I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on November 19, 2019, 03:36:56 PM

Title: 5-year post-transplant check-in
Post by: Deanne on November 19, 2019, 03:36:56 PM
I'm really closer to 6 years post transplant now than 5 years. I was transplanted on February 11, 2014.

I had a problem with my PTH level post-transplant and had my parathyroids removed in May 2015. That whole event was the most miserable I can ever remember. It took quite a while to recover, but I'm fit and healthy again now. My kidney has remained healthy the entire time, with no rejection episodes, and my creatinine stays around 0.8 - 0.9.

I get labs done and see my "normal" nephrologist every 6 months, and now need to go to the transplant clinic only every two years. I rarely think about being "sick," mostly  only when I want something like sushi or want to get a bird as a pet and realize I can't. My neph has given me permission to own reptiles, so I have a couple of geckos and tree frogs and plan to get a chameleon and/or bearded dragon over the next year or two, in addition to my elderly dog. Maybe a cat or two again, too, since my last remaining cat died a few months ago from age and diabetes.

I work full-time, mostly from home, just because it's an option, not for medical reasons. I think most people on my team work from home, including my manager.

I'll probably disappear again for a few more years. This site doesn't feel like part of my life anymore.

Title: Re: 5-year post-transplant check-in
Post by: MooseMom on November 19, 2019, 03:50:44 PM
I guess in one way, it's a good think that IHD doesn't feel like a part of your life, anymore, probably because it doesn't need to be.  Yeah, that's a good thing.  :thumbup;

But you know, it's good for us tx peeps to see posts like this, posts where you just tell us normal stuff of normal life.  Stuff like maybe getting a new cat to go with your reptiles.  Posts that don't focus primarily on creatinine or DSA or tac or biopsies or labs or infections or alphabet viruses.

Still, I envy your creatinine level.  The lowest mine has ever been was 1.04 this time last year, but to be fair, all of my other numbers have been "normal" for the 7 years of my tx.  I can't imagine having labs done only every 6 months and clinic visits only ever two years!  What a luxury!  That's fantastic!

Thanks for the update, Deanne.  Please come back from time to time, but only if you want to. :)
Title: Re: 5-year post-transplant check-in
Post by: Cupcake on November 19, 2019, 04:47:05 PM
Way to go Deanne. Don't tell my niece about the gecko--I always get a hotel when I visit her family and I use their pets as an excuse! (one gecko and two cats) I am one year post transplant and doing well.

Great to hear from you. Did your docs have any idea why your PTH was up even tho your transplant is doing great? Mine is up a tad and I have discussed with endocrine who seemed surprised ( I see her for osteopenia/steroids/etc.) but transplant team hasn't even checked it post transplant-I'll bring it up when I am there next April-I'm down to twice a year visits and monthly labs.
Title: Re: 5-year post-transplant check-in
Post by: iolaire on November 19, 2019, 10:17:29 PM
Thank you for the update.
Title: Re: 5-year post-transplant check-in
Post by: Deanne on November 20, 2019, 09:26:50 AM
Cupcake, I promise not to tell your niece about my reptiles.

I suspect my PTH level would have kept increasing if I'd stayed on dialysis. Since it was high at transplant, they kept testing it, with the expectation that it would return to normal within a year. Instead, hypercalcemia caused severe symptoms until they finally agreed on surgery. It was the only time that my neph seemed frightened for me and started calling regularly to make sure I was ok. By then, it was even getting difficult to talk, and when I checked into the hospital for surgery, they made me use a walker because they were afraid I'd tip over. It took about a year after parathyroid surgery for my PTH and calcium level to stabilize at a normal level. They still test both at every appointment.

MooseMom, I'll check in now'n'then.
Title: Re: 5-year post-transplant check-in
Post by: Cupcake on November 20, 2019, 01:35:04 PM
Oh my! I am glad your levels have come down! I don't think mine was any where nearly that high, I was never on binders while on dialysis. Run in my mind it was like 120 last visit to endocrine. They did start me on Prolia shots for bones. I also take Vitamin D and endocrine said to eat 3 dairy servings per day--that took some used to getting to as I was avoiding dairy while on dialysis. But I love all dairy so no problem. Thanks again.