I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Restorer on June 25, 2013, 01:02:29 PM
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Lots has been going on with me lately. I've been too overwhelmed to care enough to talk about it. Two weeks ago I had my fistula revised.
For months I had been insisting that my fistula was very high flow, and I was worried about what that meant for my heart, and the fistula. Over the year since I had started using it, it had grown multiple large offshoot veins, and the Transonic flow tests alternated between the 1000's and the 3000's. It was a short, but large and strong fistula. I finally convinced my nephrologist to have an ultrasound done to determine actual flow rates, and where all those accessory veins were connected.
It turned out I had a stenosis further up my arm, and with the high flow, the pressure was causing it to split off new veins (and at my elbow, break through vein valves and flow backwards through a portion, then branch off in another direction). I had a fistulagram to get a better view, but not to open the stenosis because that would have just increased the total flow rate. I was scheduled to see a vascular surgeon for having the fistula revised. The surgeon did a drawing right on the exam table paper covering at the consultation:
(http://25.media.tumblr.com/809024eb5493c28abe8de4733c11caa4/tumblr_mnuo5wFgK01qhseyxo1_500.jpg)
Compared to my fistula on the outside (with buttonholes):
(http://25.media.tumblr.com/b8724003cd3512ac7e4d6b7995d8f5e8/tumblr_mnuo5wFgK01qhseyxo2_500.jpg)
He wanted to tie off the branches, open up the stenosis, and if it looked like a good idea, slightly band the fistula to reduce the flow. He also thought transposing it - moving it up on top of my bicep, instead of on the inside of my arm - was a good thing to do. It's apparently the usual thing to do with a basilic vein fistula, but my original vascular surgeon didn't think it was necessary (and it wasn't, really, until these problems popped up).
So I had the surgery two weeks ago, woke up with a dressing from elbow to armpit and some obvious upper arm swelling, and went home.
Unfortunately, the dressing was put on before the swelling started, and the adhesive on that dressing held on tight. So tight, that as my arm swelled, the adhesive didn't budge, with caused some nasty blisters to form. One blister was 3 inches long, half an inch high, right over the new location of my fistula. I saw the surgeon about it, he took off the dressing, put Silvadene cream (used for burns) over the blisters, applied new nonstick dressings to the blisters, wrapped my whole upper arm in gauze, and told me to do the same when I change it every day.
That took care of the blisters pretty quickly. Within 5 days I was able to just knock the scabs off and have red areas that looked like sunburn where the blisters used to be, then I saw him again to get the staples out. Too bad, he decided the fistula was ready (since it didn't need to mature), so he called my nephrologist and recommended that, and she put in the order to start using the fistula, no one considering that the fistula was still right under the very sensitive skin from the blisters. Great.
We started on Thursday with 17 gauge needles, one at a lower part of the fistula that wasn't under blistered skin, but the other had to go through the sensitive skin. I don't know if it's that the skin still needs healing, or that the fistula is just naturally now very shallow at that spot, but both times it's been stuck so far, it's squirted as soon as the tip of the needle penetrated the skin. So I'm looking forward to plenty of bloodbaths. :stressed;
We used 15's on Saturday to get my flow rate back up to 400, and my venous pressure was better that it was before (which was a problem while training for home hemo - interrupted for now). Arterial pressure about the same, but it was never a problem. I've been trying hard all weekend to heal faster. In an hour and a half I get stuck again.
:Kit n Stik;
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Gosh Restorer, hope it heals right up and you are good to go.
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I feel your pain! I had a high flow fistula that read between 3000 and 4000. The vascular surgeon did a revision, and placed a piece of gortex tubing at the spot to reduce the flow. When I did the follow up ultrasound, it was down to 1000, give or take. They seemed very pleased with this number. My buttonholes were no longer usable, as the whole vein/artery had shifted from the reduced flow. I made new buttonholes, but they aren't working nearly as well as the old ones. Kind of stinks! I also had a narrowing in my shoulder area that was ballooned and opened up. Prior to fixing the narrowing, I squirted blood every time I put a needle in. My pressures were also a little high. It has settled down since recovering fully from the surgery. Hang in there! Those blisters sound awful. Also, way to protect your heart and get the ultrasound done! Why do we have to fight to protect our health? Drives me crazy!
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Yep. I haven't had a Transonic or ultrasound or fistulagram on it yet to check the new flow rates, but hopefully they're not high. The surgeon might have put a gortex band around the fistula at some point to reduce the flow - I think he mentioned that he did afterward, but I'm not entirely sure. I'll ask him when I see him again.
I really should be sticking myself with sharps to make my own buttonholes, but I'm kind of terrified of them. Blunts, with established buttonholes, I go slow, and I'm fine. Sharps, no way. Maybe once a semblance of a buttonhole has formed at each point, I'll take over and finish establishing them. I don't know.
I have a big swollen area, kind of like half a tennis ball under my skin, right around where the stenosis was. The surgeon saw it the last time I saw him, wondered what it was, and said it would probably go down - but it hasn't changed yet. I'll show it to him when I get my catheter out. It might be a hematoma, which they may leave to slowly get reabsorbed (at this rate, months?), or they might want to aspirate it or something else.
Tomorrow I'll cover myself with Tegaderm patches and take a real shower. :cheer:
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Oh! I go back to NxStage training as soon as I have buttonholes established. Less than a week of refresher training, then everything comes home.
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a real shower.
That part sounds especially good. :clap; :clap; :clap;
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I've been thinking about you and hoping that you were just out haven too much fun for us.. hum! Sorry that all this was what was going on instead but hopfully your now on the mend and will be able to do your treatments at home and all. Hope your keeping your spirits up,, sure is a lot to deal with... Sending my best wishes, and hoping for some good news soon. :cuddle;
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What a horrible experience , I really hope you can return quickly to training for Nxstage.
Lots of best wishes, and strength, Cas
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Oh! I go back to NxStage training as soon as I have buttonholes established. Less than a week of refresher training, then everything comes home.
That is great news! I have struggled with my buttonholes since the flow reduction. I had to start a new set, but can't seem to make them work like the old ones. Hopefully yours go much more smoothly and you can get that refresher in and come home. I can't say that I like dialysis, but at least I am comfortable. Best of luck to you! You can do it!