End stage cirrhosis: On the fence with transplant decision-making

Posted by runninglykos @runninglykos, Jan 21 8:36am

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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@runninglykos

Hi Rosemary

I am doing good, last testing came back pretty good, no lesions on the liver, spleen looks good, TIPS paten and blood flow at maximum, no jaundice or cancer, some stenosis and enlargement of liver minor considering, and last kidneys functioning remarkably well as the doctor put it. my MELD is back down from 14 to 12. Mayo told me right now it is a wee bit to soon to be considered for a transplant. Good news and also somewhat frustrating. I will stay the course and as time goes on Mayo told me I can refer myself again for evaluation. Thank you for checking in on me, so appreciate it. I hope all is well with you...

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@runninglykos, This is certainly good news! Lisa, I think that you deserve congratulations for taking good care of yourself so that your liver and kidney are happy I am confident that you will continue to maintain your healthy habits, as well as be alert for any questionable signs. Mayo is a good place, and I have full trust in their judgement, and am confident that if you need to go back to them for evaluation, that they will welcome you and guide you through whatever you will need.
Will you be seeing a local doctor or specialist for any followup or monitoring? Do you have any immediate plans for your future: return to job? begin a new career?

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@jaimedavis93

My name is Jaime and I am 48… I was diagnosed with end stage liver disease in March 2024… Due to alcohol… I started my transplant process at Mayo Clinic in Jacksonville Florida in August 2024… My MELD score is 26 and I have been on the transplant waiting list since Dec 2024… I thought my MELD score would go down after a year of absolutely no alcohol but that’s not the case… I have a sick liver and need the transplant… I hope to get a match soon!!!!!

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Hang in there, Jaime. It will happen, most likely when you least expect it!

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@rosemarya

@runninglykos, This is certainly good news! Lisa, I think that you deserve congratulations for taking good care of yourself so that your liver and kidney are happy I am confident that you will continue to maintain your healthy habits, as well as be alert for any questionable signs. Mayo is a good place, and I have full trust in their judgement, and am confident that if you need to go back to them for evaluation, that they will welcome you and guide you through whatever you will need.
Will you be seeing a local doctor or specialist for any followup or monitoring? Do you have any immediate plans for your future: return to job? begin a new career?

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Rosemary

I see why you are a Mentor! Your words of encouragement and acknowledgment is so calming and helpful. Thank you for the congrats on trying to do my best to stay healthy. I was thinking I am not doing enough and I should have seen a better improvement from 14 to 12 on my MELD. I expect a lot sometimes 🙂 I am still with my liver specialist at Banner University and my Primary care takes care of things that my liver doctor said to me were below her scope 🙂 I get liver scans every 6 months like clockwork, along with labs and anything else they tell me to do. Those pesky complication's come with me, I am disabled and could no longer work in my career field, titanium cage in my neck from a fusion, 2 herniated discs in my back, with stenosis of the spine compressed nerves and other fun stuff. Medications I could take for my spine are no longer allowed because of my liver. So my future plan is to be a survivor, to live the rest of my life clean and sober and enjoy that feeling healthy, and to help anyone I can on this journey or the journey to sobriety.

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