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End stage cirrhosis: On the fence with transplant decision-making
Good Morning everyone
My name is Lisa and I have end stage cirrhosis. I am having a hard time deciding to move forward and committing to the process of being put on the transplant list.
A bit of back round information on me, I am 55 soon to be 56 I was given the news of my diagnosis end stage cirrhosis in august of 2023. To be clear I really had no idea I was so sick or that my liver was shot, I was not always an alcoholic and in my diluted mind considered 10 years of hard drinking nothing in comparison to 20 or 30 years. I come from alcoholism on both sides of my family.
back to the issues. The night I was rushed to the hospital I was bleeding out, blood was exciting my body with every path it had at it's disposal, by the time I arrived at the hospital I had filled the vomit bag 85% full with blood and no longer had control of my bowels. I was in serious trouble, they rushed me to surgery to put a stint in my liver, by this time I was no longer conscious, but the varices were bleeding so bad in my throat they had to inflate a balloon to try and stop the bleeding first, 8 hours passed and I was still alive but the bleeding had not stopped, it would not be long before I bled to death. The doctor in charge made the decision to leave the balloon in longer than typically permitted. They threw the hail Mary and by the grace of god the bleeding stopped after almost 12 ⏳ they put the stint in my liver but not before They told my family I had less than a 5% chance of making it, well I made it, but not doing good, the doctor said they just did not have the specialists or equipment to help me any further, I was transferred to Banner in a coma and close to death. Banner liver transplant team decided the stint that was put in was not long enough and needed to be fixed. Back to surgery, they extended the stint I started to turn around.
a few weeks later I was sent home. My meld score was 16 in the hospital, of course they could not stress enough to never drink again and that I needed to work on getting clean and being put on the transplant list.
At the time I drank, smoked cigarettes and smoked medical pot. I have been clean and sober for 17 months, my meld score started to go down slowly over a year to 11, unfortunately the last 6 months it is back on the rise up to 14 last time my doctor checked. She has done every test to see what could cause the bilirubin increase. no cancer, no jaundice, no kidney problems, tips is paten and so on.
Finally my question? I have been doing a lot of reading and each case is very individualized and no 2 people react the same to a transplant.
In the end I question if a transplant is worth a few more years? I have other medical conditions and they consider me high risk. Aren't we all high risk at this point? I just don't know...
Thank you Lisa
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Hi, Lisa. I can see how the good news can also be frustrating at the same time. But I am glad that you did get those good test results. It means your body hasn't given up and it's strong enough to keep fighting for you. That will be important if/when you get the transplant. I believe that the fewer issues you have to deal with, the better the desired outcome will be. Stay strong!
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2 ReactionsHi, Lisa (@runninglykos).
I am 16 months post kidney transplant and am doing well. Thank you.
It's so good to hear the positive attitudes from you all! I have a MELD of 12 and had a month long nosebleed last month that got my attention, but quitting a lifetime of drinking and smoking is harder than I thought (maybe impossible). The drinking and smoking started as a way to cover traumas and dramas, and became a norm. The days or weeks I have had not drinking have resulted in my getting depressed, and 4-5 drinks fixes that. Ive tried every antidepressant out there over the years and all make me terribly sick (the hepatoxicity with some of them leaves me to wonder which is worse as a treatment?).
I'm constantly bloated and tired all the time, and I thought about the transplant but do not think I will be able to quit, so I am pretty bummed out about accepting a death sentence for the way Ive lived and am dealing with guilt and regrets and sorrow as I see how badly my children want and need me here. I guess we all know we cant do it for the children, or for any other reason than some kind of miracle.
Any helpful suggestions to motivate or help me accept this grim reality?
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1 ReactionFaith in Jesus saved me and I’m blessed 😇 for that I don’t know how people survive this not being a believer
Those nose bleeds simply suck! I still get them a lot, comes with the territory. When we are in a place mentally and physically that seems impossible to overcome, remember we are all in this together, a good support system, and a tool box to pull from is always a must in the fight to get clean and sober. I never thought I could stop drinking and smoking, 2 pack a day habit on top of 1.75 liters of vodka or tequila sometimes both in a day. Yet here I am 19 months later clean and sober. You can do it, the longer you stay clean the better you will feel, the cirrhosis will no longer be able to feed and in return slow the progression of your disease down. The symptoms from cirrhosis do not disappear but they can be managed. So many of us have been in that place and we are all proof it can be done. mamay don't give up it is never a failure when we keep trying eventually you will succeed.
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1 ReactionGood morning everyone from Canada. I'm a liver transplant Survivor. I had primary biliary cholangitis. I was diagnosed at end stage 3 liver disease and progressed to end stage 4 very rapidly. My journey was very much like yours. I was diagnosed when I was 50. had my surgery when I was 59. I didn't really present with jaundice. I was more dirty Brown like a suntan look. I had numerous extreme esophageal bleeds. I had swelling, ascites and leg and ankle swelling. I remember my first bleed. I was taken by ambulance to hospital and my husband was told to gather family and call your priest. It was that bad. But I survived and I am here today to tell my story. I remember when I got told or sort of asked if I wanted to be put on the list as all possible. Cures there weren't any. I decided yes that I would have a transplant if it was offered. I waited a year and a half for my actual transplant as the world shut down. I had my transplant during covid and it was a very different experience. I can't tell you what to do. I can only tell you what I did and how I felt after I felt so much better. I don't know what your other medical issues and complications are and if they would even be helped by a liver transplant. But know that I will keep you in my prayers and I wish you the very best. Please know that there is a community out here that supports you. Take care and love and blessings from TRANSPLANT family member in Canada
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