← Return to Cirrhosis of the Liver: What to expect when waiting for a transplant?

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@katebw

@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.

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Replies to "@hellolance I want to respond as it feels like yesterday I was newly sick and wondering..."

@hellolance, My transplant was 14 years ago and I assure you that you are not being silly for wondering about the future and the "What if's". The uncertainty is a reality for patients like us. I'm happy that you have joined Connect because we understand what you are going thru. I hope that you will meet with your liver specialist soon and find out more about your options.
When I was referred to the liver department for a consult about liver transplant, my husband attended with me as an extra set of ears. I had compiled a list of questions and concerns in a notebook where I (or he) jotted down the answers). Have you thought about making a list of your questions to ask the doctor? I encourage you to begin one.

How can we help as you prepare for your appointment? Do you have any questions for us? When is the appointment?