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.

maw90455 | @maw90455 | Feb 1, 2023
In reply to @rosemarya "@maw90455, Unfortunately many people assume that alcohol is the only cause for liver disease. I also..." + (show)
@rosemarya

@maw90455,
Unfortunately many people assume that alcohol is the only cause for liver disease. I also was diagnosed with a liver disease not related to alcohol. Mine was due to my family history of autoimmune conditions. I had no symptoms, except that my Primary Care Physician (PCP) noticed unusual blood lab results and referral to specialist and a range of tests and scans as you are currently experiencing.
I was frightened and confused during the testing while waiting for a diagnosis. It is not easy to wait and wonder.

I want to share some information about NAFLD, NASH, and Cirrhosis from the Mayo Clinic Health Information section for Diseases and Symptoms. You will read that Nonalcoholic fatty liver disease (NAFLD) includes a range of liver conditions that are not related to alcohol consumption. -Nonalcoholic steatohepatitis (NASH) is an aggressive form of fatty liver disease with the risk of developing into scarring (cirrhosis). It is one of the most common forms of liver in the US. Here is a link to the information.
-Nonalcoholic fatty liver disease
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/
I hope this will give you a starting point for gathering information about why the doctors are monitoring your health so carefully.

Here is a support group. If you make post there it will be reanimated and members will see it and able to join you in conversation.
Diagnosed with NASH. Listed for liver transplant
https://connect.mayoclinic.org/discussion/hello-all-my-name-is-howard-and-i-have-been-diagnosed-with/
I look forward to joining you there.

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I am Cirrhosis stage 4

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maw90455 | @maw90455 | Feb 2, 2023
In reply to @silvergirl36 "Can you tell us your story after receiving your transplant? What were some of the things..." + (show)
@silvergirl36

Can you tell us your story after receiving your transplant?
What were some of the things you experienced and how did you deal with them?

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I have not had a transplant

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1 reply
myfablife | @myfablife | Feb 2, 2023

Hi,
From what my TP team told me to get on the TP list u have to meet the criteria of how serious your liver disease is . That’s why they monitor your labs and keep track of your meld scores so closely. If they start seeing changes they will change your labs to every 30 days and so on. R u having any symptoms of liver disease besides the tiredness. I had my LTP 2020.
Good health to u to..💚

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1 reply
myfablife | @myfablife | Feb 2, 2023
In reply to @maw90455 "I have not had a transplant" + (show)
@maw90455

I have not had a transplant

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Are they looking to get u on the TP list!
Do u have scarring from your cirrhosis and have they given u a meld score.

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2 replies
maw90455 | @maw90455 | Feb 2, 2023
In reply to @myfablife "Are they looking to get u on the TP list! Do u have scarring from your..." + (show)
@myfablife

Are they looking to get u on the TP list!
Do u have scarring from your cirrhosis and have they given u a meld score.

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Extensive scarring-cirrhosis stage 4-meld score 14

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1 reply
myfablife | @myfablife | Feb 2, 2023

Hi maw, With my TP center u have to have a meld score of 17 or higher w/other symptoms to be considered for TP. Every TP center has certain criteria. I-had a high meld score, ascites, portal hypertension and hepatic encephalopathy “which was horrible” hospitalized for a while from that. I too was dx. with NASH with cirrhosis. That is why they monitor your labs so closely for any changes. I was put on several meds to help with my symptoms that I had.
I hope u stay well and let us know how u do. It’s a lot to deal with.

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1 reply
crystalfaye | @crystalfaye | Feb 3, 2023

Liver transplant in June of 2022.
It has not been a smooth journey but I am confident it will all work out.

My question is to those who have had a transplant, do you have occasional issues with running a low grade fever a extreme tiredness? It takes me a couple of days to recover from these episodes.

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parrot53 | @parrot53 | Feb 3, 2023
In reply to @maw90455 "Extensive scarring-cirrhosis stage 4-meld score 14" + (show)
@maw90455

Extensive scarring-cirrhosis stage 4-meld score 14

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Hang in there. Your team will monitor you for any further problems. How are you feeling? Sometimes it is hard to wait and see but keep your friends and family close and enjoy each day. I know being in this situation is difficult but it made me reevaluate my priorities and I am so thankful for that. Wishing you the best of luck on your journey.

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maw90455 | @maw90455 | Feb 3, 2023
In reply to @myfablife "Hi maw, With my TP center u have to have a meld score of 17 or..." + (show)
@myfablife

Hi maw, With my TP center u have to have a meld score of 17 or higher w/other symptoms to be considered for TP. Every TP center has certain criteria. I-had a high meld score, ascites, portal hypertension and hepatic encephalopathy “which was horrible” hospitalized for a while from that. I too was dx. with NASH with cirrhosis. That is why they monitor your labs so closely for any changes. I was put on several meds to help with my symptoms that I had.
I hope u stay well and let us know how u do. It’s a lot to deal with.

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THANK YOU AND I HOPE YOU STAY SAFE AND HEALTHY!

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