Post transplant fistula

[jdwills83]

so I am now about 10 months out from my second transplant and doing great but wondering about the fistula in my lower arm. Do any of you have any experience with fistula removal? Can a plastic surgeon get rid of the scars? Should I get it removed at all or if I keep it..is there things I should look out for? Sometimes after I work out, it gets kinda bulgy ..is that ok?

[monrein]

Both of my fistulas (first one in left forearm, second in left upper arm) stopped working on their own accord a year or two post trx.  They clot off, become hard as a stick and them are slowly reabsorbed and the vein goes flat again.  My upper arm one was very strong and quite bulgy but now it's nothing except for the bit of artery that comes up at the inner elbow.  I work out and lift weights at the gym but have never had trouble.  My vascular surgeon was the one who assured me that this was all to be expected and that all was well despite the rather painful clotting off part that lasted about three weeks.  I think that most but not all of them eventually stop working when no longer needed.

[Rain]

I know of some patients whose fistula remained 14 years post transplant and their are using the same one for dialysis.

I have to admit a like my fistula, had only minor issues, but works well over all.

[monrein]

I was quite sad to see mine go too actually since one never knows if or when one might need the fistula lifeline again. 

[willowtreewren]

Carl's is still going strong a year post transplant. His doctors said that should it fail, they would not try to restore it. We look at it as insurance for the future in case his transplant should fail. 

Aleta

[rsudock]

I kinda have a weird backward story....I had a fistula created when the docs thought I was going to start D as a kid, I ended up getting a transplant and avoiding dialysis altogether....that fistula lasted (and is still going) all 10ish years of transplant and when I started D for the first time about July 2010. Now 7 months after transplant the fistual is still humming along....I feel like the vein feels much thicker/bigger...I hope it doesn't clot off I would be very scared if (and when) I need dialysis again.....

xo,
R

[amanda100wilson]

I would never consider get my fistula removed if I ever have another transplant.  You just never know when you might need it again, and they aren't always easy to get one up and running as mine took 1.5 years to get to the point that I could use it.  Seems like tempting fate to me, just my thought on this.

[RichardMEL]

My fistula aneurysms are quite large.... and it's still going strong 14 months post tx. At last clinic doc noticed it (wearing a short sleeved shirt, noted "ooh it's a big one isn't it?"  ) and suggested they may "tie it off" in a  year or so but no rush. He never said anything about "removing" it or even that if it stopped that those may go away. Indeed he seemed to suggest I'd be stuck with them no matter what.....

[jdwills83]

If they tie it off, can it be used or reopened again at a later date? I was getting labs done the other day and the tech said that her father-in-law had trouble with his growing to the size of an orange and causing an aneurysm. Mine has hardly grown at all and I feel like if I have it tied off now as opposed to later, I would avoid further complications.

[Poppylicious]

We look at it as insurance for the future in case his transplant should fail. 

That's how I look at Blokey's.  It reassures me ... 

[RichardMEL]

I have the aneurysms which sucks

I am happy enough to have my fistula working as long as it can because who knows when I could use it - and I fear if it is tied off or whatever then I'd never be able to use it again, so have to go up the arm - I'd rather use what I've got! The only concern the doc raised was that apparently it can cause increased stress on the heart/cardio system just having it there thrilling the world but not actually being used - I had never heard that before.

I would definitely take careful consideration and ask q's if they wanted to push this along.