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.

@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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there has not yet been any discussion of the TP list at this point, and I hope they never bring that up-I hope you are staying healthy!

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@myfablife

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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For the past several weeks, I have been very tired, bloated, nauseas, and my hands itch ( not sure if any of this is related), and irritable.

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@maw90455
These symptoms are related to liver disease and advancing cirrhosis. Symptoms can come on gradually over time, or suddenly. Since you have felt an increase in symptoms in the last several weeks , I think you should contact your doctor about it. He might need to see you or do some labs to determine if your condition is worsening at a faster pace.
My symptoms and MELD were at a stable level , then suddenly dropped. That is when I was referred to the Transplant Center.
MAW- Does your doctor know about the increasing symptoms?

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I haven’t checked in with him for several weeks!

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@maw90455

I haven’t checked in with him for several weeks!

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I think you should check in today. Remember this is Friday so do it now. It is best to be safe a get his expert opinion. It could be normal for your condition - or - He might want to see you next week.

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@rrichardparker

I am 6 years past my liver transplant

Support groups are very good with support. Just talking to people in the same boat as you leavens the horror of your situation.

Post transplant too.

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WOW that is awesome!!! My son is very sick now and waiting to even get on a list. If you can share anything with me it would be comforting I am sure.

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@maw90455

For the past several weeks, I have been very tired, bloated, nauseas, and my hands itch ( not sure if any of this is related), and irritable.

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It is possible all of those could be, I had horrible itching and of course the other problems I already shared with u.
Keep your Drs. posted on any changes.
Good luck😊💚

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@maw90455

there has not yet been any discussion of the TP list at this point, and I hope they never bring that up-I hope you are staying healthy!

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I hope they don’t either. I am trying my hardest to stay healthy to.

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@scooterbill

WOW that is awesome!!! My son is very sick now and waiting to even get on a list. If you can share anything with me it would be comforting I am sure.

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@scooterbill, I want to extend my personal welcome to the Liver Transplant support group. I am a transplant recipient and I am sorry to hear that your son is very ill. As a parent, I can understand your fears and concerns about him waiting to be eligible for a transplant.
I had my transplant in 2009, when I received a liver and kidney transplant at Mayo Clinic in Rochester. My husband was my caregiver. My pre transplant disease and progressing illness were like a nightmare for both of us, but as I sit here writing this today, I am in good health and ready to assist you and support you on your journey.

Scooterbill, Are you looking for support as a caregiver? Or do you want information about the evaluation process for liver transplant? What questions would you like to ask?

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On January 15, 2023 my husband was given a chance for a new life, he received a liver transplant the the Mayo Phoenix Campus. Overall, he is doing very well. The support and kindness we have been shown can not be measured, at times it is overwhelming. We promise that when we can, we will pay it forward.
Now that he no longer has cirrhosis he is no longer in need of the dreaded lactulose.

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