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!