Post Transplant Symptoms

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!

@dcbrenek, I am happy to add my welcome to Connect. I just returned home from my 10 year annual evaluation for liver/kidney transplant due to PSC (Primary Sclerosing Cholangitis). I have not seen the term cryptogenic cirrhosis, so I had to look it up. And I read that: _Cirrhosis is likely to have more than one cause and when the specific cause of cirrhosis is unknown, the condition is referred to as cryptogenic cirrhosis._ If that is what you had, I can imagine how confusing that must have been for you. I was actually relieved when my disease was given a name, even though it was an ugly one!

How long did you suffer with it before your transplant?
I also see that you have been quite ill in the past months. Has any of that affected your transplanted liver?

@dcbrenek Thank you for joining us at the cyber table. It seems I learn new terms everyday!
@rosemarya How was your annual transplant evaluation?
Ginger

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.

@dcbrenek Thank you for joining us at the cyber table. It seems I learn new terms everyday!
@rosemarya How was your annual transplant evaluation?
Ginger

Ginger, 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.

Ginger, 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.

Ginger, 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.

I 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.