difficulty with fistula: my fistula didn't... - Kidney Disease

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difficulty with fistula

Turttletools profile image
19 Replies

my fistula didn't work out as well as predicted, and i am considered a "hard stick"

I remind everytime that they go as low as possible with the needs (fistula too close to elbow, makes techs unconfortable to go that low. ) i bring pillow for arm. If tech is confident enough to go low, then there is no pain.

yesterday took three sticks because tech was too high and caused incredible , unbearable pain. A different tech did the 3rd stick but told me that if it didn't work I'd have to go to hospital. I was too afraid to ask what would happen.

what would happen? Does that mean i'd go back to a catheter?

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Turttletools profile image
Turttletools
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19 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

I has issues in the beginning. Part of the issues was my fistula was too new. The other issue was the tech went too fast and infiltrated the fistula. It was horrible. And instead of stopping, another person can in and redid it up higher and she did the same thing. I was in agony for a few days. The arm turned purple and hurt for some time. They tried to tell me it was my fault that I moved. But it wasn't. It was too new. They said they thought I would have to go get a fistula gram and then a stent or fistulaplasty, which is where they insert a balloon type device to open up the artery. I took off a week to heal and when I came back, only the head nurse was allowed to cannulate me. She did fine. And now the issue seems to have resolved.

Turttletools profile image
Turttletools in reply to Bassetmommer

The first time mine was used i, i ws in hospital for heart issues, fistula was 6months old. It was infiltrated and my entire arm was swollen and red, so they had to do an emergency pic line, then a catheter in chedtwhie it healed. Yes it was horrible and frighting .

One heal, started trying fistula, but wouldn't work and would have to use cath. They didnt want me to go to doctor, but i did, and with ultrasound showed i had scar tissue in area they kept trying to use.

Some techs listen when i say go low, some listen gor a while then for some readon, next time ho high. So frustrating that i have to be so assertive eveytime, its just not my nature. And yes one always blames me.

At what point should i give up and get a graft? I cannot raise my arm today without pain, but mo bruise...

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Turttletools

I know this sounds counterintuitive, but every time they injure it, it gets stronger. The pain is real, and I get it. It's probably too late to ice anything. But I use a heating pad every night while I watch TV. I wrap my arm up. Makes a big difference in my comfort. My bruising was minimal at first then as the days went on, so did the bruise. I was definitely bleeding in there for a while. The bruise went from the top hole, second infiltration, to down the arm and wrapped around the elbow and was shades of purple. As the bruise came to the surface, it was pretty dramatic. Great for getting out of chores. lolol

This is a month later and I still have bruising.

Turttletools profile image
Turttletools in reply to Bassetmommer

Lol, yeah it was pretty dramatic first time it happened. Thanks about tip on heating pad, i hadn't thought to use fir awhile.

I have to have another chemical stress test in dec to qualify for transplant list. Was really dreading it. But after yesterday, finally ready to face it with acceptance.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Turttletools

I redid my nuclear test this summer. The first time was a disaster. I thought I was going to die. My heart was really slammed. This time, I felt nothing. they have improved it over the last three year. Get on the list. You can always so no if listed, but you cannot do anything if you are not on the list.

DEZIN profile image
DEZIN

l received a graft instead of fistula. I was told that my veins were too small.

Maybe you check with Vascular Surgeon what would be best for you. If you

Adapt better with a graft, or is it that your fistula is too new.

horsie63 profile image
horsie63

My surgery is Dec 22 and based on my "tiny veins" per the 2 vein mappings I had I'll more than likely get a graft. I so want the catheter removed so I can take a bath again. I'm not looking forward to the needles however and every story I read like this makes me anxious.

Mich1949 profile image
Mich1949 in reply to horsie63

Sorry for that; we do go on a bit with our horror stories...Maybe it isn't as bad as we make out; I can sometimes go for a week or two when things go well. There are a couple of nurses in our unit who are very good, and I can relax when I know one of them will deal with me. Unfortunately, I can't choose who is going to deal with me; it's the luck of the draw.

I see patients who look as if they sail through their sessions, and who have little or no problems being needled.

I hope you will be one of those...

horsie63 profile image
horsie63 in reply to Mich1949

God I sure hope so. I've already been through a lot in the last 3 months. But they say God won't put too much on you, or something of that nature. I won't know until it happens so no real reason to stress over it.

Mich1949 profile image
Mich1949 in reply to horsie63

I know, it isn't easy. We all go through it. Take care...

Turttletools profile image
Turttletools

Sorry horsie, don't want to freak anyone out. Some days the needles work with barely a prick. Mine is just difficult because of location.

Most people in my dialysis shift don't have problems.

I've heard that needle entry in grafts don't hurt. So maybe that will work well for you.

KidneyCoach profile image
KidneyCoachNKF Ambassador

The best thing I did was learn to do my own sticks. I was in center for first 7 months but trained in center. In my 22nd year of Home Hemodialysis. In all those years the only times I was infiltrated was from nurses or techs. Hubby now does my sticks --- correction hubby infiltrated once. I will tell you why in center calls it a "hard stick."

The staff are time restrained. They are required to hurry, hurry, hurry. They don't have the luxury of taking time to properly assess the access to get a good stick in one try. At home we can do that. Some days if we can't get it one try we can pause for a few hours and come back to it. Always works for us.

I will say a fistula is not a normal occurance so the body deliberately over time can narrow (stenosis). Nothing the body does in relation to an access is your fault...NEVER. clinic staff may try to blame, punish or attach blame but it's NEVER your fault.

I've had 14 arm accesses, well over 130 fistulagrams. I've also had over 3 dozen chest/neck/groin catheters. Some have had the same access for many years, while others like me react negatively to accesses. It's part of the journey.

Grafts hurt just as fistulas. Sometimes the needle placement hits a nerve bundle and hurts the entire time. I call them do-overs. If this happens now we pull it and do over. You know your body better than anyone so if your tech, nurse cannot follow your directions of cannulating talk to Charge nurse.

You must be your own advocate.

Blessings

Jfkh30 profile image
Jfkh30 in reply to KidneyCoach

oh wow 😯 Does an arm even have room for so many accesses !

barbara55109 profile image
barbara55109

No degrees are required to be a dialysis tech. It is a low paying job with high turnover. Try demanding the nurse who did it correctly. Ask them to teach the others. Are other centers available with more experienced staff? I have encountered so many incompetent medical professionals over the years. Dr , nurses and others. I'm fed up, but also used to it.

Mich1949 profile image
Mich1949

I too had trouble with my fistula from day one.Mine was used too early - after six weeks. The head nurse was the only one who would needle me for the first three months, and it has taken another 15 odd months for nurses to stop saying " You are going to have to get something done about your fistula sorted out, it's not good enough".

I have been sent back to the vascular surgeon three times, and each time, he has said that the flow is not the best, but as good as they'll get out of me. The main reason my fistula struggles is because of low blood pressure. Every month or two, the nurses do an ultra sound flow test on me, and each time, the results are below what they expect, and each time I say " That's as good as it will be, the surgeon won't do anything". Surprisingly, they seem to accept

that, finally.

I did have a fistulaplasty once when the whole thing clotted, because of low blood pressure. They had to burn the clot out first, and then tried to widen the artery. The latter made no difference to the flow.

None of this is an easy ride...

horsie63 profile image
horsie63

I've heard that grafts can be difficult due to the synthetic tube might be hard to stick. But I've asked and there are patients there who have grafts and I'm not the only one with a catheter.

It's a very small independent center in a very rural area. The next closest is over an hour away and is much larger. So far the nurses are nice and will take the time to answer my questions. I hope that continues.

Turttletools profile image
Turttletools

good stick today, so grateful.

horsie63 profile image
horsie63

I just got my fistula in Dec so it's really only 2 months old and had never been used. I went to the surgeon who did it Feb 15 and he felt I needed a fistulagram as it hadn't "grown" up my arm like he wanted. So on the 21st I had the fistulagram and the only thing they said was my flow was too low. Now I can't feel it and went to dialysis today and the nurse was not able to hear or feel it. Have to call on Monday and find out what is next.

Turttletools profile image
Turttletools

keep putting heat on it. I had to have a 2nd fistula surgery to bring it closer to the surface. Its working better, but i'm also better at reminding the less experienced techs use the band to get better pressure. And i am no longer shy about asking for more experienced nurse when neccessary. It does get better hang in there

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