Liver transplant - Let's support each other

@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!

@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 ❤️.

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

@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

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.

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

I have not had a transplant for my cirrhosis, and my arthritis is very painful. I have had conflicting reports about which pain reliever is allowable given my liver condition. Can I take ibuprofen, or should I only use acetaminophen? Tylenol does very little for the hip pain, while Motrin works great. I need to resolve this once and for all. Thanks very much for considering my request.

Good morning
I was told absolutely no Advil, Motrin etc. Only Tylenol and to use with caution. I have CKD as well so things are a bit different. I would speak to your transplant nurse.

Good morning
I have not had a transplant for my cirrhosis either/yet and under no circumstances can I take anything except 2,000 mg of Tylenol a day, the others can harm the kidneys then you have double problem. I take three 650 mg a day spread out (noon, 6 pm and midnight). I too had bad hip pain as well as knee and shoulder, turns out it was bursitis and a cortisone injection into each over a period of two months helped immensely. The Tylenol was doing nothing for it as you stated but the injections fixed it for the time being, they last about a year. I can finally lay on that side again. Might find an orthopedic specialist for an opinion. What works for one, doesn't always work for everyone. KW

@alexandern, I'm sorry that you are experiencing pain that is not relieved by Tylenol. I am in agreement with @footballmum and @azkellyw that we are limited to Tylenol (before and after transplant) However, I strongly encourage you to talk to your doctor about your level of pain. Perhaps there is something else that they might want to give you for the pain control.

Many patients have arthritis pain, and I can't imagine that you are alone with this particular issue. Are you under the medical care of a doctor who is monitoring your liver? He/she will be the best person to ask. Is that possible for you to do?