With an extremely positive experience, as well as a great prognosis, in hand from my lung Doctor, I knew my next step. The U-M hepatologist awaited... And I certainly had a feeling that the news would not be quite as positive from him.
Meeting the hepatologist was, in some ways, less stressful than my pulmonologist. Clearly, he had a tough act to follow in terms of both bedside manner as well as demonstrating his capabilities and awareness of the ins and outs of A1AT. Another Doctor once described giving a speech after my pulmonologist as akin to "coming to the plate right after Lou Gehrig."
With all of that being said, the U-M hepatologist certainly had a good working knowledge of the disease, and came across as very caring and compassionate. He scheduled me for a liver biopsy to confirm the diagnosis, and gave me his best estimate on the progression of the disease. However, even he admitted that this disease is pretty unpredictable, and that the best thing to do was watch my weight and carefully follow the blood work. The only "cure" at this point was a likely liver transplant -- the question was simply when?
While this news was not all of that different from what I had received in the past, I felt much better receiving it from someone who seemed to know much more about the disease. In addition, there were several other steps that I could take: Flu shots, Pneumonia vaccination, total avoidance of alcohol, and, when truly necessary to have any pain relievers, Tylenol instead of Motrin.
Then came the discussion that I hadn't really thought about yet, but that hasn't left my mind since -- And it probably never will.
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I do not mean to usurp what the docs are saying, but be very careful with Tylenol. It can be stressful on the liver. As a liver transplant recipient, my team at Univ of Penn limits Tylenol to only the "regular" strength of 325mg tablets. No more than 2 tabs in an 8 hour period. The good news is that I hardly ever need pain relievers anymore. I have a small jar of regular strength Tylenol in my desk at work that is about half-full. It has an expiration date of 6/09, I must have it around for a while. So as I said, I use it infrequently. Talk to your hepatologist about this, get his advice about taking Tylenol.
Hi there -- You are not stepping on any toes at all. Communication and sharing experiences -- That's the point of this, right? Your opinion is certainly appreciated!
I wasn't really clear with the post -- You are 100% correct. By what I've managed to deduce, Motrin is processed primarily by the the liver (bad), while Tylenol is processed primarily by the kidneys (not QUITE as bad). I agree with the careful use of the Tylenol, sticking strictly to an absolute maximum of the dosage limits. Thankfully, I'm not having significant pain at all now... most of my issues are with Lactulose and encephalopathy, which I will post as soon as I can get to that point of the process.
It is also wonderful to hear that you are so active and pain free well after your double transplant. You are at the place where I'm trying to arrive, and I'll make it there at some point!
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