Hello @ckomis,

I combined your discussion with an existing discussion titled:

"Anyone shut down their kidney dialysis fistula after transplant?"
- https://connect.mayoclinic.org/discussion/transplant-shut-down-kidney-dialysis-fistula/

I did this so you could meet members @hello1234, @blbird33, @missdi and @gingerw who all shared some similar experiences in this discussion.

I was a caregiver that was diagnosed with Pulmonary Artial Hypertension a form of PH. His diagnosis from scleroderma possibly. It was caught late so he is 18 month post DLT, 2 years after PAH diagnosis and treatment. Bless you.

@ckomis, It sounds like your transplanted kidney is doing well, but your quality of living has been affected as you have indicated by the sob that you are experiencing.
I didn't have a fistula. I have a transplanted kidney and liver and I don't know if this pertains to your situation. I saw the sob (shortness of breath) with exertion and wanted to share what I experienced. I had been taking prednisone along with my other anti rejection meds for several years at a low dose. However after I was tapered off the prednisone, I began to experience sob. For me it was really noticable when I couldn't catch my breath on the walking path or when hiking. I was eventually diagnosed with a exercise induced asthma that became active after getting off prednisone.

What has your transplant team suggested about removing the fistula if it is the suspect cause?

@ckomis I am on peritoneal dialysis right now. But, Dec 2021 I had a fistula placed in my right forearm, in anticipation to use it if it became necessary. Interesting, in Sept 2022 that fistula stopped working, and "closed down". But, it is still there!

In a couple of weeks I have an appointment with a cardiologist. I do plan to ask him if my fistula is playing a part in the concerns they are sussing out. Frankly, I had never heard of this before. Have you sought an opinion to have the fistula reversed?
Ginger