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What to do with AV fistula after tx

I had my fistula created in April 2010.  Thank God I've never had to use it as I got a pre-emptive tx a year ago.  The bit where the vein is sewn onto the artery (can't remember the term...anamatosis?) is practically on the crook of my left arm.

On the face of it, there are no aneurysms or anything like that.  But you can place your hand over the entire middle third of my arm, and you can feel the ropes of blood vessels.  I am always aware if its presence.  Sometimes toward the end of the day, my arm feels sore.  Sometimes certain areas are almost painful.

I had to see my GP yesterday for an unrelated matter, and while I was there, I showed him my fistula.  He remarked that just by feeling it, he could tell there was a high flow rate through that whole area.  Well, duh.  He suggested I talk to my neph, who I suspect will send me to my vascular surgeon, etc etc etc.

Just for the record, no one in my tx team has ever mentioned doing anything with my fistula. I have not mentioned it because I just don't want another THING to have to think about right now.  I just want this whole nightmare behind me.  I know that's remiss of me, but I've been lucky in that I've not had any major problems this first year post tx, and I don't want to go opening any cans of worms.

I have read up on the subject, and the general consensus in the medical community is that the thing should be left alone unless it was causing measureable problems.  But I do worry a bit about cardiac consequences, plus any surgery carries risk.

I did do a search on this forum on this topic but was given no results, so I apologize if this topic has been talked to death.  I did find some older discussions but would like to hear newer stories with perhaps updated information.  So, is there anyone else here who has never had to use their fistula but has had it tied off?  I'd really appreciate some discussion on this.  Thanks ever so much! 

 

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Replies

  • If I were you, I'd just leave your AV Fistula alone for now. It's not causing you any problems and in fact serves as a safety measure in case your transplant begins to fail. I had mine done in 7/08 and only used it until my transplant in 9/09. A couple of years later I developed a golf ball sized aneurysm which caused my arm to hurt and my hand be numb at times. This also presented a definite life or death situation for me. If it were ruptured I would likely die. So for now:  Don't ever let them take blood from this, take your blood pressure on that arm, lift too much weight, etc etc etc and you should be ok. Before I decided what I was going to do, I also researched the subject for hours. Easy decision.

    Best wishes,

    BDR

  • I have started a separate thread with updates on this issue, but since this older thread has been highlighted, I'll post here.

    Earlier this month, I had my annual post tx checkup, and my neph expressed concern about my fistula.  She suggested I get an ultrasound to measure the blood flow.  She thought I might have an aneurysm in my neck because there is a spot just above my left collarbone that throbs and pulses.

    I have seen a vascular surgeon who, upon just touching my upper arm, said that there is too much blood flowing through that whole area and that it could affect my cardiac function.  So tomorrow, 28 May, I will be having it ligated.

    I am not altogether happy about this because I know that transplants fail and that this fistula would be my safety net.  However, I do not want to become a victim of cardiac problems that could have been prevented.  Also, this damned thing has been bugging me for 4 years now, and I want it to all go away.  Not a day goes by where my upper arm doesn't feel bruised or pinched or set on fire.  I suspected that there was a problem with it, and I should have gotten it seen to earlier, but I just didn't want to have to go through yet another procedure.

    So, I would suggest to anyone who is post tx who has a fistula to make sure it is checked regularly, all the way up the arm.  When I'd ask for mine to be checked, a nurse would just listen to it through her stethoscope.  No one ever felt my arm or my neck.

  • I had my fistula placed in my arm march 2007 received SPK transplant 3 months later. Never used it and after five years my lumps in my arm grew to the size of ping pong balls very painful  every morning id wake up and my hole entire left arm from elbow area to fingertips would be numb. My neph decided that it was appropriate to have it removed. I had it removed 2 years ago and have not had a issue with any numbness sense. I go get some occasional pains in my arm every once in awhile. if I ever have to do dialysis again I will be doing PD or jus use a perma cath. If its not bothering you I would recommend leaving it in as long as possible. Everyones bodies are different wish u the best of luck :)

    • Kay, was the procedure to remove the fistula simple? simpler than creating the fistula? what about recovery? Thanks

  • Thanks for all of the replies!

    I've read a lot about how an access can "clot off" after tx.  Now, what exactly does that mean?  When I read that, I picture a great stonking blood clot forming spontaneously and mysteriously, and then I picture bits of this clot breaking off and floating into my lungs or brain.  Surely that's not what happens.  So, can someone tell me what actually DOES happen and what it feels like?

    • Well.....it is like everything else relative to the disease process and the transplant results.....it's variable on an individual basiS... When mine clotted, it went from the A/V fistula in my right bicep up to my should area...I was on warfarin and lovenox shots for several months. This situation is not the common result but it does reinforced the notion of keeping your PCP and Nephrologist apprised of any changes so it can be safely managed.

      There was some puffiness and swelling in the affected area.....and some throbbing....
  • It is a good question and you are not complaining. That is what this site is all about, support, not who has the worse story gets billing, it is all about sharing, supporting and learning so keep on asking. No questions is a bad question!!! Wishing you the best

  • Thanks for asking this question! It's a big one for me. Like you, I am 18 months out and doing great. I too never used the fistula, got transplanted before it "matured". But it really bothers me to have it, mostly because I am tough to draw blood from and it limits phlebotomy to my right arm. I have had several conversations with the the nephrology and transplant teams and both said there was no harm in closing it off, but no harm in leaving it either. After the first year post transplant it was up to me. I am still debating. I don't want to risk an infection in having surgery but I do want it gone...
    • Well, see, that's the thing.  I'd like mine gone, too, but every surgery, no matter how "insignificant" carries risk.  I don't want to create a problem when there is none, at least at the moment.  None of my doctors have told me that keeping it is dangerous, so I think I'll leave it alone for now.  It's not a decision I have to make now, and compared with a lot of the stories I've read on this thread, I shouldn't be complaining.

  • I was advised that post transplant the access with close off....after about a year or so after my kidney TX, it did. Apparently this is a rather common occurrence.
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