Anyone shut down their kidney dialysis fistula after transplant?

Good questions about what to expect about the procedure of closing the dialysis fistula. I wonder if @cmael @cehunt57 @peterm53 or @tucsonguy might have experience to share about closing the dialysis fistula after kidney transplant to help you prepare for what to expect.

According to this article, "Most kidney transplant recipients continue to keep this arteriovenous fistula patent after successful transplantation." But it seems like closing it can have heart health benefits.
- AHA: Closing Dialysis Fistula Improves Heart Function https://www.medpagetoday.com/meetingcoverage/aha/76286

@hello1234, was closing the fistula recommended for you?

Good questions about what to expect about the procedure of closing the dialysis fistula. I wonder if @cmael @cehunt57 @peterm53 or @tucsonguy might have experience to share about closing the dialysis fistula after kidney transplant to help you prepare for what to expect.

According to this article, "Most kidney transplant recipients continue to keep this arteriovenous fistula patent after successful transplantation." But it seems like closing it can have heart health benefits.
- AHA: Closing Dialysis Fistula Improves Heart Function https://www.medpagetoday.com/meetingcoverage/aha/76286

@hello1234, was closing the fistula recommended for you?

Good questions about what to expect about the procedure of closing the dialysis fistula. I wonder if @cmael @cehunt57 @peterm53 or @tucsonguy might have experience to share about closing the dialysis fistula after kidney transplant to help you prepare for what to expect.

According to this article, "Most kidney transplant recipients continue to keep this arteriovenous fistula patent after successful transplantation." But it seems like closing it can have heart health benefits.
- AHA: Closing Dialysis Fistula Improves Heart Function https://www.medpagetoday.com/meetingcoverage/aha/76286

@hello1234, was closing the fistula recommended for you?

@colleenyoung I appreciate the mention but I have not had a kidney transplant and I’ve never been on dialysis (yet). I am stage 4 CKD and holding thank God. I have been looking for a living donor for the past 5 years in the hopes of getting a preemptive transplant.

@colleenyoung yes, my hemodialysis fistula is growing too large and there is some concern regarding the heart. Since my kidney transplant is going well, the doctor feels the best thing to do is shut it down and if/when I need one in the future they can create a new one. They don't want me to keep my current one.
I don't think it's a big deal but I wanted to check if anyone on Connect had any experience with this procedure. Thank you so much for helping me to reach out to the possible people that may have experience with this.... I really appreciate your help! 🙂

@colleenyoung - hello, They do like to keep it in if there are no problems I’m told. But mine was so big and loud that it kept me awake most of the time so they agreed to remove it. I’m very happy it’s out as I sleep a little better. It was very painful. Swelling and pain was a big issue. I had mine done at UCSF in San Francisco. I had to hold my arm up when walking around as having it down was extremely painful. When I went back the following week, they wrapped my arm in an ace bandage and had me buy a sling. My hand swelled twice in size. Also I had horrible pain in my hand and had to go to PT for it. Trouble closing my hand. Finally almost a year later, I can open and close my hand without pain or discomfort. That big long bulge is gone except they left a stump at the beginning of it. I do have a quarter size stump there which is kinda hard and about an inch tall. I was told since I have lymphedema in my left arm, if I am ever in need of dialysis again, they cannot use it. That’s the down side. I’m not sure where they will put one….maybe do a line in my neck. I’m counting on my new kidney lasting a long time.

@colleenyoung - hello, They do like to keep it in if there are no problems I’m told. But mine was so big and loud that it kept me awake most of the time so they agreed to remove it. I’m very happy it’s out as I sleep a little better. It was very painful. Swelling and pain was a big issue. I had mine done at UCSF in San Francisco. I had to hold my arm up when walking around as having it down was extremely painful. When I went back the following week, they wrapped my arm in an ace bandage and had me buy a sling. My hand swelled twice in size. Also I had horrible pain in my hand and had to go to PT for it. Trouble closing my hand. Finally almost a year later, I can open and close my hand without pain or discomfort. That big long bulge is gone except they left a stump at the beginning of it. I do have a quarter size stump there which is kinda hard and about an inch tall. I was told since I have lymphedema in my left arm, if I am ever in need of dialysis again, they cannot use it. That’s the down side. I’m not sure where they will put one….maybe do a line in my neck. I’m counting on my new kidney lasting a long time.

Hi @missdi Thank you so much for sharing your story and giving me this information! Were you in pain when you first had surgery to put in the fistula?... Or was the swelling and pain all related to shutting the fistula down? When they tie off the artery, does the arm have enough circulation or is that the reason you had so much swelling, pain and couldn't use your hand without pain? My local surgeon said it's a very simple and easy procedure but hearing your experience makes me very concerned. It sounds like you had a full year of recovery including PT for a "simple" procedure. Would you recommend not doing it?