Post Transplant Symptoms

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)

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.

@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

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.

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!

@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

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.

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.

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!

@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