1984 afternoon. I can see her looking into my eyes and pausing in a moment of panic when she forgot her vows. I remember our kiss and the way my heart felt like it was going to explode as we walked past our friends and family as husband and wife. What would she do? How would she live? My life insurance was the first casualty of this liver disease. She wouldn’t even have enough to bury me.
Next, I thought of my daughter’s upcoming wedding July 2. Would it now be a day of mourning instead of the celebration we’ve been planning? I thought of her standing in her snow suit on top of a snow bank at 5 yelling, “I love daddy!” at the top of her lungs and listening for the echo off the nearby courthouse. I remember her refusing to take a break while learning to ride her bike and through determined tears saying, “No! I WILL do this!” I thought of the cold bleachers and the hours and hours cheering for her as she played field hockey. What would she do?
Next into my mind came my Jacob. “I got the rug burn,” he would tell everyone when he was about 3 and had a scab on his nose. He rubbed his nose raw on the carpet while we were on vacation. I saw him dancing on second base with his helmet on crooked while he used his knuckles to knock on his athletic cup keeping a beat. I thought of him making us laugh and laugh like third-borns usually do. I thought, “He can’t let this take him off course. He will finish culinary school, won’t he?”
And then, my Josh, my first born. I remembered him learning to walk at the back of a camp chapel while I encouraged the people there to give Jesus a chance. I remember playing “Hook” pinball and us yelling “Bang-a-rang!!!” when we’d go to the game room at Attitash when his little brother and sister went to bed. Buckets and buckets of baseballs, his first home run and driving hours watching him play the game we love. The concerts, the road trips and the pride seeing him graduate with honors from Bates College. I saw them all like a movie. “Lord, I want to see him graduate with his PhD.” Parents, sisters, relatives, friends … how would my death affect them? I couldn’t even think without weeping.
Dads, can you picture it? None of us want to cause so much pain to the people we love but we’re always putting our health off until “later.” I beg you to understand that investing another hour at work instead of going to the gym to shed those extra pounds will not matter one bit if you find “doctor death” (as I like to call her now) giving you news that will take your breath away like a lineman driving his helmet into your ribs. We have to take care of ourselves for the people we love. Go get the physical. Try a salad. Go for a walk, ride a bike, play tennis, move … please stop putting it off. The people you love are the only thing that matters. To live is Christ. To die is gain. Paul said it. Mentally, I know what he meant. Emotionally, I am not yet at the point of embracing it. There are far too many people that I love deeply. I’m praying for hope. I’m praying that I will go through whatever is ahead determined to glorify God and share His love. My MELD number is currently 17. (15 gets you on the list) But MELD numbers can change quickly. We’re praying that as my pneumonia clears, my MELD will drop too.
God is good regardless of the outcome of my journey.
1 Peter 5:7 Cast all your anxiety on him because he cares for you.
6-12-11 - My life is too short to:
1) Play church when faith is so real.
2) Miss a moment with the people I love.
3) Convince myself that I am too busy to exercise.
4) Drive past a sunset or fail to smell the flowers.
5) Hold onto a grudge that eats away at me.
6) Let needs of others go past without helping if I can.
Sure, there’s stress. There’s thousands of dollars of medical bills piling up. There’s our house that no one wants to buy. There’s the unknown of tomorrow. But today? Today, I’m going to live. I’m going to love. I’m going to trust my God.
If you are on the transplant journey, awaiting a liver, a heart, a kidney, a lung, I understand what you are living with. We’ve read statistics telling us that 20-30% of people awaiting transplants die waiting. We watch the numbers on blood tests and we now use terms we never knew before. We tell our story over and over. It can be exhausting and discouraging. Instead, choose to LIVE! Make the most of every moment.
I’m going to dance with my precious daughter at her wedding on July 2. I’m going to hold her tight and treasure every second. And yes, we’ll be dancing to a country song too! Unfortunately, she won’t let me wear cowboy boots. (Heartland, “I Loved Her First.” )
9-15-11 – I hesitate to publish this one but I was reminded that I started writing honestly in the blog and vowed to continue. It’s me. Right now. I wrote it responding to an email from a past student this morning and share it with you. I’m not sure what good it will bring and I fear it’s discouraging, but it’s me, right this moment.
How am I feeling? One word – bruised. I just feel beat up and defeated right now. My Jesus is so close but my body is failing so badly. Right now I am losing the physical battle. That sucks. As a man, I want to provide for my family. I can’t. As I husband, I want to be strength for my wife. I am weakness. I want to be consistent for my kids but I am total confusion. For others, I want to serve and love, but I lie here being served and loved. I am so very blessed by so many friends who used to be my youth group kids. The church of Jesus keeps pouring love on me. It’s an amazing thing. It’s humbling and difficult but still so very, very good. So there you have it. That’s me right now. I’m in a battle I am too weak to win on my own. Thankfully I am far from alone. As I lie here posting this, my sister Gloria is happily waiting on me hand and foot. She’s cleaning the house, giving me pills, making me tea, disinfecting and giving her time, yet again, to care for her baby brother. Maybe she’s trying to make up for dropping me on my head when I was a baby. Or, was that Gail? Either way, both my sisters are amazing.
9-20-11 - I’ve never been this low before. I’ve never begged God just to take me before. Now I have. My decline has been steady since March. I’ve read a billion encouraging notes and words. Now I just try to smile and say, “thank you.” I have people praying for me around the world. I’ve cried more tears than I thought possible. I’ve been unable to speak. I’ve wept in front of strangers and friends. I’ve wept with my wife and family. I’ve watched my mom and dad’s hearts breaking. I’m weeping now. I’ve tried to be strong but I am so very weak. I’ve reached the point that I don’t have hope that I will recover but I do have Hope in my Jesus. I am looking forward to being with Him, pain-free, with my new body. I have been healed by His stripes and my future is secure. I am so tired I can’t even think about a transplant. I am watching people I love suffer with me and I hate it. I would do anything I could to take their pain. Jesus loves me even more than I love them. For the first time I think I understand why He takes our suffering on Himself. Unspeakable love…Some of you will be angry reading this. I know. I’m sorry. Honesty.
9-24-1 – 1 I hate my couch…I have a nice, comfy couch. We used to have a good relationship. I was anxious to see it, pull up a pillow and snuggle in to watch my Red Sox crushing opponents. But things have changed between my green couch and I. We spend far too much time together. I no longer look forward to seeing it and I am sure, by the muscle aches and tender spots it now pushes on, that my couch dreads seeing me coming. But, we’re both stuck here. Things have changed. Everything has changed. Now, this morning, I will soon go from lying here in bed to the dreaded green couch where I will spend most of my day eating pills. If I endure, there’s a long, hard road of a liver transplant ahead. I Googled “ascites” and “liver” yesterday to read that there is a 30-40% 5-year survival rate after ascites fluid appears. That means 3 or 4 people who develop ascites are still around 5 years later. Google is more evil than the Yankees. In 5 years I would be just 53. I might have a grandchild or two. I might get to celebrate another wedding or two with my sons beginning new lives. A lot can change in 5 years. Heck, in five years that wretched green couch will be in the recycling stream somewhere. I think I’d like to see it dragged away. New liver, new energy, new couch and a return to independence? I certainly hope that’s what my future holds. Tee-ball games, dance recitals, a vacation with the love of my life not needing to maneuver a chair around corners. Watching my kids get their doctoral degrees, celebrating the opening of my son’s new restaurant by ordering off the menu… I want to be here to join in. Life is such a gift…Sure, I know, heaven will be great. But you know what? Life is pretty great too.
2-26-12 Some things are happening but not too much to report. Some great news, some frustrating news and some struggles … but that’s how liver disease works…
First, my health. I am still struggling to learn my limits. Some days I feel great, almost like I don’t have this terrible disease. For example, last week Monday thru Thursday I felt human, a slow-moving human but human none the less. Thursday I did a few errands and then went to the Apple Store to replace my defective phone. I got there at 11:30 and it was nearly 2:00 when I finally left with my new phone. It was a long day. Then, Friday I was miserable with a fever, nausea and pain. Saturday, I felt somewhat better but laid low doing laundry for the day. Sunday, I am back to the land of the living and Robin and I were able to attend a pancake breakfast fund raiser. Is my activity limit only 3 hours? I’m frustrated. On days of suffering I ask God why He is making me wait. No answers. Silence.
The good news:
First, God has met ALL of our needs. People are so loving and generous. Second, our family has grown! Our little Shara married an awesome guy who fits right in with our crazy bunch. I was so thankful to be alive and able to attend her beautiful wedding celebration. I even had the privilege of officiating and pronouncing she and Jake man and wife. What a great family celebration!!! Third, Chef Donald Jacob finished year one at the Culinary Institute of America. We saw a tremendous growth in his knowledge and skills. YUM!!! He also secured an internship working in Maine’s only 5 star restaurant, the White Barn Inn. It was grueling and just as abusive as those cooking shows on TV but he survived it. We are so proud of him. Fourth, Josh finished year one at Weill-Cornell Medical School in Manhattan. He got honors throughout and was top of his class. He even coached Little League! Amazing. Fifth, Robin’s job at Boyko is a blessing. Her boss blessed us with health insurance for 2012. It’s a very good policy. She has the flexibility to work at home and take me to my doctors appointments. She continues to amaze me by all she does. Now she’s even tutoring children in reading at The Root Cellar, an inner city ministry in Portland.
The coming year will be a year of struggle and victory and growing in our faith. New house, new liver, new beginnings. On January 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
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!