Kidney
Issues after kidney transplant
Updated August 4, 2021
in Kidney
I was fortunate to receive my kidney transplant in September of 2020. At my advanced age I was surprised and elated to receive this gift.
My transplant team has been fantastic and has been aggressive in helping me fight issues as they come up and my kidney is functioning at a high level.
I have had issues with the BK virus which is proving difficult to get under control and also my deceased donor had Epstein Bar which has responded to cutting back on my rejection meds allowing my immune system to work at a higher level but as you all know this carries a risk of rejection. It has definitely been a roller coaster ride but I would do it all over again.
Has anyone had any of these issues and successfully had a good outcome?
Thank you
Roger
1 - 11 of 11 Replies
Transplant Patient
Not kidney but I had EBV with my liver. It was a pain in the butt to treat, and I actually ended up with cholangitis and sepsis because of it. I’m currently EBV negative (I was active for 4-5 months)
during that time I really focused on giving my body good rest, and eating tons of fresh fruit and veggies.
I had a kidney, but I have flare ups of my EBV when I get stressed or overworked. Lots of rest and good diet help a lot. My rejections meds can’t get any lower at this point.
I had to force my self into the realization that if I had to go to bed really early to continue to work and survive, that’s what I would do. That’s has made it manageable for me.
Transplant Patient
@bsmeltzer yes! I love that. Even though we may not be able to address EBV through meds there are still other ways available to us to cope and thrive
I am on the transplant list for three years (I live in NYC Area wait time is 7 years). No luck with matches with family and friends. Prior to your transplant did you suffer from chronic exhaustion. Did the transplant help relieve this?
Transplant Patient
@Jackie i’m sorry you haven’t had any luck yet. I had 5 people tested as living donors and they were all rejected. That pain is tough!
I can only speak to my experience but what I’ve read is fatigue is really common pre transplant and it does get better once you get into the recovery process. I saw noticeable differences in energy in about 3 month increments (so at month 3 post op, month 6…)
Thanks. It gives me hope that the destiny is worth the journey!
Transplant Patient
it's worth it. It's hard, and there were many times I wanted to quit, but it can also be so beautiful if you let it.
Jackie, yes fatigue was a big problem but was better after my transplant but one of my issues post op I was diagnosed with a fib which caused fatigue again and shortness of breath. Had an ablation performed which did not work so I am periodically in and out of a fib. It is definitely a journey but I wouldn’t change a thing.
I’m 3 years out from kidney transplant in May of 2018. I have done really well - labs excellent, etc., but I am very fatigued. Drs say not due to transplant or meds, but I have no energy, and at times feel dizzy or lightheaded. Anyone else feel this way?
@DianeG How are your blood pressure readings? I've had low readings which caused lightheadedness and fatigue. Also be sure you're staying properly hydrated as that can also cause fatigue and the lightheadedness you are experiencing. Hope it gets better for you.
@DianeG I feel the same way with fatigue. My doctors say it does have something to do with the meds, but they have to be taken. I’ve had all kinds of tests done and seen many different doctors. Everything points to the meds. So, we are working on controlling the side effects best we can, allowing myself to rest, and not get discouraged. Drinking lots of water and having things to do each day has helped me look past the fatigue while I am able. Hope you can find some answers and ways to help!