Liver transplant - Let's support each other

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

Stella25, I had alcoholic liver desease. Although, I have a friend that had PSC he was a heavy drinker for many years.

@craiger, You have mentioned some right shoulder pain. I remember when I have had liver biopsies, that I was told that I might have some shoulder pain called referred pain. In my situation, I would call it a temporary nuisance that was relieved with tylenol for a couple of days.
Have you found any relief for your pain? What have the doctors told you about it?

@luckonetj How are your creatinine levels now? Are you still on tacrolimus and drinking loads of water? Despite the change to sirolimus I do still have to drink about 80 ounces of water a day which is a problem since I have incontinence issues -- I tend to be up about 6 times a night, no matter how early in the day I drink the water.
Other than the creatinine problems how is everything else? I hope you are continuing to do well.
JK

I posted this in the kidney transplant group but I am posting here also. This is something we should all be aware of.

I just read this today and wanted to alert all of the post-transplant patients to it, although I think it could benefit everyone. Apparently when you are flying and use the toilets you are better off not washing your hands at all, rather than using the airplane water! Carry sanitizer.
I knew to not drink the coffee made with the water on airplanes but it never occurred to me that the water could be so bad that even washing hands could be bad. Our last flight was coming home from Denver on JetBlue in August. Thankfully none of us had any ill effects.
JK
https://www.huffpost.com/entry/airline-water-quality_l_5d8152f7e4b03ec1bc96639b

@contentandwell thank you so much for this heads up!

JK, I am doing fine and my creatinine level is 1.37. I expect it to rise to around 1.45 since my TACROLIMUS has increased to 3 and three. Thank you for asking and I hope you are well. I do drink around 18 glasses of water per day.

@luckonetj If your transplant center is happy with your numbers that's what matters I think. We have to trust them to know best. Mine initially said they would consider 1.40 to be my norm but then for some reason they lowered that. Now it is generally less than 1.10. I do have days when I don't manage to get all of that water down, especially if traveling.
JK

My husband and I like to say that if my transplanted organs are happy, then everybody's happy 😊

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf