on the fence with decision-making

Posted by runninglykos @runninglykos, 1 day ago

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

Interested in more discussions like this? Go to the Transplants Support Group.

@glover

Hi Lisa,

This is my fourth attempt at responding to your post. I feel for you and your situation, remembering where I was nearly a year and a half ago. So, here are a couple of internet-safe thoughts.

I understand the loyalty to the place that saved your life. (I still look forward to visiting Mayo.) But, your liver's a big deal. Second opinions are normal and can be helpful to you. The more information, the better. If you don't like Mayo, you can always return to Banner.

If you do decide on having a transplant, mindset is everything. You need to be confident in your information, your medical team, your support, and yourself. It can be scary, no doubt. You'll need all of them, and then some, when the time comes. But, if I read it correctly, you're in the 5%, so you'll be just fine. 🙂

Getting on the transplant team's radar is not a bad thing. I went through the evaluation process twice: once in Boston when I lived in NY and again at Mayo-Jacksonville. My answer in Boston was not yet; I was still too healthy. However, that evaluation work supported my Mayo evaluation, which aided in getting listed. So, you may not get listed, but you'll have a baseline if things get worse. And you'll get a better understanding of how your other medical issues might impact/influence the possibility of a transplant.

You're in my prayers.

Dave

Jump to this post

oh my Dave you have me in tears. This was beyond helpful and so informative. You just answered a few questions I had. Part of my indecision is getting a response that would eliminate me on other health complication's. I do need to feel very confident and comfortable with my team if and when it comes to that, that will help me stay in a positive mind set. Thank you from the bottom of my heart for commenting on my post and I can never get enough prayers. My prayers are with you as well.

Lisa

REPLY
Please sign in or register to post a reply.