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@gary1864 it appears as if you have explored many avenues. I can imagine how frustrating this must be. I hope you get some answers soon, and hopefully a solution. If it is the immunosuppressants I presume they can try out a different one, but obviously they are a “necessary evil”. I was hoping that when they changed my immunosuppressants the digestive problems would go away, but they did not. I was actually the person who figured out, after a long time, that I was now lactose intolerant. I don’t think that had been explored previously, it was just known that a large number of people taking these drugs have these lower digestive problems. At least your lab results are good, but feeling as you do probably limits your activities.
@benlam11 how long have you had this extreme fatigue? When I was pre-transplant I was fatigued but it reached an extreme point eventually. It turned out that my hemoglobin and hematocrit numbers were dangerously low and I was hospitalized for transfusions. Has your blood been tested recently?
JK
Replies to "@gary1864 it appears as if you have explored many avenues. I can imagine how frustrating this..."
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.
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Yes, my lab results from the Transplant Clinic are “outstanding,” according to my surgeon. Other bloodwork that my primary physician has ordered has been very good also. As regarding ‘extreme’ fatigue, I had mononucleosis at 28 years old and have had several bouts since; so I know exactly how that feels. I am not so much ‘tired’ in that sense (although I do have days where I am totally wiped out. But rather, it’s that horrible hung over, leaden, headachy feeling in my head. Just like when you have been up all night without sleep. It is there always. I dream of having my head ‘clear’ again. Everyone who has written to me today has helped me with their kindness and concern. I am very much overwhelmed with the response. Thank you! I have also have some new things to explore per your suggestions. All of you are very much appreciated!
Gary