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!

@jdlogan65

Congrats Mr Parker! I have had my liver for just over two years. The transplant team in Phoenix saved my life. I was fortunate enough to get a transplant on the day I was listed! I am so grateful to the people who made my life whole again. Mayo was recommended by someone I talked with at UNOS or I would not be writing this now. I was diagnosed with HCC which was treated with radiation prior to the transplant. This has been a difficult journey for me and my caregivers. Everyday is a gift now. You find out who really loves you because this is not easy. Scans every 90 days, weekly labs, pills, pills, pills. Everolimus, no Tacrolimus. Oh geez your kidneys are getting hammered by the drugs. It can be a roller coaster! My wife of 14 years said “I didn’t sign up for this”. We are splitting up.
Now we get to deal with this SARS-CoV2 pandemic? I have been vigilant even prior to COVID-19 by self quarantine in my vehicle until my appointments. LabCorp and my local doctors are using the same criteria for face to face procedures or telemedicine. I was worried about catching the virus since we have suppressed immune systems. I am not as afraid of contracting the virus as I was because immune suppression could be a positive thing. I have read mixed reviews on this one. The people who fair well seem to have a controlled immune response. Someone help me out here. I am taking every precaution but many misinformed people who are spreading this don’t seem to care. It’s almost inevitable that eventually we will contract this virus unless a vaccine or treatment is found.

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@jdlogan65 that’s amazing that you got a transplant so quickly. Your MELD must have gotten high before you were listed. Were you feeling reasonably well? I see that you were having radiation treatments, I don’t know much about HCC, I had non-alcoholic cirrhosis.

I too have read that people with very active immune systems can be at a disadvantage. It seems as if they are still grasping at straws trying to figure everything out.

It does seem as if many of us will eventually get COVID unless they come out with a good vaccine relatively soon. This is particularly true for those who have to go out. I had not been out of my house except to take walks for 3.5 months but I did venture out today to do 3 quick errands. I was very glad to see everyone wearing masks, and the places I had to go to had excellent controls in place. I live in NH and NH is one of four states seeing a decline in cases. I guess what is being done is working.
JK

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@athoub

thank you for guiding me to this awesome group … soon I will share with you all my story and I hope to be an active member

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@athoub, I want to check in and let you know that I'm thinking about you. You are welcome to drop in anytime, you don't have to wait until you get a story together. In fact, you can simply read the conversation and see if there is something that you might find interesting to you. You might even want to post a response or a question about living with a liver transplant.
Hugs.

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Hi all. I go to róchester Sept 21 and 22 for a follow up on my liver.

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@racing212

Hi all. I go to róchester Sept 21 and 22 for a follow up on my liver.

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@racing212, Hi, I hope that you are doing ok. I am glad to hear from you, and that you are going to be able to keep up to date with your care. So important!
September does give you some time to prepare for your visit. I know that you have a well established pattern of travel and lodging already, but if you want some resources or to connect with others about travel to Rochester as your visit gets closer, let me know.

Do you have a schedule of appointments yet? Is there anything new that has been added to your routine testing?

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