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Hello JK!
Thank you sooo much for responding! I am from Michigan and had my transplant at Beaumont Hospital in August 2015. My questions to doctors have gotten me nowhere. The first thing I thought of was the medication. I looked at side effects and it said ‘fatigue.’ What I am experiencing is not being ‘tired,’ but (as I described previously) a heavy, leaden, headachy feeling. A friend I told the symptoms to said “like a hangover.” I’ve never been a drinker, but I think it sums it up well. My analogy of being up all night without sleep is perfect. The symptoms are that severe and are always there. I do monthly lab work and the doctor (transplant) said they are “outstanding.” Sleep has nothing to do with it. My sleep, like yours, is frequently broken up; but a full nights sleep makes no difference. My general health is good. It is a mystery as to what this is. Thank you for replying. It helped me just to get a thoughtful, and I might add well written reply! I am going to seek out a second opinion from another doctor. Part of that second opinion was to talk to other people online, which I started to today. Thanks again ever so much!
Replies to "Hello JK! Thank you sooo much for responding! I am from Michigan and had my transplant..."
@gary1864 My son has chronic Lyme disease and his symptoms sound so much like yours. It’s hard to diagnose but just wondering if it’s a possible consideration. It’s similar to chronic fatigue syndrome with brain fog, extreme tiredness, etc., but can be different for each person.
@gary1864 ... I too suffer from this type of fatigue. My arms and legs are like lead and my joints in my hands, ankles and knees ache. I was just told that my white blood cell count is very low. I received my liver Nov 2018. They think it may be the cellcept (immunosupressant) that may be the cause. I was taking 1000mg daily and now I take none. I'm hoping this may clear my tired body. If not back to more tests.
My transplant was 3 years ago at the U of Minnesota my issue is I only sleep 3 hours or less and wake up. I feel tired all the time. I since the transplant I go about life but I am tired. My magnesium was 1.2 but it’s back up to 1.9 after taking 1600 mg a day. I am so grateful for my transplant and donor I had alpha 1 and had never heard of it until I turned yellow
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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