Hi,
Is there anyone who has had a haemodialysis fistula removed after a successful transplant. My consultant recommended it today under a general anesthetic as it's a bit fast, a bit strong and my skin is a bit too thin in places. I'm definately having it done, no qualms about that but I'd appreciate knowing a little more information from a patient's perspective.
Thanks...
Mgt
I have. Mine was huge . I had to push for it . It was successful but been left with lump ( like toblerone size bulge) in the crease of my arm where the artery still fills a tiny bit of vein.
I was so glad to get mine removed even with the lump that remains.
I recently went to see a surgeon who is happy to remove the lump but doubts it will go entirely. It’s not straight forward 1-2 hours but worth doing for me as I find I’m rather self conscious of it , although friends and loved ones with a less critical eye say they hardly notice it. I stopped wearing short sleeved tops … but now forcing myself to do that
.Why is your consultant saying it should be removed ?
Thanks for your reply. Pleased it worked well for you.
I'm not really bothered about how it looks, I'm kind of used to it after 7 years. It's for medical reasons. It's flowing too fast, is growing too much and might break if it's not removed.
What do you mean about it not being straight forward? Could you explain? It would be real helpful.
Good to hear from you...
Mgt
Mine was huge. Like a garden hosepipe . When they removed it the part that joins the artery to the vein ( if that’s the type you had) in my right arm isn’t fully sealed so there is a place where the arterial blood flows into what’s left of the vein causing this big lump as I described.
Because it’s complicated pressurised blood flow this sometimes happens I believe. It’s not dangerous, it’s ugly ( in my opinion) .
But the main part is removed and I’m so thankful.
They are happy to try to remove this final part of the fistula but can’t guarantee it will all go as that part of me is now altered.
ask me anything
Jo
Thanks for your reply,
It sounds like you really needed it doing. It must have been a big relief.
Appreciate your thoughts..
Have a good day
Mgt
You are at Guy’s aren’t you ? If so Francis Calder is the man for the job in my Opinion ?
ps. I didn’t need to use my fistula I got a transplant about a week before I needed dialysis which was extremely lucky …
Gratitude always .
I want mine reversed, the transplant center does not recommend it. I said let’s revisit this in one year. I used it for 11 months 3 weeks until I got a transplant.
I didn't have a fistula since I have very small veins, but did have an AV Graft in my lower Left arm. About 7 years out my arm started swelling all around the tubing. I had part of it removed with surgery, but had a lot of scar tissue so couldn't get it all out. A few years later my arm developed nerve pain in the area of the Graft. So once again I had surgery and the rest of it was removed. I think because the Graft was in my arm for so long that the nerve in elbow area was not happy. So had surgery to make the canal bigger for the nerve. When that didn't work, still had intense pain, the surgeon actually moved the nerve. Four years later and am doing great.
Hope your surgery goes well and you don't have to keep having problems like I did.
Thanks WYOAnne,
Glad to hear you are doing great now.
I have heard that there can be problems and sorry to hear you had more than your fair share.
My consultant did mention the possibility of nerve pain. Did you take anything for that at the time?
Mgt
Yes, my nephrologist OK'd me to take Gabapentin. But I couldn't take the full dose they usually give people because of my transplant. You start at a lower dose and gradually increase it. Normal adult dose is usually 600 mg taken once a day. For awhile I was 200 - 300 mg daily. It did really help, but dulled all of your nerves. After a few months I was able to wean my self off of it completely.
Thanks for the info, I'll remember that one in case the pain gets too bad. Poor you, did your pain last for months, or did it just take months to wean off the tablets?
The pain improved after a couple of months and was able to get off the Gabapentin. Only took a week to 10 days to get off the drug
Thanks for your help with this.
Have a fab weekend...
Best wishes,
Mgt
I had my transplant back in 1989 when i was 18. I had mine put in 1988. They tried the fistula in the left wrist but it did not take. I had very small arteries/veins so they had to do the graft. Back in those days they used a bovine graft. Yes literally a cows vein. I had discussed about 8 years ago having it removed. It no longer works and it has hardened. They looked into it but said at this point in time, it is so intertwined with everything else it would be diificult to do. Plus i worry because they had such a difficult time putting it in in the first place. It doesnt bother me too much. Its not like removing it is going to get rid of the years worth of needle marks. I sometimes feel like i look like a former crack head!!! But it could be so much worse.
It was interesting reading about your experience because it exactly mirrors my own, including the fistula not taking and having tiny veins! I also asked about having my graft removed after my second transplant but was told no. I stopped caring years ago what people think (I saw the looks and assumed people thought I was an IV drug user), but do wonder what would happen if I were to injure my arm. I suppose I have bigger things to be concerned about though! Ha! Anyway, wishing you continued good health!
Hello Yankcg70,
Thanks for your reply. My dad had a bovine graft in his leg; which he took great joy in pretending we, as children had kicked under the table as we wriggled about. 🙄
I suppose every fistula is different and we can only learn what we can from others.
As long as it doesn't bother you, then best left alone.
Yes the needle marks! At least the Autumn is coming, so it's back to long sleeves...😊
Take care,
Mgt
My Husbands Vascular Surgeon recommended against removing it, even though it is very large and now into his shoulder area, because transplanted organs can fail at any time and he will possibly have to go on dialysis again. He is doing great, but there is always that possibility and making a new fistula will be very difficult and more involved.
Best of health to you.
Hello 3KJP,
I can understand that and if mine was ok, I'd be keeping it too. I've always called it my just-in-case.
Got no choice in this one I'm afraid, so asking around to see what it's like to have it removed.
Thanks for your reply. All the best to you and your good man...
Mgt
Hello there. I had the debate of removing my fistula 12 years ago. It was somewhat a difficult decision as doctors mentioned of kidney failure at any given moment that I would need it again. But at the same time, my fistula gave me complications as it made my arm extremely swollen. It caused narrow veins in my shoulders and had to get stents 5x to widen the flow— only a temp solution as it only lasted around 6 months to increase blood flow/minimize swelling.
I eventually had it removed the first 6months of my tx. Although removed, it never brought my arm back to normal. It’s still larger than my entire left arm (also transparent blood veins everywhere) and I have to tiny bumps.
However glad I had it removed- no more pain- almost normal. That said, I kind of wish for plastic surgery. I feel conscious to wear short sleeves.
Take care 
best wishes!
Thanks for your insight,
I have to have it done but I always like to know about the possible outcomes before hand so I'm prepared.
Found your post real useful...👍
Mgt
guess what! I posted here before saying they wanted me to wait before removing it…it actually clotted all by itself…smaller now…
Hydronephrosis of transplanted kidney
After transplant - be very careful of your knees
Ibuprofen for pain - level of risk to kidney transplant 
after effects of kidney transplant
Elevated creatinine — six months post transplant
