I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: iolaire on December 05, 2018, 06:54:30 AM
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I’ve made the choice to have my fistula tied off and the aneurisms minimized. The Doctor’s planned procedure note on the appointment says “Repair, Pseudoaneurysm.” I’ll head into that tomorrow.
I’m now 1.5 years post-transplant, fistula placed in 2011. Prior to my transplant I only had large bumps at the point where blood was returned and it was not that major. Since the transplant the area where the needles are put in has grown significantly with no stopping. (I wonder if they did something with that arm during the transplant that caused that area to start growing.) Previously I wanted to keep the fistula as it was good and I never know when I’ll need it. But it’s starting to be sort of a pain, it can get sore and makes it hard when sleeping as to where to position the arm.
Last year I visited the surgeon who put in the fistula but it seemed like he didn’t even know that it was possible to modify fistulas and keep him. His options were tie it off or put in a graft. Obviously the graft just sounded stupid as I’m post-transplant so I didn’t go with him.
Recently I visited a surgeon recommended by my nephrologist and he seemed good. Immediately he started feeling for the arteries to figure out where it could be tied off, and noted that the aneurism has grown to the original connection point so he would need go further towards the hand to tie it off. Just based on how he felt around the arm it built confidence. He also said there was nothing he could do to minimize the aneurism and keep the fistula. I think because it was too large and he didn’t want scar tissue in there as it would weaken things. I could keep the fistula but the aneurism will keep growing. We made plans to remove the aneurism when the arteries is tied off. He said he probably would keep me overnight just to be safe, its normally an outpatient operation. But on follow-up talks with nurses the overnight stay is not documented so I’ll find out.
My reference point for this surgery is Meinuk’s post at https://ihatedialysis.com/forum/index.php?topic=18735.0 The photos no longer exist but I think I’ve looked at them in the past. I don’t think they are using the nerve block she describes. I expect I’ll be out during the surgery.
Photos pre surgery, the blue circiled area shows the pre-transplant bump.
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My fistula have very minor bumping, and does not get in the way so I don't feel particularly motivated to have it ligated. But, there is some evidence to suggest that doing so has cardiac benefits:
https://www.medpagetoday.com/meetingcoverage/aha/76286
https://academic.oup.com/ndt/article/16/2/368/1849709
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My fistula have very minor bumping, and does not get in the way so I don't feel particularly motivated to have it ligated. But, there is some evidence to suggest that doing so has cardiac benefits:
https://www.medpagetoday.com/meetingcoverage/aha/76286
https://academic.oup.com/ndt/article/16/2/368/1849709
Yes I think that is a good side effect, decreased pressure on the heart or vascular system.
I forgot to mention is that my biggest worry with this surgery is that I might have side effects on my hand. Its my left hand and I'm right handed but still its pain free except when the fistula adds some aches and pains. This will be a much more invasive surgery than the fistula placement and a lot of blood will need to find a new track around my hand/wrist/arm. Also I need to ask tomorrow what the actually do with the aneurism area, is the vein cut out or trimmed down.
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Oh, my. Those photos do tell quite a story!
I had a great fistula that I ended up never having to use, but a few years after my transplant, I noticed a bulge and a buzzing at the base of my neck that sat on top of my left collarbone. When my tx neph saw it, she was very concerned, so had me go to a vascular surgeon.
The vs explained that the fistula was "growing" and could "grow" into the blood vessels in my head. That's not something you want to hear. So it was ligated, and problem solved.
People always bang on about how you should keep your fistula after tx for the obvious reasons, but they don't tell you about the dangers it can create.
So, good look to you, iolaire! Let us know how the surgery goes, ok?
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Hi Iolaire when mine was 'tied of' the complete vein and aneurysm were removed. In some miraculous way your arm will create more veins/arteries. Your hand might get cold, and blue, and painful. Just keep using and exercising it.
Good luck with the op.
Love, luck and strength, Cas
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Hi Iolaire when mine was 'tied of' the complete vein and aneurysm were removed. In some miraculous way your arm will create more veins/arteries. Your hand might get cold, and blue, and painful. Just keep using and exercising it.
Thank you, do you recall how long it took to get back to normal? days, weeks, months?
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I think weeks (it's 34 years ago sorry)
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The fistula removal went well. They did use the nerve block to manage my pain after surgery but still knocked me out. I was in at 10 am, in the pre op waiting area by 11 and then took in at sometime around 1 pm. By 5 pm they were calling my wife to pick me up. The nerve block is deafeningly an interesting experience, one or two times I knocked the arm because I stood up and the arm just dropped down to my side. Also laying in the bed it felt like my hand was sitting near my groin when it was really laying out at an angle far from my body.
The surgeon said they left the artery in there and just removed the fistula area and bumps. I was told it would be covered with tape to seal it but they opted to use sutures to pull the sink together. When I took off the gauze today I was surprised that its just sutured and not covered at all. They said it could come off after 48 hours and I could also shower so I did that a few hours early.
Pain wise the nerve block resulted in no pain unit the morning after. It's been a strong pain but I've been able to just use tylenol 500's and have not had to use the percocet they prescribed. Yesterday I napped a good bit and I got a good night's sleep even though I'm restless and don't know exactly where to put the arm to make it feel better.
Here is the current photo. My arm is still swollen a bit. Overall I'm impressed at how normal my arm already looks. The bumps seem to be gone. I still see the needle scars on the return area up my arm.
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Wow, what a difference! I think you made the right decision. Good for you! Show us some more pics in a couple of weeks so that we can see the "after"!
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Here is a photo three months out. At this point only have hard areas of scarring under the left - hand side scar area near my wrist. Not really bothersome but I worry I'm not massaging it frequently enough for it to soften. The scarring is right between the older white scar and this one, plus up the arm towards the other scar. Each scar area is about 1/2 by 1 inch.
Its nice to be able to sleep on this arm again. I've only had it go to sleep once when under my head.
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Oh, wow. That's really interesting! Were you given instructions to massage it frequently?
Thanks for posting this pic. I'm really glad you had the surgery done and that it was successful. Is your arm still feeling OK? Any weird tingling or anything?
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Oh, wow. That's really interesting! Were you given instructions to massage it frequently?
Thanks for posting this pic. I'm really glad you had the surgery done and that it was successful. Is your arm still feeling OK? Any weird tingling or anything?
No instructions about massages but with my parathyroid surgery it was recommended. And luckily no tingling or other other side effects - this was my big worry.
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That's good news. I still, after all of these years, feel some weird sensations in my fistula. It had always caused me problems. It was always zinging and buzzing and blurping and sloshing and I hated hated hated it, but thankfully I never had to use it. But it just kept growing...