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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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Your MELD score is probably too low to have a transplant unless you have additional medical issues. Most transplant centers only transplant patients with a MELD score of 25 or higher. However, I found that the goal of being listed was beneficial to my health since it motivated me to live more healthy. Among the requirements to be listed are to be sober for more than 6 months and to undergo counseling, receive every vaccine, and undergo numerous tests such as cardiac stress tests and screening for virtual every disease. It took me nearly a year of hard work to be listed, first at USC and then at Mayo Phoenix (thankfully). Within a month of being listed at Mayo Phoenix I had a dual liver/kidney transplant that saved my life. It has been two years since then and I am happier and healthier than I have been in at least two decades. IMHO, it is a no brainer to pursue being listed since it will make you healthier and happier working toward a goal that will save your life. I don't know where you live but the time between listed varies greatly among each state and transplant center. Mayo Phoenix has among the shortest times between being listed and having a transplant.
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5 ReactionsHi grateful
Thank you for sharing every story expands my knowledge and is helpful as a guide. I just sent over my medical records and hope to be on the radar, today celebrates 17 months sober adding to the stability of my foundation. I am happy you are 2 years recovered and doing fantastic, here is to many more years for both of us...
Lisa
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1 ReactionI had some of the same things happen to me. I also had a very serious bleed and the doctors called my family in to say goodbye. I survived. I had an autoimmune liver disease. I was in pretty good shape besides my bleed. I had my transplant 2 years later. Having another bleed is very dangerous. I have been very lucky. In June I will be 38 years post transplant.
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8 ReactionsI was 63 when I had my transplant and went through some of what you did , 40 blood transfusions at least plus acites which was unstoppable towards the end I was given 5 days to live 3 years later I’m here and healthy my meld was in the 30s and stage 4 kidney failure and considered near death, stop all drinking drugs weed everything and get on the list otherwise you won’t be considered, will your life ever be the same probably not it’s a big commitment for a life time, I went through absolute hell and hope I can help others that have to go through this, I’ve never met a person that has a transplant this is a great group
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5 Reactions@runninglykos - Lisa, How are you getting along? Do you know yet whether a transplant is in your future? I have my fingers crossed for you.
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2 Reactions@pgruetz, I'm glad you're still here, and doing well. Wishing you continued good health!
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2 ReactionsHi 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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1 ReactionThank you my44. I hope everything is going well with you.
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2 ReactionsIt’s going good but in December I had a hernia on my surgery incision which was bad and a 8” x 10” mesh is now my whole stomach which still hurts, my scar is paper thin and will never be the same so I can lift max 20 lbs when I was used to lifting 5 times as much, health wise very good blood tests are awesome i volunteered for a Year and a half study for USC students, I only eat organic and never eat at fast food restaurants and drink clean water, I can’t gain any weight or it will mess up my stomach built in weight watchers
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1 Reactionthat is a big bit of mesh! I imagine you will feel tenderness in the scar area for a long time, when I had abdominal surgery the scar was sensitive for over 3 years. I only drink clean water have for years, here in AZ the water is pretty bad to begin with and over the years in my opinion no longer safe to drink. I need a built in weight watchers lol that is definitely an area I need to improve on. I am glad you are doing better, it takes a lot of mental 💪 to overcome so many obstacles. we are all armed with a sling the David's of courage, trust, and unwavering faith...
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