Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

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

@gaylea1

@racing212 I also woke up in a different hospital a couple if times. Each had hepatologists but the hospital I ending up going to had the transplant unit/floor. Very disorientating, especially after HE episodes.

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@gaylea1 @racing212 as they say, hindsight is always 20/20. When I had the more serious issue, blood counts precariously low, my husband suggested sending me to MGH and the hospital here was very happy to oblige. I wish we had done the same with the HE episodes. They really did not understand them up here and most of the nurses treated me very poorly, and even the hospitalists were not very knowledgeable. Most of those admissions occurred in the year and a half before I had a diagnosis, but even afterward the treatment was not good.

Gaylea1. I love both meat and fish and never stopped enjoying them, except when I had HE. Then all I wanted was toast.
JK

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@racing212

I've been on the list over a year....

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@racing212 I was on the list 18 months and my MELD was just over 30. It was an intolerable wait and I had every symptom imaginable while waiting. The call did come though and I'm so appreciative of this group of getting me through it. My one year anniversary is at the end of this month.

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That is very true... I had no clue where i was. All i knew was that i was in the hospital and Dr's and nurses and friends were asking me questions

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@racing212

That is very true... I had no clue where i was. All i knew was that i was in the hospital and Dr's and nurses and friends were asking me questions

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@racing212 same. They kept asking did I know what hospital I was in, the month, the date. Answered wrong every time. It's all a blur now.

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@racing212

Congratulations on ur anniversary

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Thank you so much. I remember seeing people on the site talking about they're anniversary's and thinking will this waiting never end for me.

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As a post liver transplant patient the main issues I have questions about are recovery, drug side effects, diet and changes in my body and with relationships. Liver transplant is not what you expected (no matter what you expected). I am not the same person. How do you find yourself again and how do you define yourself now? These are common issues I see reflected in liver transplant support discussions.

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Hello, my dad is beginning the transplant process for a new liver at Mayo in Phoenix. I joined this group in hopes that I could share some of the daily struggles and maybe get some help dealing with the day to day life for my mom and my dad. Were battling mind cloudy-ness currently and it’s a struggle. Thanks everyone!

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@mostlybill

As a post liver transplant patient the main issues I have questions about are recovery, drug side effects, diet and changes in my body and with relationships. Liver transplant is not what you expected (no matter what you expected). I am not the same person. How do you find yourself again and how do you define yourself now? These are common issues I see reflected in liver transplant support discussions.

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@mostlybill, I am a transplant recipient, and I want to Welcome you to Mayo Connect. When I joined Connect, I was Seeking support and answers for the same questions as you have named. I have discovered that all transplants, any organ, share these same concerns.
Mostlybill, I want ask a couple of questions to get this conversation aimed toward your concerns, Feel free to answer only as you feel comfortable to share here - How long ago did you receive your liver transplant? And how are you doing now? What is your number one question/ concern/ comment?
I am looking forward to hearing from you.

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