Post Transplant Symptoms

Posted by gary1864 @gary1864, Sun, Apr 28 8:11am

It has been 3 1/3 years since my liver transplant. I am going to describe the symptoms that I have every waking moment of every day. It feels like the morning after you have been up all night without any sleep. A heavy, leaden feeling. My doctors don’t listen to me.

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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

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@contentandwell

@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

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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!

REPLY
@contentandwell

@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

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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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@gary1864

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!

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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

REPLY
@gary1864

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!

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@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.

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@cmael

@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.

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Thank you so much for taking the time to reply! That is something that I will look up and mention to my doctor. Thanks again!
Gary

REPLY
@gary1864

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!

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@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.

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@gaylea1 You are doing well with the tacrolimus though, right? I took Cellcept for a while along with the tacrolimus and then they dropped the Cellcept. Our bodies are all different and we all react differently to the various drugs.

@gary1864 That's an interesting thought that @cmael has. Have you ever been tested for Lyme? It can be more difficult to test for after the initial time, which at this point you are beyond, but if some doctor could look outside the box of transplant maybe they could put it together. Is Lyme a problem in Michigan? I know it is in the coastal communities here in New England, I know a number of people who have had it or still do have it, now chronically. When I first had the symptoms that turned out to be from cirrhosis, I was tested for Lyme.
JK

REPLY
@contentandwell

@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

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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

REPLY
@contentandwell

@gaylea1 You are doing well with the tacrolimus though, right? I took Cellcept for a while along with the tacrolimus and then they dropped the Cellcept. Our bodies are all different and we all react differently to the various drugs.

@gary1864 That's an interesting thought that @cmael has. Have you ever been tested for Lyme? It can be more difficult to test for after the initial time, which at this point you are beyond, but if some doctor could look outside the box of transplant maybe they could put it together. Is Lyme a problem in Michigan? I know it is in the coastal communities here in New England, I know a number of people who have had it or still do have it, now chronically. When I first had the symptoms that turned out to be from cirrhosis, I was tested for Lyme.
JK

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Hello,
The tacrolimus works well. Lab results are great. When I asked to be placed on another immuno suppressant to see if it might be a side effect of the medication; I was told that it was the best one, and they did not want to ‘risk’ trying me on another. I am going to research other meds so that I have a working knowledge when I talk to them again! Once again, that’s thanks to a wonderful suggestion.

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@benlam11

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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Since you are pre-transplant, the tiredness is probably from Hepatic Encephalogy. The ammonia and other chemicals being dumped in your bloodstream due to your liver being in a failing mode. I was hospitalized at one point for this. I was prescribed a medication for this which helped immensely. (Xifaxin)

REPLY
@contentandwell

@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

Jump to this post

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.

REPLY
@benlam11

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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@benlam11 You remind me of myself. I think I am doing great and then I remember all the things that are wrong with me! Fortunately, they do not impact my life much though, so that's a plus.

Every surgery has risks, but when you weigh that against what you are gaining, I believe it is worth it. I actually didn't make the decision that I would have a transplant until things got very bad about 6 weeks prior to getting "the call". At that point I was more than ready. I had told my PCP that I wasn't sure I wanted to have a transplant and he was very understanding of that. I keep meaning to tell him, that he should not discourage any patients in the future who are undecided.

If you A1c is up and your weight also, is it possible that your cirrhosis was caused by fatty liver? That was the cause of my cirrhosis.

I had an amazing recovery. I believe it was helped greatly by getting in better shape prior to my transplant, and losing weight bringing my BMI down from somewhere in the "obese" range (over 30) to just slightly overweight (26). BMI is a general indicator and not an absolute. I am fine with that BMI.

I was in the hospital for 6 days, during which I did experience some pain. By the time I went home, I would not say I had pain, I would label it more as discomfort at times. My incision was never uncomfortable. I have a lot of energy but I do get tired. That is probably due to factors other than the transplant. I exercise every day, generally 3 days of water exercise for about 1.5 hours, 3 days in the gym for about an hour, and one day at home on my recumbent bike, plus PT exercises for bursitis and core. Also, I have trouble sleeping due to other factors so that contributes to my fatigue. If your condition worsens you will find the decision on whether or not to have a transplant will be obvious. I am sure others on here who are post-transplant will also step forward and tell their own success stories.

My local doctors also did not diagnose me, in my case for almost a year and a half! It took the neurologist to suggest that it sounded like my problem was my liver. I was sent to him because of the HE episodes, they were thought to be neurological. I now know if I have anything complex I will head straight to Boston. I also now know that with the symptoms I had, a diagnosis should have been easy.

I'm glad that you are now going to a highly regarded medical center. I found that going to Mass General was such an enormous step-up from the care in my area in southern NH. As you indicate, it makes a huge difference. I am fortunate that Boston is only about 55 miles down the highway.

You mention your kidneys are also a problem. Will you need a kidney transplant also? @rosemarya had both at the same time at Mayo in MN 10 years ago and is doing great.
JK

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I had extreme fatigue after my transplant. It turned out that I had come down with CMV – which I can only describe as mononucleosis on steroids. Once you contract this disease it stays in your system. One of the downsides in having a suppressed immune system.

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Thank you for taking the time to write. I will be doing a follow up with my doctor at the Transplant Clinic and that is something I will explore. Thanks again!

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