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@gary1864 Hi Gary, and welcome to Connect. I am also a post liver transplant patient, I had my transplant in September, 2016.
Your symptoms sound unusual. Did they start immediately after your transplant? The only negative symptom I have had is due to the immunosuppressants, I have become lactose intolerant (or possibly have IBS) which was triggered by the drugs. You look fairly young in your picture so I don't think it is attributable to age.
Is it possible that something else could be causing these unusual symptoms? Have you looked into the side-effects of the drugs you are taking? I am taking sirolimus and prednisone. I was taking tacrolimus but was switched because tacrolimus was affecting my kidneys.
Are you getting enough sleep? I have trouble sleeping many nights and wake up feeling exhausted and often somewhat woozy. On those mornings I end up taking a nap after breakfast, I don't want to drive feeling that way. I am quite sure my sleeping problems have nothing to do with my transplant though, they are due to waking after about four hours of sleep and not being able to get back to sleep.
You don't mention where you are or where you had your transplant, but is there another transplant center anywhere close to you where you could get a second opinion? I wish I could say something that would be more helpful, but I have really done great since my transplant, no problems except what I mentioned. I hope you will seek out another opinion, I am very interested in hearing what they think is causing your symptoms.
JK
Replies to "@gary1864 Hi Gary, and welcome to Connect. I am also a post liver transplant patient, I..."
Hi JK, Volunteer Mentor @contentandwell I'm a pre-transplant patient on deferred status until they investigate constriction in my carotid arteries. I stay tired now. After I wake I have maybe 2 hrs of energy, which I use to get things done around the house, go to the gym, groceries, etc. Then I have to lied down until I get a second wind about 3 pm until 5 pm. Then a Major nap as I'm deep down exhausted - after which I'm up until 2 AM and I never sleep more than 4 hrs at a time. I was hoping this would go away. My Doctors are at the MAYO in Phoenix and this is another question to add to my list as well as I'm hoping to meet with a support group to get the opinions of people that have completed the operation..
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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!