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.

@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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@des46893

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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@des46893 I did not know what CMV was, so googled it. It says:

Cytomegalovirus (pronounced sy-toe-MEG-a-low-vy-rus), or CMV, is a common virus that infects people of all ages. Over half of adults by age 40 have been infected with CMV. Once CMV is in a person’s body, it stays there for life and can reactivate. Most people infected with CMV show no signs or symptoms. However, CMV infection can cause serious health problems for people with weakened immune systems and for unborn babies (congenital CMV).

You probably already had it and being on immunosuppressants activated it. I’m sorry that you have to deal with this. If they keep you on the minimum amount of immunosuppressants will that help it not get reactivated?

I’m sure that those of us who are alive thanks to transplants are grateful for the gift of additional time we have been given but immunosuppressants sure can be difficult to deal with. They are working on something new to “trick” a person’s immune system to not reject the new organ, and then they will hopefully be able to eliminate immunosuppressants, but I’m sure that is a long way off.
JK

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@contentandwell

@des46893 I did not know what CMV was, so googled it. It says:

Cytomegalovirus (pronounced sy-toe-MEG-a-low-vy-rus), or CMV, is a common virus that infects people of all ages. Over half of adults by age 40 have been infected with CMV. Once CMV is in a person’s body, it stays there for life and can reactivate. Most people infected with CMV show no signs or symptoms. However, CMV infection can cause serious health problems for people with weakened immune systems and for unborn babies (congenital CMV).

You probably already had it and being on immunosuppressants activated it. I’m sorry that you have to deal with this. If they keep you on the minimum amount of immunosuppressants will that help it not get reactivated?

I’m sure that those of us who are alive thanks to transplants are grateful for the gift of additional time we have been given but immunosuppressants sure can be difficult to deal with. They are working on something new to “trick” a person’s immune system to not reject the new organ, and then they will hopefully be able to eliminate immunosuppressants, but I’m sure that is a long way off.
JK

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I too got CMV from my donor heart but except for the valcyte i take 900mg 2 times a day i have no symptoms. We keep testing and im told maybe we will talk to an infectious diesis dr if the extra valcyte doesn't get rid of it. But honestly there is no symptoms. A very small price to pay compared to my life before transplant.

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Hi! I'm new here but felt compelled to reply. I also contested a virus post transplant. I caught Epstein-Barr Virus with associated meningoencephalitis this past Christmas Eve. I was finally discharged on Valentine's Day. I was told I had a very severe case including "bright spots" on brain MRI. Since discharge, I have been placed on acyclovir 1 gram twice daily. Almost 3 months later now, I am still experiencing some fatigue and lightheadedness from time-to-time. The infectious disease doctor told me I was susceptible to this because of being immunosuppressed. Again, not too bad considering my life pre transplant, but a hurdle to overcome nevertheless.

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Thanks for your imput. I am going to read up on these conditions. My doctors (both my primary and liver) do not really listen to me when I describe my symptoms. Saying I’m frustrated is an understatement. It’s been 3 1/2 years since the transplant and I have been despairing. The heavy, leaden feeling in my head is there every waking second of every day. As I said previously, It feels like I have been awake all night without sleep. And just like it would be for a ‘normal’ person, I have a type of ‘brain fog’ making it hard to think, concentrate, or remember things. Also, It’s hard to do even the most minimal things in everyday life. Yours and other people’s ideas give me new avenues to explore. I am very grateful. I wish you, and the other people who have written the very best!

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@gary1864

Thanks for your imput. I am going to read up on these conditions. My doctors (both my primary and liver) do not really listen to me when I describe my symptoms. Saying I’m frustrated is an understatement. It’s been 3 1/2 years since the transplant and I have been despairing. The heavy, leaden feeling in my head is there every waking second of every day. As I said previously, It feels like I have been awake all night without sleep. And just like it would be for a ‘normal’ person, I have a type of ‘brain fog’ making it hard to think, concentrate, or remember things. Also, It’s hard to do even the most minimal things in everyday life. Yours and other people’s ideas give me new avenues to explore. I am very grateful. I wish you, and the other people who have written the very best!

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@gary1864 Just reading your post, makes me feel frustrated for you. I know too well how that can happen when doctors dismiss what you are saying. Some seem to resent patients who have done some research and developed some knowledge, as if all patients know nothing. I think intelligent patients know to only consider reliable sources and can often figure some things out themselves, or at least provide valuable input.
Some of you have probably "heard" me say this before – when I had severe migraines, prior to having the internet, I read everything available about migraines. One of the things I read said that may migraine sufferers often know more about migraines than most doctors, unless the doctor is a migraine specialist, because they have a personal reason for finding out all they can. I think this is true of any condition.
Gary, keep researching and find out whatever you can, relying on good sources like Mayo, and NCBI, and NIH.gov. Some universities with medical schools have good information also.
I just went back over the messages on this conversation and did not see anything mentioning if you had any of these symptoms prior to transplant. Did you? I think sometimes things like that continue after transplant for some people.
I do hope you find a different transplant center to get another opinion.
JK

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@gary1864

Thanks for your imput. I am going to read up on these conditions. My doctors (both my primary and liver) do not really listen to me when I describe my symptoms. Saying I’m frustrated is an understatement. It’s been 3 1/2 years since the transplant and I have been despairing. The heavy, leaden feeling in my head is there every waking second of every day. As I said previously, It feels like I have been awake all night without sleep. And just like it would be for a ‘normal’ person, I have a type of ‘brain fog’ making it hard to think, concentrate, or remember things. Also, It’s hard to do even the most minimal things in everyday life. Yours and other people’s ideas give me new avenues to explore. I am very grateful. I wish you, and the other people who have written the very best!

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@gary1864 Thank you for joining us here on Mayo Clinic Connect. Gosh, your symptoms sound like my fibromyalgia! I wonder if your Dr could refer you to a rheumatologist?
Ginger

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Hello Ginger!
That is something I am planning on doing after I take a short trip next week. Thank you!

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@contentandwell

@gary1864 Just reading your post, makes me feel frustrated for you. I know too well how that can happen when doctors dismiss what you are saying. Some seem to resent patients who have done some research and developed some knowledge, as if all patients know nothing. I think intelligent patients know to only consider reliable sources and can often figure some things out themselves, or at least provide valuable input.
Some of you have probably "heard" me say this before – when I had severe migraines, prior to having the internet, I read everything available about migraines. One of the things I read said that may migraine sufferers often know more about migraines than most doctors, unless the doctor is a migraine specialist, because they have a personal reason for finding out all they can. I think this is true of any condition.
Gary, keep researching and find out whatever you can, relying on good sources like Mayo, and NCBI, and NIH.gov. Some universities with medical schools have good information also.
I just went back over the messages on this conversation and did not see anything mentioning if you had any of these symptoms prior to transplant. Did you? I think sometimes things like that continue after transplant for some people.
I do hope you find a different transplant center to get another opinion.
JK

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Hi JK,
Regarding the symptoms that I had before my transplant. At 28 years old I had mononucleosis, the following year I had a relapse and was off work for a month. When I retired from working for the State of Michigan in Foster Care; I had a mild heart attack, but also had another bout of mono, Epstein Barr, or whatever it’s called that lasted for 14 months (basically sleeping 16 hours day) until one morning I woke up and it was gone. I felt like Rip Van Winkle after that amount of time. In a short time however (about six weeks) I was hospitalized for Hepatic encephalopathy. It was so severe, that when they asked me my name, who was president, and what year it was, all I knew was my name. The long and short of it, is that it’s hard to say where one began and ended. Or if there was a ‘melding’ or overlap at different stages. I was very sick before my transplant; and now have had my current symptoms since the transplant in 2015. Without any self pity whatsoever, I have not felt good since I retired in November 2010. Just for laughs and giggles, I also badly broke my back requiring surgery in two stages (spinal fusion) just after 2013. I had just bought a house after my wife of thirty years divorced me when I became ill. I was lifting something much too heavy for me and broke it. I keep my sense of humor and plod on, but I hope that there is an answer for what I am feeling now. Thanks to all who have written, wonderful people one and all!

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@gary1864

Hi JK,
Regarding the symptoms that I had before my transplant. At 28 years old I had mononucleosis, the following year I had a relapse and was off work for a month. When I retired from working for the State of Michigan in Foster Care; I had a mild heart attack, but also had another bout of mono, Epstein Barr, or whatever it’s called that lasted for 14 months (basically sleeping 16 hours day) until one morning I woke up and it was gone. I felt like Rip Van Winkle after that amount of time. In a short time however (about six weeks) I was hospitalized for Hepatic encephalopathy. It was so severe, that when they asked me my name, who was president, and what year it was, all I knew was my name. The long and short of it, is that it’s hard to say where one began and ended. Or if there was a ‘melding’ or overlap at different stages. I was very sick before my transplant; and now have had my current symptoms since the transplant in 2015. Without any self pity whatsoever, I have not felt good since I retired in November 2010. Just for laughs and giggles, I also badly broke my back requiring surgery in two stages (spinal fusion) just after 2013. I had just bought a house after my wife of thirty years divorced me when I became ill. I was lifting something much too heavy for me and broke it. I keep my sense of humor and plod on, but I hope that there is an answer for what I am feeling now. Thanks to all who have written, wonderful people one and all!

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@gary1864 You sure have a lot of complex issues. It is tough to be able to pinpoint things with so many issues in your history. When I was hospitalized for an HE episode they also asked me who was president — Obama was. I answered George Bush! When they asked me the date I felt like, heck, you stick me in this room with no outside contact, how do you expect me to know that?
You mention being divorced. I hope you have someone close by who is a support for you. We all need that. I hope too that you do manage, somehow, to get this figured out. I feel incredibly fortunate that I suffered no ill-effects after my transplant. I am in better shape, physically, than I had been for years, and mentally if there is some decline I think it's just a function of getting older.
JK

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