Liver transplant - Let's support each other

I would not take any supplements without talking to my doctors.

I also had autoimmune hepatitis. I was diagnosed at 16. I had a very serious bleed in 1985. I had my transplant 2 years later. I will have my 38th liver anniversary in June.

@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

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

@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 ❤️.

@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!

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.

❤️

@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.

Hugs from across the border
🇨🇦🍁🤗🫂

Thank you @footballmum! I’m feeling strong and confident, but know more and more questions will arise. I know the Spirit is shining down upon me, and it sounds like on you too! Congratulations on your successful journey so far!