Fistula Problems & Questions

[SeaSand]

Hi All,
First I want to thank all of you who welcomed me to this forum - it was really heart warming.

Now I have a question.  I have an AV fistula in my lower right arm (I am left handed).  It was working great until a couple months ago.  I started having really bad nerve pain when sticking my arterial.  I was using buttonhole at the time because I was doing home hemo & sticking myself.  I thought at first I was doing something wrong, but the doc said sometimes this happens & I needed to start a new buttonhole.  I have had nothing but problems since then.  I started a new buttonhole, but after about a month, I started hitting a nerve again.  It got so bad I ended up going back into the clinic for treatment, but the techs & nurses are having problems, too.  A fistulagram shows it to be wide open, and the thrill & bruit seem healthy.  Now I feel like a pincushion - they have to stick me at least twice, usually 3-4 times to get a good arterial.  The machine alarms constantly, and now they can't even run me at 300.  Last night they sent me home after sticking me 3 times & still couldn't get an arterial. 

I go to the surgeon on Wed. to see about what can be done.  I think I need a new fistula.  Have any of you had problems like this, and if so, what did they do for you?  New fistula or 'fix' the existing one?  I'm not sure what they could do to fix it, anyway, since I seem to have a lot of nerves running down that arm.

Any feedback would be welcome.  I am getting pretty concerned about not getting a good run (or none at all).  How long can this go on before I start getting sick?

Thanks in advance!!!
SeaSand 

[Rerun]

It hurts so bad when a nerve is in the way.  I have my AV fistula in my upper left arm.  I like upper arm better.  I've had one in my lower arm and it never worked.  See what the surgeon says.  Ask if they could deaden the nerves??  I don't know, but I would ask.  Best of luck.

[boxman55]

If you have to get a new one make sure they vein map you first. Good luck ...Boxman

[petey]

My Marvin has an AV fistula in his lower left arm (he's right-handed).  It's about half-way between his wrist and his elbow.  He has a nerve that runs right across it, but he's been using it for about 3 1/2 years (buttonholes the last 16 months).  For Marvin, the arterial is always painful on the stick.  The pain usually eases after about 30 minutes on, and then it's no problem.  No problems and no pain on the venous side.

The first part of this fistula's life (about two years), Marvin was in-center and it hurt then, too (with sharps every time and using the "ladder" technique).  We're on home hemo now (  home hemo), but blunts don't seem to make any difference pain-wise.

We've discussed this with the surgeon who created it at length several times.  The bad part is that this was the last attempt at an access in either arm for Marvin (has had one graft upper left, one old fistula lower left that quit working six months after his first transplant, and three grafts upper right arm).  In between all of these grafts and fistulas, Marvin's also had 14 permcaths in the chest (alternating sides) and one temp in the groin.  The surgeon who created this (the best surgeon in the world -- I love him!) took a vein out of the back of Marvin's left arm, flipped it around to the inside of the arm, and strengthened it with a vein out of his thigh.  We call it "Marvin's Magic Fistula" because no one else thought it could be done and that he would have no other choice but to have an access in the leg (which Marvin vehemently didn't want).

The last time we talked to his surgeon, doc said, "Is it unbearable?" and Marvin said, "No, but it's mighty uncomfortable."  Doc said, "We've got to ride this horse as long as we can because the alternative is an access in the leg.  I don't know of anything else to do or anything else to try right now.  You tell me when you can no longer stand it." 

It's painful on every single stick (when I have to use sharps occasionally, the pain is no different), and it hurts me when I hurt Marvin.  But, Marvin's been a good egg about it and is doing the best he can.  I hope you can find an alternative so you don't have to endure what Marvin does.

[monrein]

My buttonholes each behave very differently.  The arterial is close to the surface and there is zero pain but I have to push so hard I think I'll go right through the whole arm.   The venous is deeper so the tunnel is longer and happens to be right on or through a nerve.  It feels exactly the same each time and kind of burns and then it goes very easily into the vein and no more pain from there on.  When the nurses used to stick me I found the nerve thing painful but for some strange reason, when I do my own sticks I'm not bothered. 


SeaSand, what's your blood pressure like during your runs?  A lower BP can sometimes cause problems with the arterial, not the pain part but the alarms part.  A lower BP can also cause clots which can mean more sticks to get a good one.  This was happening to me for a while, I'd stick, be sure I was in but no draw back and when I'd pull the needle out it would be full of clots.  Being a bit dehydrated can also cause similar problems and as strange an idea as it is to be dehydrated as a dialysis patient it happens to me occasionally because I'm so careful with my fluids that I actually don't drink enough sometimes.  I do daily short run (two and a half hours) hemo, self-care in-centre.

I hope you get it all sorted out and please let us know what you find out or how it gets resolved.

[kidney4traci]

I have only had one problem with mine, and they cauterized (sp?) the nerve running to it.  That helped.  I still have some problem with it, I have a F in my lower left arm, but not like before.  Sorry to hear about the flow problem, maybe a second opinion will help.

[Katey]

I have recently had 5 surgeries to repair clots in my shunt.  The surgeons placed a fistula in my uipper right arm (lower left arm has fistula from 9 yrs ago) where my veins were to small to have a fistula.  He then attempted in my right upper arm and the fistula clotted before I got to recovery.  They have now placed a shunt iin my upper left arm that has since clotted too many times to count.  They never started me on any type of aspirin or coumidin regimen and I have no idea why.  Anyhow, the last surgery this past week did the trick.  My shunt is finally working and I can hear the thrill. 

I hope that things with your fistula improve and don't be afraid to make suggestions to your surgeon about what you think is best.  I think to many times we all take it for granted that they know what to do but they have NEVER been through what we have all been through. 

Thinking and praying for you~!!

[Meinuk]

Have you had a fistulagram?  I had a lot of issues with my fistula when I was in center, and ended up having fistulagrams every 3 months (for stenosis and a immolization coil)

Fingers crossed that there could be a good surgical intervention, and they can fix your original fistula.