Post Transplant Symptoms

Thanks for your imput. I am going to read up on these conditions. My doctors (both my primary and liver) do not really listen to me when I describe my symptoms. Saying I’m frustrated is an understatement. It’s been 3 1/2 years since the transplant and I have been despairing. The heavy, leaden feeling in my head is there every waking second of every day. As I said previously, It feels like I have been awake all night without sleep. And just like it would be for a ‘normal’ person, I have a type of ‘brain fog’ making it hard to think, concentrate, or remember things. Also, It’s hard to do even the most minimal things in everyday life. Yours and other people’s ideas give me new avenues to explore. I am very grateful. I wish you, and the other people who have written the very best!

@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

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!

Hi! I'm new here but felt compelled to reply. I also contested a virus post transplant. I caught Epstein-Barr Virus with associated meningoencephalitis this past Christmas Eve. I was finally discharged on Valentine's Day. I was told I had a very severe case including "bright spots" on brain MRI. Since discharge, I have been placed on acyclovir 1 gram twice daily. Almost 3 months later now, I am still experiencing some fatigue and lightheadedness from time-to-time. The infectious disease doctor told me I was susceptible to this because of being immunosuppressed. Again, not too bad considering my life pre transplant, but a hurdle to overcome nevertheless.

@dcbrenek, I'm glad you jumped into the conversation. Welcome to Connect. What type of transplant did you have?

Hi @colleenyoung! I had a liver transplant back in December 2017 due to cryptogenic cirrhosis. Thank you for your welcome. I do not live in a big city, so I thought I’d join this forum for support. I thank you for providing that for me!

@dcbrenek, I am happy to add my welcome to Connect. I just returned home from my 10 year annual evaluation for liver/kidney transplant due to PSC (Primary Sclerosing Cholangitis). I have not seen the term cryptogenic cirrhosis, so I had to look it up. And I read that: _Cirrhosis is likely to have more than one cause and when the specific cause of cirrhosis is unknown, the condition is referred to as cryptogenic cirrhosis._ If that is what you had, I can imagine how confusing that must have been for you. I was actually relieved when my disease was given a name, even though it was an ugly one!

How long did you suffer with it before your transplant?
I also see that you have been quite ill in the past months. Has any of that affected your transplanted liver?

Hi JK, the MAYO did a full workup and other than my Carotid artery, A1c and weight (like that is not enough) nothing else was found. I do exercise at least 3 days a week and even walked 5 miles last week (The last mile was a killer). My MELD score is mainly because of my kidneys, however after my liver and kidney biopsies I know both are shot and no one knows what caused it, since I was a very light drinker. So since I'm deferred until these issues are resolved, I have time for my next wave of questions. Not only is the surgery risky (even though all my local Dr.'s strongly urge these transplants), I'm most interested in gaining my energy level back. Listening to this group that is a MAYBE. Did anyone return to normal energy? How long did you experience surgery pain? How often were medications changed? Fortunately Las Vegas (our area anyways) does not have ticks, fleas, mosquitoes, etc... There were a lot of signs that I had ammonia poisoning of the liver, unfortunately it took the local medical community over one month to figure it out. I've become disillusioned with the quality of "Medical Hospital Care" in Las Vegas and now I'm traveling to the MAYO in phoenix and I could not be happier.