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AV fistula post tx

I have had a fistula in my upper left arm for 4 years now, and thankfully I've never had to use it as I had a pre-emptive cadaveric tx two years ago.

I've done quite a bit of research about what is done with the fistula after tx, and the general consensus seems to be to leave it alone if it is not causing problems since you never know when you might need it in the future.

I've just returned from seeing my tx nephrologist for my annual checkup, and while all of my labs were terrific, she expressed concern about my fistula, or, rather what seems to be something odd in my neck.  There is a place that buzzes A LOT just above my left collarbone.  When she felt it, her eyes widened like saucers.  She suspects it could possibly be an aneurysm but of course she's not sure, so I've approached my PCP about getting a referral for an ultrasound with my vascular surgeon as the tx neph suggested.  She's also concerned that the fistula is "growing" further up into my neck.

She's never seen anything quite like this, so I'm freaking out.  I know I won't have any answers until I get that ultrasound, but I'd be very grateful if any of you have any thoughts about this.

Since I've never used the fistula for dialysis, I don't know what is "normal".  My upper arm has felt "tight" for a long time, like there is a LOT of blood flowing through the vessels (which is the point, I realize).  My PCP had a quick feel of it several months ago, and he said "Oh, we have quite a few patients with these things, and we usually have them tied off." which just didn't sound right to me.  Maybe there is TOO much blood flowing through there, but I've never been concerned because I didn't realize there was any need to be.

Just looking at my upper arm, you can't see anything amiss.  No lumps or bumps, but if you were to feel my arm, you can certainly FEEL my pulse and can SEE it, too, if you were to look closely enough.

Sorry to witter on, so thanks for reading and for any thoughts you may have!

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  • I'd like to update this discussion in case anyone in the future might want some more info.

    The surgeon came by my room before I was taken for surgery.  I asked him if he was absolutely sure ligation was necessary, and he said that yes, especially because of that big buzzy vessel in my neck above my collarbone (I know, I use such medically correct terminology).

    The surgery went perfectly, but I have to say that it has all been more painful than I had anticipated in ways that I had NOT anticipated.  I expected pain at the incision site, but what I had not expected was such soreness in the areas in my shoulder/neck that housed my enlarged blood vessels.  That buzzy place in my neck is now feeling like it has been bruised; it's weird.  Or is it? 

  • sounds scary for sure.  but try not to freak out about it.  see the specialist you need to see and hopefuly it's nothing major.

    my fistula is in my right forearm, was always a strong performer.  about 7 years after my transplant it clotted where the initial vessels were crossed to create it. I was working on my car at the time, I think I may have had too much pressure on it at the time with my arm down in the engine bay.  there is a lump there now at the site that hurts if I bump it, pulses but no vibration feeling in my fistula like it used to.  my GP and specialist don't seem concerned about it. 

    I just hope that when/if the time comes that I need to use it again they can operate on the site of the clot and I can use my fistula again.  it's been 13 years now.

  • My left forearm fistula never gave me any problems after Tx (except some "thumping" heard when I sleep if it hits the pillow,) thus no action was ever taken to close it.  The "rule" used is if no issues arise "fixing" a fistula is unneeded surgery.  Perhaps a sub-clavical fistula is more problematic, especially  with the symptoms you have described.  It is wise that you are investigating the issue.

    My history was, the Tx lasted 13 years and when dialysis was again required, that 17 year old fistula was successfully used again immediately.  

  • My fistula is in my left arm. My arm swelled until it was about doubled in size. I saw the vascular surgeon who did my fistula about 5 years ago. I had my tx almost 3 years ago. The fistula has been strong the whole time I've had it. The surgeon said that is not good once it is no longer used. It diverts too much blood away from other vessels. Tomorrow he is "undoing" my fistula. Usually they are left alone after a tx unless they are causing a problem. I would agree you need to have it checked out.

  • It is good to have it checked out. I hear you this is unsetting. I have no advice, my graft stopped working right after transplant and they said most people grafts do that. Fistular (2) never worked out for me they never matured. 

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