Liver transplant - Let's support each other

@rachel5239, My wife is 6 months post liver transplant. Our team gave her an option to have a liver transplant as she had NET, and the only remaining area with NET was her liver. The team felt it was her best chance to give her the best result over time. She had the transplant in January 2025, and has had 4 follow-up surgeries to fix items. Then had fluid around the lungs for about 5 months which was drained repeatedly. Now she is still dealing with a breathing issue from the start actually, that our team just says it takes time to heal and resolve. She can only walk about 30 yards or so, and has to sit down. She spends most of her day in a chair worried about losing her breath. What if any advice/experience do you have regarding the breathing issue, if so how long did it last, and what did you do to improve it? All her blood tests are good, there doesn't appear to be major issues with the function of the new liver.

Hi,

I was diagnosed with PSC 21 years ago. Been seen at Mayo in Rochester the whole time. I am now 1 month post transplant. I have only had a problem with acid reflux and nausea for a few days after surgery. The tremors and high blood pressure are a symptom of the meds.

My labs continue to adjust to the new normal. I feel so much better than I did before.

I wish you all the best,

Roger
Pine City MN

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

@fowlair, I'm not sure whether you are having your appointments this week or starting next week. Anyway, I send my hope and a hug that all goes smoothly for you.

When I was evaluated, I was very weak and sick. There was no way I could have even gone alone. I don't remember, but there might ave been some tests/scans that involves some anesthesia-but not sure.
Is there someone who can accompany you, even though they will not be your primary caregiver? A 2nd set if ears is beneficial. Have you spoken to the evaluation team about the need for a primary caregiver to be with you?

I am just beginning the evaluation process. My appointments are over the next two weeks. Why do I need a primary caregiver there with me? I’ll be hiring a CNA as my caregiver post-transplant. I certainly can’t hire someone a year in advance to go to appointments with me.

Hi, @rachann. I want to extend my Welcome and to add my Congratulations on your new liver transplant. My transplant was 16 years ago, and I can still feel the thrill that I felt when waking from my surgery and hearing my son say in a loud excited voice, "Mom! You're not yellow anymore!" I had been seriously jaundiced, so this is my first realization that I was not dreaming! I will admit that it was an adjustment for me to get used to gradually becoming healthy again as I healed and regained my strength.

How are you feeling now that you had the surgery? Is thre anything that you wish that you had known before your transplant that might have better prepared you? Or that might even be helpful to someone else who is approaching their own liver transplant surgery/recovery?