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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@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 đŸ™‚

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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 đŸ™‚

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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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@gingerw

@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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Hi @gingerw My nephrologist wanted me to do PD at home but I was too concerned that I may not be able to do it so I had a hemodialysis fistula created. One week before dialysis was going to start I received a call from HEAVEN (aka MAYO Clinic JACKSONVILLE) at 2am telling me they had a match! How was your husband's experience with PD? How long did it take him to get used to the process? Did he run into problems or was it easy once he learned what to do? Was he able to sleep through it? My cousin needs dialysis and I would like to give her some advice from someone that actually did PD for a few years. I hope your husband's transplant experience was a successful one and all is well with him.

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@hello1234

Hi @gingerw My nephrologist wanted me to do PD at home but I was too concerned that I may not be able to do it so I had a hemodialysis fistula created. One week before dialysis was going to start I received a call from HEAVEN (aka MAYO Clinic JACKSONVILLE) at 2am telling me they had a match! How was your husband's experience with PD? How long did it take him to get used to the process? Did he run into problems or was it easy once he learned what to do? Was he able to sleep through it? My cousin needs dialysis and I would like to give her some advice from someone that actually did PD for a few years. I hope your husband's transplant experience was a successful one and all is well with him.

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@hello1234 My husband chose to go with PD. He never had any issues until a month before transplant when he ended up with diverticulitis, and in the ER a tech pulled a sample of his peritoneal fluid, but it was a "dirty" catch. He ended up with an infection, and was put on antibiotics. In those two weeks, he was called twice for transplant, but couldn't. Two weeks after he ended antibiotics, he was called and got his new kidney! He slept well, after he figured out where to place the machine for minimal noise interruption [in the closet!]. He even went on long motorcycle trips carrying his machine, camping out in the desert using solar powered batteries to run the machine at night, cross-country business trips. His medical supplier [Baxter] went very responsive to drop-ship the solution wherever he needed them to.

You can go to this discussion post, and read from there. Lots of information on dialysis. https://connect.mayoclinic.org/discussion/dialysis/
Also, look at Mayo Clinic's information on hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 and on peritoneal dialysis https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725
Lastly rsnhope.org offers a bunch of information about kidney disease and different procedures.

Let me know if I can be of further assistance for your cousin?
Ginger

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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 đŸ™‚

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@hello1234 Good luck on your consultation. Ask lots of questions. I forgot to mention, I think I had a lot of swelling as my doctor failed to have my arm in a sling. I had to keep it elevated pretty high for quite some time. I think most of the swelling in my hand came from having my arm down when walking around or using the restroom. I litterly had to try to hold it up. So you may want to ask about a sling.
Miss Di

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@gingerw

@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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@gingerw You are welcome! I’m sure you will make the right decision that’s best for you. I knew I had to do the hemodialysis as I don’t sleep well and any noise would keep:me awake every night. I am so blessed that my husband was a match. He couldn’t wait to donate,

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@missdi

@hello1234 Good luck on your consultation. Ask lots of questions. I forgot to mention, I think I had a lot of swelling as my doctor failed to have my arm in a sling. I had to keep it elevated pretty high for quite some time. I think most of the swelling in my hand came from having my arm down when walking around or using the restroom. I litterly had to try to hold it up. So you may want to ask about a sling.
Miss Di

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@missdi Thank you so much for giving me the extra tip regarding the sling! Sometimes the answer to problems can be something small, but a tip like that may be invaluable and save off a lot of swelling and pain!! I really appreciate you sharing your experience and caring about me. Thank you and I am super happy that your husband was a match! Stay well and I look forward to the time we talk again on Connect again! đŸ™‚

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@gingerw

@hello1234 My husband chose to go with PD. He never had any issues until a month before transplant when he ended up with diverticulitis, and in the ER a tech pulled a sample of his peritoneal fluid, but it was a "dirty" catch. He ended up with an infection, and was put on antibiotics. In those two weeks, he was called twice for transplant, but couldn't. Two weeks after he ended antibiotics, he was called and got his new kidney! He slept well, after he figured out where to place the machine for minimal noise interruption [in the closet!]. He even went on long motorcycle trips carrying his machine, camping out in the desert using solar powered batteries to run the machine at night, cross-country business trips. His medical supplier [Baxter] went very responsive to drop-ship the solution wherever he needed them to.

You can go to this discussion post, and read from there. Lots of information on dialysis. https://connect.mayoclinic.org/discussion/dialysis/
Also, look at Mayo Clinic's information on hemodialysis https://www.mayoclinic.org/tests-procedures/hemodialysis/about/pac-20384824 and on peritoneal dialysis https://www.mayoclinic.org/tests-procedures/peritoneal-dialysis/about/pac-20384725
Lastly rsnhope.org offers a bunch of information about kidney disease and different procedures.

Let me know if I can be of further assistance for your cousin?
Ginger

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@gingerw it sounds like your husband very quickly adapted to the PD process and continued to enjoy his life....then received his transplant! Wonderful:) Thank you so much for sharing his very positive story and the detailed links to information for my cousin. I am going to show her all of your response. It's exactly what she needs to read! I especially liked to hear about his camping trip with the battery operated machine! Does your husband continue to camp and take cross-country business trips with his transplant?

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@hello1234

@gingerw it sounds like your husband very quickly adapted to the PD process and continued to enjoy his life....then received his transplant! Wonderful:) Thank you so much for sharing his very positive story and the detailed links to information for my cousin. I am going to show her all of your response. It's exactly what she needs to read! I especially liked to hear about his camping trip with the battery operated machine! Does your husband continue to camp and take cross-country business trips with his transplant?

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@hello1234 Great that she will have a chance to look at different choices.
Pros of PD dialysis - the patient feels more in charge of their own case; toxins are removed daily, so fewer instances of "down" days

As for PD, if a patient has had abdominal surgery, there may be too much existing scar tissue for success. A patient has to physically have the room to store the cases delivered every month [inside structure, not a shed or garage]. Patient has to commit to doing this everyday; you don't "lose your lifestyle" if you don't want to. My husband worked full time during his PD, and many on his job never knew he had an issue until he took 2.5 months off for the transplant! Yes, we continue to camp. No he is retired now, but made 3-4 cross country business trips post-transplant.

Ready for any other questions you have!
Ginger

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@hello1234

@missdi Thank you so much for giving me the extra tip regarding the sling! Sometimes the answer to problems can be something small, but a tip like that may be invaluable and save off a lot of swelling and pain!! I really appreciate you sharing your experience and caring about me. Thank you and I am super happy that your husband was a match! Stay well and I look forward to the time we talk again on Connect again! đŸ™‚

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@hello1234 Your welcome! Anything to help. Your right, sometimes the smallest tips can make a difference. Wishing you all the best.
MissDi

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