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Tieing off fistula after transplant

PostPosted: Thu Jan 31, 2019 6:40 pm
by laina55
Hi everyone I have been lucky enough to have had a transplant over 6 years ago and remain ok (fingers crossed). But for the last several months my fistula arm feels very heavy and aches like toothache day & night. I saw very nice doc at the QE yesterday who scanned my arm and said my arm is patent and veins are a good size.
He offered me a chance to tie off my fistula allowing for other places to make a new one if I ever have to go back on dialysis. Has anyone on here done this ? I would greatly appreciate some advice many thanks :)

Re: Tieing off fistula after transplant

PostPosted: Thu Jan 31, 2019 10:09 pm
by wagolynn
Whilst I have not been in your situation, looking around it would appear there could be advantages for your heart in tying off but I cannot find any firm information on that.

One interesting comment I came across was, rather than tying off, why not reconstruct with a future fistula in mind, I am unsure if this has been done or is just a thought.
It may be worth asking your surgeon about this.

Otherwise, I would tend to go with the surgeons recommendation, if it was me.

Best wishes.

Re: Tieing off fistula after transplant

PostPosted: Fri Feb 01, 2019 8:45 am
by Rik
Hi ...
I suffered from 'stealing' with my fistula some years after my transplant ...
which meant my heart was having to work harder just to get my blood around the rest of my body ...
and if I stood up too quickly I would get light headed and/or fall over ...
I was given the chance to tie mine off by my team or to reduce the flow ...
my choice was to have it reduced ... I am still of the mind that I might need it again some day ...
and even though I'm coming up to my 16th Tx anniversary this summer ...
it's still a fully functioning and has been described as a text book fistula even after being reduced ...
hope that helps ...

Re: Tieing off fistula after transplant

PostPosted: Fri Feb 01, 2019 2:25 pm
by laina55
Thanks for your help, I wasn't offered the chance of a reduction but I will check that with my consultant.

Re: Tieing off fistula after transplant

PostPosted: Sat Feb 02, 2019 1:16 am
by Notso
There is research suggesting that long term, av fistulas may cause cardio problems and in particular, thickening of the left ventricle.
This is relevant to me as I have mild hypertrophy of the left ventricle and will soon be having a kidney transplant. I am seeing my nephrologist on Tuesday and will be seeking advice from her.

Re: Tieing off fistula after transplant

PostPosted: Thu May 02, 2019 12:24 am
by AllenC
Wondering if others have had their fistula tied off?
I'm having the same problem as the original poster...pain/aching in the fistula arm, and sometimes a severe sharp pain where the fistula was created.
My consultant/surgeon has agreed to tie it off leaving the option to create another in the upper arm if needed.
No guarantees it will stop the pain, but that is the likely outcome.
I'm interested to here if others were successful in pain reduction.

Re: Tieing off fistula after transplant

PostPosted: Fri May 10, 2019 9:42 pm
by AllenC
Well....it's done. Had the fistula tied off this afternoon.
My consultant did say it may take time before I feel the benefit. Time will tell.
Will report back as and when if others interested.

Re: Tieing off fistula after transplant

PostPosted: Sat May 11, 2019 10:12 am
by Rik
Hi Allen..
glad you've had it done..
let's hope it does the job!!

Re: Tieing off fistula after transplant

PostPosted: Sun May 26, 2019 12:29 am
by Notso
I am 4 weeks post transplant and my nephrologist has already mentioned tieing off my fistula at a later date, all going well. He advised my of a very recent study showing that it is better for the left ventricle as well as having a positive effect on the actual transplant.
I should add that I have had a dream run with a kidney from my brother and that they like to be pretty satisfied that the kidney will kick on prior to doing it.

Re: Tieing off fistula after transplant

PostPosted: Fri Jul 26, 2019 11:59 pm
by AllenC
Reporting back as promised.
I can honestly say having had the fistula tied off it was very successful.
The constant pain and aching has completely gone. Just occasionally I get a slight twinge, but nothing of great concern.