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Cirrhosis of the Liver: What to expect when waiting for a transplant?
Transplants | Last Active: Aug 16, 2023 | Replies (104)Comment receiving replies
@hellolance, welcome. I moved your questions about liver transplant due to cirrhosis of the liver to this existing discussion in the Transplant support group:
- Cirrhosis of the Liver: Whta to expect when waiting for a transplant? https://connect.mayoclinic.org/discussion/cirrhosis-of-the-liver-2/
I did this so you can connect with other members like @rosemarya @mylifebe4u @jazzmanfla @marinab @darrindaeddins1981 @cs1964 @firecat @arqui02000 @ajdo129 @parrot53 @katebw @sandif @mstorch82 @trantplant2022 @crystalfaye @jackie421blfdgurl and many others who like you have been diagnosed with cirrhosis. Some have had a transplant, others not or not yet.
Lance, I can imagine being concerned about being declined for transplant. It sounds like you're doing all the right things. What questions do you have for the group?
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@hellolance I want to respond as it feels like yesterday I was newly sick and wondering about liver transplant. But this was in 2021, and by years end I had a liver transplant. So it’s been over 1.5 years since surgery. In 2021, before I went in for my transplant, I was hospitalized about 13 times not including 3 ED visits that did not result in inpatient. It all related to my liver failure from cirrhosis which seemed to come on fast and furiously with no clear cause- it’s thought that it’s autoimmune. I am now 55 and I feel very well but when I was sick I couldn’t imagine that I’d ever feel well again much less live to see my daughter graduate college (I did! She did!). I found the process to be intimidating and given how sick I was I couldn’t imagine how all the stars would align in time for me to live. I was at first concerned that my liver team to be worried I had a problem with alcohol because I discovered I was sick when I had an episode of confusion while driving and police accused me of being intoxicated (I wasn’t).
My hospitalizations at first were due to hepatic encephalopathy which let to extreme and unsafe confusion (I called this “the crazies”) or for recurrent fevers and other odd symptoms.
When you have your appointment, it’s perfectly acceptable for you to ask what your treatment options are, including transplant. If you don’t know your MELD score, ask for this to be calculated as it’s an indicator of how sick you are (though for some with something called PSC that’s a complicated issue). Perhaps ask about medications you are taking/should be taking, and what they are for. My favorite way of getting true Dr advice is to ask what they’d recommend for their sibling or spouse or parent?
If you use drugs or alcohol, ask about what their protocol is- lots of transplant centers want 6 months of sobriety especially for people who imbibe a lot. If this relates to you, don’t be shy about asking and sharing as this is your body, your life, and you deserve clarity and very good care. Best of luck and keep reaching out.