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Liver transplant - Let's support each other

Transplants | Last Active: 4 days ago | Replies (1606)
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@goatgirl

This is my first time posting, I wasn’t ready for many reasons to talk about my transplant. I received a liver during the pandemic, in August of 2020. It was an emergency surgery that I was flown to Mayo and received because what they thought could turn around, didn’t. I was very healthy very active, rarely ever sick and one day they thought I had lime disease the next thing I know I was moved to the top of the list and given 24 hrs to get a liver! They still don’t know what caused mine to fail and may never know. Anyone else have this happen? I go through stages of anger for feeling guilty for feeling bad for myself to rejoicing that I’m here for my family! Question, it will be 2 years in August for me, when do blood draws slow to less than once a month? Tac and cellcept goes down or away? I had CMV and rejection, but in my head it never goes away…thoughts on alcohol?? Mine didn’t fail from it and really miss my margaritas,,, then the guilt comes in for even thinking I wanted to feel normal again and enjoy happy hour!! Ugh…anyone else feel like the boy in the bubble some days?? Thought…be nice…still sensitive to criticism…. Thanks….

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Rosemary, Volunteer Mentor | @rosemarya | Jun 7, 2022

@goatgirl - I had the same thing happen to my kidneys while I was waiting for a liver transplant. They failed suddenly and the diagnosis was hepatorenal failure. I spent 5 days in ICU before I was stable enough to be accepted and flown to Mayo Rochester for possible cholangiocarcinoma diagnosis. I needed dialysis until I transplanted a liver and a kidney in April 2009.
Your blood draws will gradually be spaced farther apart. I have my labs every 3 months, and my immunosuppressant meds are at a lower level than they were earlier. Your doctors will be closely following your labs and your Tacrolimus level. The goal is to have a level that is high enough to protect your new liver from trejection, but not high enough to be toxic. It is a delicate balance. I also take cellcept, and it is measured with labs diring my annual evaluation. Immunosuppressant (antirejection) meds are to be taken for life.

I understand your anger, and your feeling guilty with anger, and your rejoicing. Believe me when I say that anything is possible as a reaction. It is possible that some of the feeling are magnified by medications. It is okay to mention this to your transplant team for their opinion.
Alcohol is a 'No' for liver transploant recipients. I have adjusted, although I do miss a cold beer with pizza! And I am the gal who has iced tea at a wine pairing dinner.

I'm happy that you have joined Connect. I hope that my brief message brings some comfort. What are some of the normal things that you used to do ?

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