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.

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

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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 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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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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@rosemarya

Kim, He is very fortunate to have a sister like you to take on a caregiving role and get the connections and details arranged for him. I imagine that right now he is overwhelmed with worry and not feeling good, either.
Was the contact information helpful for you?

Please tell me what I can do to lend support for you or for him. I try to check my messages regularly and be available.

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@nanaking @rosemarya Rosemary is a big step ahead of me on this, but I too will do whatever I can to help you and to lend support. I too have been through a liver transplant due to NASH cirrhosis so I know how overwhelming everything can be.
JK

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@nanaking

Yes he is being treated

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Kim, He is very fortunate to have a sister like you to take on a caregiving role and get the connections and details arranged for him. I imagine that right now he is overwhelmed with worry and not feeling good, either.
Was the contact information helpful for you?

Please tell me what I can do to lend support for you or for him. I try to check my messages regularly and be available.

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@nanaking

Thank you for responding to me. James is covered by ins. that is what we were waiting for. UK will give us all the testing info. The med.s info everything UC would need or want. My question is who do I need or how do I need to get an appointment to get things started. I am sorry for going about it this way 15 yrs ago I had a brain aneurysm in the center of my brain sometimes it just doesn't allow me to do what I need to do I'm not quite so elegant as I had been before. Not an excuse I just need help time to time. My Brother don't understand how he can go from a working man to nothing. He wants to go to work an is unable. He has applied for disability an we are waiting to hear. Thank you for your time and help Kim

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@nanaking It sounds as if you heading in the right direction, and @rosemarya is such a great help. I am sure if you follow her suggestions you will be on the right track.
I hope your brother will be cooperative, and his defiance will not stand in the way of getting him the help he needs.
JK

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