1. < Transplants

Post Transplant Symptoms

Posted by gary1864 @gary1864, Apr 28, 2019

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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JK | @contentandwell | Apr 28, 2019

@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

REPLY
2 replies
gary1864 | @gary1864 | Apr 28, 2019
In reply to @contentandwell "@gary1864 Hi Gary, and welcome to Connect. I am also a post liver transplant patient, I..." + (show)
@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

Jump to this post

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
4 replies
benlam11 | @benlam11 | Apr 28, 2019
In reply to @contentandwell "@gary1864 Hi Gary, and welcome to Connect. I am also a post liver transplant patient, I..." + (show)
@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

Jump to this post

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..

REPLY
1 reply
JK | @contentandwell | Apr 28, 2019
In reply to @gary1864 "Hello JK! Thank you sooo much for responding! I am from Michigan and had my transplant..." + (show)
@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!

Jump to this post

@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
2 replies
cmael | @cmael | Apr 28, 2019
In reply to @gary1864 "Hello JK! Thank you sooo much for responding! I am from Michigan and had my transplant..." + (show)
@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!

Jump to this post

@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.

REPLY
1 reply
gary1864 | @gary1864 | Apr 28, 2019
In reply to @cmael "@gary1864 My son has chronic Lyme disease and his symptoms sound so much like yours. It’s..." + (show)
@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.

Jump to this post

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
gaylea1 | @gaylea1 | Apr 28, 2019
In reply to @gary1864 "Hello JK! Thank you sooo much for responding! I am from Michigan and had my transplant..." + (show)
@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!

Jump to this post

@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.

REPLY
JK | @contentandwell | Apr 28, 2019

@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
1 reply
gary1864 | @gary1864 | Apr 28, 2019
In reply to @contentandwell "@gary1864 it appears as if you have explored many avenues. I can imagine how frustrating this..." + (show)
@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

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
gary1864 | @gary1864 | Apr 28, 2019
In reply to @contentandwell "@gaylea1 You are doing well with the tacrolimus though, right? I took Cellcept for a while..." + (show)
@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

Jump to this post

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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