Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@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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@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

@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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Congratulations on ur anniversary

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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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@tgshomes

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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Im on the waiting list for over a year now. I see the Dr. At mayo in Rochester mn in march and get ct scan in December…

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@tgshomes

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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@tgshomes, Welcome! I am happy that your dad has you to support him during the transplant process. From my experience, the process can be frightening and even lonely. So learning all about it, will benefit your dad, mom, and you. I like to think of Mayo Connect discussions as a way to learn from the patients who have experienced the transplant journey themselves. Be assured that we are available day to day and 24/7. I invite invite your questions any time you think of one.

Other members have shared about their own Brain fog battle, and Hepatic encephalopathy. I want to tag the following members to this conversation. @racing212, @gaylea1, @contentandwell. @livertrex, @wildcat

Is your dad scheduled for his transplant evaluation? What questions do you have?
Is he looking for a living liver donor?

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@racing212

Im on the waiting list for over a year now. I see the Dr. At mayo in Rochester mn in march and get ct scan in December…

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@racing212, My transplant evaluation for listing was 10 years ago, so I am depending on your expertise about the evaluation process. Okay?

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