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Post Transplant Symptoms
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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Hello Rosemary!
I do monthly labs for my liver and the numbers are “outstanding” according to the surgeon. I am going to make a appointment with a specialist (Rheumatologist) because as you were saying, you have to be proactive. I also am going to see my transplant doctor for another matter, but will bring up the subject again. When I was writing the other day, the last paragraph was cut off. What I wanted to say was, throughout the ordeal I have kept my sense of humor and have tried to stay positive. All you wonderful people have helped immensely. I have never ‘talked’ with other transplant patients before. I do not feel so alone! Thanks!
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4 Reactions@gary1864, I joined Mayo Connect because I was looking for someone who shared my disease and who had transplanted. I never met a transplant patient before my transplant. And after release from emergency hospitalization at Mayo, I stayed at the Gift of Life Transplant House in Rochester. From observing and interacting with other transplant patients, i gained confidence that I could 'survive' the surgery that I feared. When I returned home I didn't know anyone with a transplant. So, we are alike in that we all help each other. I feel that there is a special bond because we really do understand the unspoken fears and concerns that we each experience.
The fact that you are having good liver numbers is a good sign! Do you take a written list of questions when you go to see your surgeon? I do and it helps immensely.
I think you mentioned tacrolimus. I have been taking tacrolimus and cellcept for 10 years and have not had any issues with it.
Gary, I don't know where to refer you, but we do have many groups here on Connect. I wonder of there is one that relates to what you are experiencing? Have you looked? If there is any way I can help you locate something, let me know.
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3 ReactionsHi @rosemarya! Thank you so much for the welcome! Congratulations on the 10 years since your transplants. I hope all is well. I would find comfort in knowing what exactly happened with my liver. I did not drink alcohol or do drugs or anything to abuse my body knowingly. I just have to put that in the past and forge ahead now with my second chance at life. My journey began about 5 years before transplant when my liver enzymes began to run elevated. I would say though that the year before the transplant was the most difficult with the usual stabbing pains, jaundice, sleepless nights and eventually having to be tapped every other week due to ascites. As far as my recent illness, contracting the EBV was traumatic in the fact that the doctors had to cut my immunosuppressive meds to "wake up" my immune system to fight the virus. This led to a partial rejection of my new liver (from which I have rebounded) in order to fight off the virus. So, after 3 brain MRIs, 4 spinal taps, a bone marrow biopsy, and a liver biopsy, things returned to semi-normal except for the lightheadedness problems that persist. I'm sorry to ramble on and on, but that's where I stand today. Thank you for providing support to me!
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3 ReactionsHi @gingerw! Thank you for your welcome! I needed some support on my end and it looks like I may have found it! Thanks!
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3 ReactionsWelcome to Connect, @dcbrenek I too had a liver transplant, in September 2016. Thankfully mine was uneventful. I had not heard of cryptogenic cirrhosis before so I googled it. The symptoms are pretty much the same as they were with my cirrhosis which was from NASH. The immunosuppressants can be a challenge, having to be so careful of not being exposed to germs, etc. I generally fly with a mask on now, and restaurant buffets are out of the question. I did catch Legionnaire's disease but that is pretty minor compared to what you are dealing with.
It sounds as if the EBV really caused a lot of problems. It must have been a bit scary when they had to cut back on the immunosuppressants and your liver was almost rejected, but it sounds as if those problems are history now, and I hope they will stay that was -- as history.
I hope the symptoms you are experiencing now will be over shortly, but as you commented, they are not as bad as what you went through prior to transplant. You mention not being in a big city, so did you have to travel far for your transplant? I live in southern NH and there is not any hospital in the state that does liver transplants. Thankfully Boston is only about 55 miles away so I went to Mass General there and they were fabulous.
JK
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1 ReactionGinger, my annual transplant evaluation went very well. My next checkup will be next year, and I will continue with my routine labs that are drawn at home. Thank you for asking.
Here is a summary of my 3 day checkup:
Mayo is very thorough in their transplant followup care and screening. Since I have 2 transplanted organs (liver and kidney) my routine exams might be a little different than someone with a different transplant or different health conditions. I had 3 days of tests and consults as an outpatient.
-I began at 6:00 AM first morning with a blood draw that consisted of 14 vials of blood. I also had a 24 hr urine sample to turn in. A dermatology consultation with skin cancer screening, a clean catch urine sample, and a visit with my nurse coordinator were all that I had that day.
-2nd day began with a consult/exam by kidney transplant doctor. I was cleared for my routine 10 yr kidney biopsy. The biopsy proceeded smoothly, but was tense for me - abdomen is numbed with lidocane, and via an ultrasound to guide the doctor takes 3 needle punch samples that are sent to the lab for analysis. Aftterwards there is a 2-3 hour block of time for recovery, to be sure of no internal bleeding or complications. After that I had a bone density scan.
-3rd day began with a renal clearance procedure that took several hours. I then had an EKG, chest x-ray, final consult with Kidney transplant doctor, and a final consult with the liver physicians assistant. At every step of the way, I was presented with education about the procedure and educated about my status and care. I also had ample opportunity for my questions. The amazing thing about Mayo is that the lab and test results were coming thru the patient app as the day proceeded. I really like how everything was explained to me in terms of my own needs. I even had the opportunity to view an on-file CT scan that showed my atrophic native kidneys, my transplanted kidney, my transplanted liver, and all of my other organs! The doctor pointed them out to my husband and me during the consult. Modern medicine is an amazing thing! I can't get over the feeling of seeing inside my own body.
My husband and I were very tired and in bed very early every night. It is nice to be home and to sleep in my own bed.
I know this is more information than you probably wanted, however, my intent is to put it out there, and hope that it can be of use to someone.
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5 Reactions@rosemarya Wow, just reading your post makes me tired! So glad to hear that everything went well, and quite impressed with how thorough things were. You must have taken lots of notes! Post-transplant annual examinations are critical so that the experts and professionals can keep track of the quality of our lives oh, aren't they? No doubt it gives you peace of mind to have all this information in your arsenal. Thank you for sharing with us and giving us a front-row seat of everything that happens during the annual review.
Ginger
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3 Reactions@rosemarya So happy for you that your evaluation went so well. Like you, I appreciate how quickly you can get test results when you use the app. I also am amazed with modern medicine. I remember watching my heart valves open and close during my stress test last August. Thanks for your post. It is great to know that Mayo is just as thorough after your transplant as they are before your transplant.
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4 ReactionsI had my first annual checkup at Mayo April 1-3. It sounds identical to yours. Although the CPN didn’t share the pictures with me, I was able to access them online. The only comment I have is that this was my third kidney biopsy and because the doctor doing it was learning, it took much longer and I had pain in my side during it and for awhile during recovery. Some Tylenol helped.
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4 Reactions@cmael, I had a resident who was learning to do biopsies, too! He was slower than I remember from 5 years ago, but most important - painless during procedure. Tylenol afterwards.
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