Liver transplant - Let's support each other

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.

@contentandwell thank you so much for this heads up!

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

@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

@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?

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

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.

Jeanne5009, Pre- liver Transplant my meld score was 10 to 15 for 8 years. My personal experiences is such that in the beginning my illness presented as a esophageal varasies. Life style changes extended my time without symptoms of end stage liver disease. I had no worries until Acidies kicked in a year before my transplant. At that point I put my house in order.

@jeanne5009 That’s a pretty low MELD. Are you even on the transplant list yet?

I think that each transplant center has their own guidelines when it comes to transplant age. I’ve heard the cutoff point at some is 70, but at my transplant center (Mass General in Boston) I’ve been told they decide not based on chronological age but on the health of the patient. Some people can be in better health at 75 than others are at 55! I worked at being in the best possible shape knowing that would serve me well in my recovery from an eventual transplant, and I was overweight, BMI was in the “obese” category, so I lost a significant number of pounds. I am still technically “overweight” but my doctors are happy with my current weight so it’s not a real worry, although I would like to drop a few more pounds and not be overweight.
My transplant happened at MELD 28, two days before I turned 69.
JK

How fortunate that you got the help you needed. My story is similar..my Meld is only 8 and Mayo watches me....like a hawk! What was your turning point? Im waiting but I really havent changed...or it is silently creeping up on me.
I will be 69 years old next week..what happens if I stay this way til 73 and then it suddenly falls apart? Will I be too old??
What do you think??