Transplant Facilities Follow Ups

stwbear

Hi all,

I had a kidney transplant 28 years ago (5/12/94) at Stands University of Florida. Thankfully I've done well for the most part. I have a local Nephrologist I see annually as well a annual visits to Shands for visit with the Transplant photo physicians. I've done this for 28 yrs. I know the reason I've done so well is due to my regular visits with the Transplant physician. They have picked up on things missed by my local Nephrologist.

Recently I received a letter that Shands will no longer see patients 3 years post transplant! I'm very upset and worry I may run into issues being Nephrologist are kidney Physicians but not transplant specialists thus miss things.

Do you still see your Transplant physician in addition to your local Nephrologist?

Has anyone encountered this with their Transplant facility?

Much appreciated.

TW

AliEm14

My transplant program officially discharges patients after the first year. They are still there should anything arise but after the first year you’re moved to long term transplant follow up. So I see transplant trained hepatologists every year and have pretty regular contact with my post transplant coordinator.

stwbear

Thanks. Our transplant team wants to discharge us completely and have us follow up with our local regular Nephrologist (not transplant trained). It really makes me nervous. For 28 years I've had access to my transplant team for questions and will no longer have it.

Sdey0522

@stwbear , congrats on 28 years with your Gift Of Life! 👍 (I'm only 7 + years, post Heart Tx).

I can understand why you're a little unsure about the change. Perhaps you can speak to your usual neurologist independently & convince to 'keep you as a patient'.

Unfortunately, your situation is more the norm these days - tx centers claim they don't have the bandwidth or inclination to continue the care for long term patients, because there may be many new patoents/candidates/recipients.

You could also try to meet with the senior hospital administration - perhaps they can make some sort of an expectation because there aren't so many recipients like yourself (28+ years post).

Best of luck to you. Hope it all works out. 🍀