Anyone shut down their kidney dialysis fistula after transplant?

I would like to know of others' experiences shutting down a peritoneal catheter after transplant. The surgeon pulled out the catheter during the transplant surgery and yet there is a bump and a mass inside my abdomen from the catheter. It is not infected but I wonder how long it takes to go away, dissolve in my body. And did you massage it to help break up the scar tissue? Please let me know your experience, Thank you, BB

@blbird33 My husband received a kidney October 1, 2016, at Scripps Green Insitute in the San Diego [CA] area. He had been on PD dialysis for 5.5 years before receiving that gift of a second chance for normal life. His team did not remove the PD cathter until about 3 weeks after the transplant. At that time, they did a "trifecta", doing a kidney biopsy on the [deceased] donor kidney, removing the stent placed between new kidney and bladder at time of transplant, and the cathter. Their reasoning was if the new kidney did not wake up, he would need to stay on dialysis until it did, and they wanted a treatment option. He didn't have any problems with the healing of the site,

Some people seem to develop more scar tissue of keloid type tissue, than others do. In my case, my PD catheter has its own little emphasis on one side based on the way it exits my skin. Have you ever had scar tissue build up other places on your body, like piercings?

What might work is massaging the area gently everyday, perhaps with Vitamin E based product. It's worth a try!
Ginger

Ginger, yes, I am now massaging the area gently, but did not start until after about 4 weeks post transplant. I try to stay positive with each massage and see the scar tissue dissolving. I do not remember previous scar tissue in my body from other issues. And I remain positive most days that it is dissolving and that all is well. I am so grateful for my transplant and know all will work out ok. It helps to get your message and read other experiences. Thank you, BB

Has anyone out there been diagnosed with Pulmonary Hypertension? More than that has anyone been told their Hemodialysis Fistula may be the cause. I am 2.5 yrs post kidney transplant. Other than PH, I am doing well, but sob with exertion is terrible. God continue to bless us all.

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?

My nephrologist does not want to touch the fistula. I see a pulmonary hypertension expert next month. Maybe they can help. Thanks so much for your message i am on 5mg prednisone. It's frustrating but I would not trade my Donor gift for anything. Stay healthy.

@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

My nephrologist does not want to touch the fistula. I see a pulmonary hypertension expert next month. Maybe they can help. Thanks so much for your message. It's frustrating but I would not trade my Donor gift for anything. Stay healthy.