Anyone shut down their kidney dialysis fistula after transplant?

Posted by hello1234 @hello1234, Aug 19, 2021

Hi kidney transplant patients,
After a successful kidney transplant, has anyone shut down their hemodialysis fistula? If so, can you tell me a little bit about the procedure and your experience? Is it an easy process, are you sedated, healing time? After the fistula is shut down, does the vein eventually get smaller and less visible? Thanks everyone!

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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?

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I am sorry, I was on PD and did not have a fistula

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@colleenyoung

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?

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@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! 🙂

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@colleenyoung

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?

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Since I had a preemptive (before dialysis) I luckily had no fistula.

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@colleenyoung

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?

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@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.

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@cehunt57

@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.

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Oops, CE. Faulty wiring in the memory bank. My apologies. I am however appreciative that you responded to my mention of you and offer you a big "Hello!" It's been a while since our cyber paths have crossed.

Thank you also to @cmael and @peterm53. Kinda nice to bring older members back together. Thanks for responding to my mention. Have a lovely weekend.

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@hello1234

@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! 🙂

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@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.

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@missdi

@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.

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@hello1234 – Oops….I should have addressed that message to you.

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@missdi

@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.

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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?

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@hello1234

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?

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@hello1234 No problem putting in the upper right arm, just healing time took six months before I could use it. Now that I’m all healed I’m happy I had it taken out. Mine was super loud. When it’s quiet at night, you could hear the swishing, so I never had a good night of sleep. I admit the healing time was rough…..I thought it was a simple procedure to. Doctor said he was going to make a couple cuts and remove it, when I was finally able to see what was done I had pretty nice size cuts in 3 places on my arm. I didn’t expect to go through that much difficulty. My hand was the worst. Everyone heals differently. I kept it elevated and iced, then the next week used heat. The upper arm was healing fine, but I had extreme swelling in my hand. That caused me the most pain. Now that it is all healed, I’m very happy I did it. With all the needle marks and cuts, it’s not a pretty looking arm, but I’m ok with that. All worth it in the end…. Hope this was helpful.

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@missdi

@hello1234 No problem putting in the upper right arm, just healing time took six months before I could use it. Now that I’m all healed I’m happy I had it taken out. Mine was super loud. When it’s quiet at night, you could hear the swishing, so I never had a good night of sleep. I admit the healing time was rough…..I thought it was a simple procedure to. Doctor said he was going to make a couple cuts and remove it, when I was finally able to see what was done I had pretty nice size cuts in 3 places on my arm. I didn’t expect to go through that much difficulty. My hand was the worst. Everyone heals differently. I kept it elevated and iced, then the next week used heat. The upper arm was healing fine, but I had extreme swelling in my hand. That caused me the most pain. Now that it is all healed, I’m very happy I did it. With all the needle marks and cuts, it’s not a pretty looking arm, but I’m ok with that. All worth it in the end…. Hope this was helpful.

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Thank you so much @missdi . I really appreciate all of your details. Your experience is extremely valuable to me. I have an upcoming consultation appointment with my surgeon and your experience helps me to go into that conversation a little more educated. I am so sorry that you had such a difficult and painful recovery to what I thought was a simple outpatient procedure. I am very, very, very happy that all is well now with you! And I am happy that I thought to reach out to my Mayo Connect family so I had the opportunity to discuss this with you! Thank you 🙂

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@hello1234

Thank you so much @missdi . I really appreciate all of your details. Your experience is extremely valuable to me. I have an upcoming consultation appointment with my surgeon and your experience helps me to go into that conversation a little more educated. I am so sorry that you had such a difficult and painful recovery to what I thought was a simple outpatient procedure. I am very, very, very happy that all is well now with you! And I am happy that I thought to reach out to my Mayo Connect family so I had the opportunity to discuss this with you! Thank you 🙂

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@hello1234 and @missdi Thank you both for your questions and insights! I bet you have made things clearer to others, not only me!

In the not too distant future, my kidney issues may lead me to dialysis, but I am hoping to go the peritoneal route. My husband was on that for 5.5 years before his transplant. If I have to go hemodialysis route, you have given me information to consider. Thank you for that.
Ginger

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