1. < Transplants

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 | @gaylea1 | Nov 2, 2019
In reply to @racing212 "Congratulations on ur anniversary" + (show)
@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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gaylea1 | @gaylea1 | Nov 2, 2019
In reply to @racing212 "That is very true... I had no clue where i was. All i knew was that..." + (show)
@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 | @racing212 | Nov 2, 2019

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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1 reply
gaylea1 | @gaylea1 | Nov 2, 2019
In reply to @racing212 "I've been on the list over a year...." + (show)
@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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JK | @contentandwell | Nov 2, 2019
In reply to @gaylea1 "@racing212 I also woke up in a different hospital a couple if times. Each had hepatologists..." + (show)
@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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gaylea1 | @gaylea1 | Nov 2, 2019
In reply to @contentandwell "@racing212 Cirrhosis really does affect each of us differently. It sounds as if your HE episodes..." + (show)
@contentandwell

@racing212 Cirrhosis really does affect each of us differently. It sounds as if your HE episodes have been fairly severe, yet your MELD is still rather low. The worst HE episodes I had did not bring me close to passing out, although I do remember being almost catatonic with one. With most, I was just very difficult at the worst, and just confused with milder ones -- with those a long nap cured them.

The more I have learned the more I think that diet is definitely an influence on HE, certain foods do create more ammonia. Those are generally protein foods, I think that red meat is probably the worst of those. I kept my meat/fish at dinner down to 4 oz which was different for me because we had generally had larger portions of meat. I was told to not give up protein though so I did continue to have it. Knowing what I know now I think I would keep a food diary of what I eat so when I had an HE episode I could look back and see what may have brought it on.
I have heard of some people giving up meat-based protein entirely but I would not and could not do that myself. My hepatologist (at that time) did not advocate that and I do not believe they do at Mayo either but I am not sure about Mayo.
JK

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@contentandwell I just couldn't face eating beef, chicken/turkey or fish prior to transplant and I still had severe HE episodes. Regardless of that I still think your advice is very good. I still have trouble eating meat but make up for it with alternative choices plus Boost or Ensure with extra protein.

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gaylea1 | @gaylea1 | Nov 2, 2019
In reply to @rosemarya "@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with..." + (show)
@rosemarya

@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with Mayo, and that gives me confidence that I get the best of care. I hope that that is the way it is with youur docs. I am sorry to hear about your hospitalization. Pre transplant. my hospital and ER visits were quite frequent, and I never got used to them, however I did (unfortunately) become well known to the staff there.
I sincerely hope that you will soon be match for an available organ. It is a matter of time, and speaking from my experience, the waiting can feel intolerable.
I want to emphasize the importance of eating healthy and remaining active prior to transplant. Your body will be better prepared for surgery and recovery will be easier. Are you able to eat and get some exercise?

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@rosemary's such great advice! I was scheduled for PT twice a week at the transplant clinic where they documented everything. The therapists were also transplant clinic nurses and they were very encouraging. I started about 15 months pre-transplant.

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gaylea1 | @gaylea1 | Nov 2, 2019
In reply to @racing212 "I've had episode of waking up 3 to 4 days later in a different hospital. That..." + (show)
@racing212

I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October

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@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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