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Removing Fistula

I do not longer need my fistula and I'm wondering if I should remove it so that I have normal blood flow on my arm and my avoid any unnecessary complications in my arm in the near future.

Is the procedure to tie off/remove the fistula simple? simpler than creating the fistula? How long is the recovery. Can anyone that has done this share their thoughts?

Thank you!

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Replies

  • I went to work 10 days after my fistula removal. But I didn’t use that arm. The reasons for me to remove the fistula:

    1. It’s getting too big, bigger than a pin pon ball. 

    2. It has been 9 - 10 years after transplant. My kidney doctor think it’s ok to remove it. 

    3. I would not move it if I had opinions. It has been working very well for about 9-10 years before the procedure. 

     

  • All these comments very negatively opposing fistula reversal. Respect the individual that wants it removed and not chastise.The decision factors individuals health, psychological, self esteem and TX quality. If you have high BP, diabetes, initial renal failure being due to glomerular diseases etc, then maintaining fistula is prudent. However, like me who had PKD, bilateral nephrectomy, and highly matched TX and are in perfect health otherwise then get it removed. Save the wear on your heart and live a fulfilling Life. 

  • Just recovering from 30 days post kidney transplant and was wondering about my fistula being removed. Thanks for the info, I'll gladly keep mine. Best of luck to all. ESRD is a challenge, just have to keep a positive attitude, many folks unfortunately have a much worse medical condition.
  • I know this discussion is old, but if there are new members like me reading it for the first time, I would like to put in my two cents if I may. I know it isn’t going to make any difference for you, Messi, because you have obviously made up your mind. However, my input may help someone else in making that decision in the future. I have had ESRD for over 34 years. Total renal failure at age 19; I am now 53 yrs. old. In December 1983 I had my fistula placed in my lower left arm. Something I remember, is that when I first started hemo, the techs used to feel my fistula and comment; “this is a good one; it should last a long time.” At the time I didn’t give that statement much thought until I started seeing fellow patients have trouble with theirs. Many had clotting and other problems develop to the point that some had to have another one placed in. Six months after starting dialysis, I got a transplant from my father. I remember a young teen girl who was a patient on hemo also had her transplant around the same time. Within a couple months post-transplant, she had her fistula removed; citing that it “looked ugly and she wanted to appear like a normal person.” I left mine in. Ironically, both our kidneys only lasted about five years. When my kidney had an acute rejection, I got so sick it wasn’t even funny. They had to remove my kidney and place me back on dialysis. My point being…, I can’t image being that weak and sick, having major surgery to remove the kidney, and then on top of that, have both a temporary subclavian catheter and a new fistula placed in another arm or leg. I was so glad that I did not remove my fistula and could start back on dialysis immediately. Unfortualey for that girl I mentioned, she had to have another fistula installed, which then she had all kinds of trouble with it as it was always clotting off. She should have stuck with the first one which never gave her any trouble.

    After going back on dialysis for eight more years, I finally got another transplant; a cadaver. That one remarkably lasted 22 years. In September of this past year, it finally lost its function to the point of needing dialysis. Believe it or not the original fistula I had placed in my arm from back in 1983 still worked! Now, I opted to go with peritoneal dialysis this time around, but it’s a comfort to know that if somethings goes wrong with PD, I still have my fistula to fall back on.

    Now you may ask me… Is my fistula ugly? Yes… Do I cover it up all the time? Yes…. Does it cause my arm to go numb if I cut off circulation while sleeping at night? Yes… Will I have it removed if and when I get another transplant? A resounding, NO……..

    • Thankyou for posting this.  I, too, had a "good" fistula, which I kept.  My first Tx lasted thirteen years, I was able to resume hemodialysis without any surgery or waiting for it to "mature" to reach full capacity.  I'm not worried about being normal, I never was before anyway.

      One note, most Tx centers do not encourage removing a fistula, unless there is an issue, considering any surgery as a possible source of infection.

    • Dear David Reyes, thank you for sharing your story and your thoughts. I do really appreciate it and I hope others do as well. I wanted to point a few things: You mentioned "I know it isn’t going to make any difference for you, Messi, because you have obviously made up your mind." However I do not remember saying "I made my mind up" or "I will remove it". I simply gave my opinion and tried to remain neutral and I said "There is no rule that applies to ALL and each person is different, each case is different. Whatever each person decides should be based on a personal decision with the advice of the local nephrologist and the transplant team." Each person is different. If one size fits all then why would we go through labs to measure tacrolimus levels ? Why would they not just prescribe the same medication and same mgs to everyone ? 

      Now as far as your story, thank you again for sharing. 22 years is indeed remarkable. You must have taken good care of your kidney. God willing I hope to have mine for many many years. You still have your fistula and it still works and that is a blessing. I asked 2 Nephrologist, 1 cardiovascular and 1 surgeon "how long will the fistula work" ? All of them said "We don't really know" and in fact for some people it stops working a few months after transplant. Then there are the lucky ones like yourself who still have it. Some people may have bad fistulas and need to have them ligated. Other people may not see the need to have it and to them the cons outweigh the pros. In either case it is each person decision in consultation with their doctors.

      Please do not take this the wrong way. Your opinion is very valuable as well as mine and I'm glad we have this website/forum to have informative and friendly discussions. Thank you again for replying to my post. Best Regards!

  • Thank you all for your wonderful comments and your guidance. Here is my personal opinion: We can't live with fear of what will happen. What we can do is eat healthy, drink lots of water, take our medications, exercise, think positive and enjoy every minute of every day we are blessed with. A fistula makes sense to have when it is needed. But when it is not, it is better to remove it. A fistula it is NOT a "natural", "normal" vein nor a normal condition of the arm and the body. It is made to allow an access but that is it. We should try to do what is natural and stay away (as much as we can when we can) from what is not. A fistula does increase the heart workload since it has to pump more blood out to that area. There is no rule that applies to ALL and each person is different, each case is different. Whatever each person decides should be based on a personal decision with the advice of the local nephrologist and the transplant team. 

    • I definitely agree that "Each person decision should be based on on the advice of the local nephrologist and the transplant team", HOWEVER, sometimes it is better to be safe than sorry...

      Personally, I was lucky enough to not need a fistula but in the past few years I have spoken to different recipients and it seems like a majority like to leave it in because of the complications that can occur afterwards... However, as you mentioned, we can't live in fear all the time and should be enjoying life.

      Honestly my friend, all i can say is to continue to research and ask around about people's difference experience that had it removed. Also, make you understand ALL the possible side effects of having it removed vs leaving it in.. It wouldn't hurt to pray for guidance as you decide what to do....

      I sent you a friend request, feel free to keep in touch.

      • Herbert your point is well taken. I do indeed agree with researching and analyzing the data to make well informed decisions. But after a while there is only so much analyzing we can do before we start to get overwhelmed. Sometimes we must take that information, ask for guidance and hope we can find the answer in our heart. I have learned to make the most out of this wonderful life. No fears, no regrets. Just living life to the fullest and one day when my creator calls me I will be happy to go knowing I enjoyed every minute of the ride.

  • I was told to hang on to my fistula for u never know if u will ever need it again n especially if I wasn't having any pain. There was a similar question that was asked a while back n u may be able to find the post about removing fistula. Or maybe can tell u from their experiences. Good luck. 

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