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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 18 1:51pm
In reply to @kmlowe "Rosemary @rosemaryabraham Thank you for your support - I see many of your comments and the..." + (show)
@kmlowe

Rosemary @rosemaryabraham
Thank you for your support - I see many of your comments and the clarity and comfort you give to others by sharing your story. You’re an inspiration - someone I’m trying to emulate, but haven’t done as well as I can.

❤️

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@kmlowe
You are so sweet. Thank you (How did you know that I really needed an uplifting message this morning?)
You see many from me because I have been active on Connect for many years. I began after my own transplant when I was looking for someone to talk to about life with organ transplant. As you must be aware, it can get really lonely during the time away from the medical team when all of the questiions and concerns swirl thru our minds.

Your story is developing, and by your caring, sharing, and even asking questions you are already inspiring others!

REPLY
kim1965 | @kim1965 | 6 days ago
In reply to @rosemarya "@kmlowe, I'm so happy to read that you are off to a great start! I also..." + (show)
@rosemarya

@kmlowe, I'm so happy to read that you are off to a great start! I also went thur a pre evaluation during my initial appointment at my transplant center in Kentucky. I was expecting a consultation to learn if they would accept me as a patient, however, I, too, had a preevaluation evaluation which culminated with a meeting with the liver transplant surgeon who delivered the news that I would need a liver transplant. Evaluation and listing on UNOS followed along with a referral and transfer to Mayo MN where I succesfully received a liver and kidney transplant in 2009.
I'm also sending hugs and hope as you begin your journey. We are all here to walk with you and to answer any questions.

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@rosemarya
After contributing to the NET Neuroendocrine forum for over 2 years, I find the need to ask questions of you and contributors of the Liver Transplant site. The short story is my wife has NET, diagnosed April 2022. She did chemo, had surgery to remove pancreas tail, but it metastasized to her liver. After getting most/all of it out from surgery except the liver, our medical team gave us an option to have her get a liver transplant. After 2 additional opinions, she got her liver transplant January 2025. She needed 3 follow- up surgeries to fix a few things. She is now 2 months and a week from her surgery, and still having fluid accumulating around right lung, (drained 3 times already), and severe shortness of breath. I’m wondering if you have any resources or contacts, who either have had the liquid on the lungs issue, and/or had a liver transplant with NET? Any assistance would be most appreciated ❤️.

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pgruetz | @pgruetz | 5 days ago
In reply to @kmlowe "I had my first meeting with Mayo Scottsdale on Wednesday, and was absolutely delighted with the..." + (show)
@kmlowe

I had my first meeting with Mayo Scottsdale on Wednesday, and was absolutely delighted with the experience. I expected just a conversation then to be scheduled for testing moving forward - but they started taking blood, x-rays, etc. immediately. What a delight after waiting four months to be seen. Friendly, efficient, knowledgeable caring - applies to the many people I saw on Wednesday.

The above being said, I have been scheduled for a few other tests and an appointment with a psychiatrist before a determination is made whether to put me through the transplant evaluation process or not. So I guess this is a pre-evaluation evaluation! My question is this: My Dr wanted me to meet with the psychiatrist as soon as possible, so they can determine if I’m likely to relapse, and to get me in some sort of alcoholics’ support group (8 mos without a drink). Can anyone share what type of groups or treatment is done for this? My Dr mentioned AA, but are there other possibilities? I appreciate anyone sharing what they have experienced or know.

Cheers

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They had me do AA meetings online it’s not a big deal and truthfully it didn’t do anything for me I felt after all this being sick 🤢 and after my surgery trust me you will have zero desire to ever drink again and I wasn’t even a big drinker I had a combination of issues including being poisoned by a ex girlfriend, do whatever they want willingly and that includes all other drugs or they will reject you

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1 reply
Curses | @kmlowe | 5 days ago
In reply to @pgruetz "They had me do AA meetings online it’s not a big deal and truthfully it didn’t..." + (show)
@pgruetz

They had me do AA meetings online it’s not a big deal and truthfully it didn’t do anything for me I felt after all this being sick 🤢 and after my surgery trust me you will have zero desire to ever drink again and I wasn’t even a big drinker I had a combination of issues including being poisoned by a ex girlfriend, do whatever they want willingly and that includes all other drugs or they will reject you

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@pgruetz
I have no issues doing the therapy and, as a matter of fact, started an intensive outpatient program, and will try the Mayo AA group, Twice Gifted (I’m not hesitant about the support group, but based on what I know, AA wouldn’t be my first choice, though it’s great for many. Actually trying twice gifted because of THIS forum, giving me both information and trust.
All this being said, as unwell as I’ve been without surgery pretty much ensures I don’t want to drink again!

I really appreciate your input - I will not hesitate to follow Mayo’s guidance.

Kelly

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