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@gary1864 Just reading your post, makes me feel frustrated for you. I know too well how that can happen when doctors dismiss what you are saying. Some seem to resent patients who have done some research and developed some knowledge, as if all patients know nothing. I think intelligent patients know to only consider reliable sources and can often figure some things out themselves, or at least provide valuable input.
Some of you have probably "heard" me say this before - when I had severe migraines, prior to having the internet, I read everything available about migraines. One of the things I read said that may migraine sufferers often know more about migraines than most doctors, unless the doctor is a migraine specialist, because they have a personal reason for finding out all they can. I think this is true of any condition.
Gary, keep researching and find out whatever you can, relying on good sources like Mayo, and NCBI, and NIH.gov. Some universities with medical schools have good information also.
I just went back over the messages on this conversation and did not see anything mentioning if you had any of these symptoms prior to transplant. Did you? I think sometimes things like that continue after transplant for some people.
I do hope you find a different transplant center to get another opinion.
JK
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Hi JK,
Regarding the symptoms that I had before my transplant. At 28 years old I had mononucleosis, the following year I had a relapse and was off work for a month. When I retired from working for the State of Michigan in Foster Care; I had a mild heart attack, but also had another bout of mono, Epstein Barr, or whatever it’s called that lasted for 14 months (basically sleeping 16 hours day) until one morning I woke up and it was gone. I felt like Rip Van Winkle after that amount of time. In a short time however (about six weeks) I was hospitalized for Hepatic encephalopathy. It was so severe, that when they asked me my name, who was president, and what year it was, all I knew was my name. The long and short of it, is that it’s hard to say where one began and ended. Or if there was a ‘melding’ or overlap at different stages. I was very sick before my transplant; and now have had my current symptoms since the transplant in 2015. Without any self pity whatsoever, I have not felt good since I retired in November 2010. Just for laughs and giggles, I also badly broke my back requiring surgery in two stages (spinal fusion) just after 2013. I had just bought a house after my wife of thirty years divorced me when I became ill. I was lifting something much too heavy for me and broke it. I keep my sense of humor and plod on, but I hope that there is an answer for what I am feeling now. Thanks to all who have written, wonderful people one and all!