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.

@banzai

I suggest you have military retirees n veterans section
We have vet care which is not worthy in my opinion but some give vets choice to go civil care
Retirees have tricare n tricare for life
But I’ve waited 6 years for care
The va treatetme for diabetes when it was liver failure
Now it may be too late

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Hi, banzai. I want to extend a welcome to Mayo Connect. I don't know to whom you are directing your post about a veteran's section, Did you mean to inquire about one in your area?
I am glad that you found Connect because Mayo Clinic Connect is an online community so it is available to you anywhere, anytime.
Welcome and thank you for your service to our country.

How are you feeling? Is your diabtes controlled? How can we help you?

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@rosemarya

Hi, banzai. I want to extend a welcome to Mayo Connect. I don't know to whom you are directing your post about a veteran's section, Did you mean to inquire about one in your area?
I am glad that you found Connect because Mayo Clinic Connect is an online community so it is available to you anywhere, anytime.
Welcome and thank you for your service to our country.

How are you feeling? Is your diabtes controlled? How can we help you?

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I was treated for diabetes but didn’t have it
It was liver failure

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@banzai

I was treated for diabetes but didn’t have it
It was liver failure

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That’s too bad. Are you seeing a gastroenterologist?

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Yes he gives pills
I’m going use alt meds

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@banzai

I was treated for diabetes but didn’t have it
It was liver failure

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@banzai what type of liver failure do you have? Mine was from cirrhosis.
You mention alternative medications. What are they, and has your gastroenterologist or hepatologist prescribed them?
I can understand being leery of regular medications, but many alternative medications have negatives also. There is now much they can do to help with liver problems.
I will be curious to hear how the alternative medications are working for you, I hope they will be effective.
JK

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I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new - Add your updates, too.

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@rosemarya: Do you have any info about Psoriactic Cirrohsis, non-alcohol related? Someone close has been diagnosed & given a pretty dire prognosis. Family Would like him to get a second opinion and/go to Mayo? What are treatments, long term consequences, successful outcomes, etc

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@suecreader

@rosemarya: Do you have any info about Psoriactic Cirrohsis, non-alcohol related? Someone close has been diagnosed & given a pretty dire prognosis. Family Would like him to get a second opinion and/go to Mayo? What are treatments, long term consequences, successful outcomes, etc

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I was treated for diabetes for five years then got civil doc diagnosed me as end stage cirrhosis liver. Va pursed around last year n I got Medicare n tricare for life but all say too late or not bad enough for transplant now.
I’m shutting down my stomach n all keep me in pain. All I get is pills. Western Med way. Going use eastern remedies.
Get second opinion yes and best facilities. Time is urgent. Sorry. If I sleep couple hours night or eat I’m ok. For a bit but too weak. Jim

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@rosemarya

I am constantly amazed at the level of support and compassion that all of our members are share so generously. And with that in mind, I want to drop in on some recently acitve members who came here for support for updates.

@nanaking, I am thinking about you and your brother on this rainy Kentucky morning. Were you able to schedule an appointment at UC? Will he need to be re-evaluated for the Ohio transplant list?

@frankw54, How are you getting along as you begin your 2nd year with your new liver? The last time we talked, you were wondering what to do with your time. What kind of ideas have you come up with? (I know that @contentandwell would welcome your experience in the HE discussions)

@godlygal, I hope that you have found a sense of peace and direction with your caregiver role for your friend. How are you getting along? What kind of support are you getting? How can I help you?

@shelly63, I was not familiar with Budd-chiari, so I googled it. https://rarediseases.org/rare-diseases/budd-chiari-syndrome/
I also had a rare liver disease (PSC). I am thinking about you. How did your appointment go?

Members old and new - Add your updates, too.

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@rosemarya I'll give you our Tim update. He has been doing speech for his chemo brain for about a month now. I have seen improvement! (Some days are definitely better than others.) My goal is for him to be doing well enough that I'll feel comfortable leaving him for a few days so I can help our daughter after our grandchild arrives the end of March!
Blessings,
JoDee

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@jodeej

@rosemarya I'll give you our Tim update. He has been doing speech for his chemo brain for about a month now. I have seen improvement! (Some days are definitely better than others.) My goal is for him to be doing well enough that I'll feel comfortable leaving him for a few days so I can help our daughter after our grandchild arrives the end of March!
Blessings,
JoDee

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Good progress for Tim and a great goal to achieve...

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