Liver transplant - Let's support each other

That is all you get Tylenol supposedly advil is a liver killer there’s no pain killer that any doctor will prescribe because of the abuse of opioids which wrecked for everyone else and if you ask for them another huge red flag because then they believe you are drug addict , 2 years post always in pain but I learned to live with it

@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?

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

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.

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.

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 ❤️.