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!
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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 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
@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 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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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.
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!
@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.
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, 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?
@racing212, My transplant evaluation for listing was 10 years ago, so I am depending on your expertise about the evaluation process. Okay?
@gaylea1
@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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