Calling all Fistula People

[Cordelia]

I'm getting a fistula the end of this month, do any of you who have them, suffer from nerve damage in your hand from this procedure? Does your hand go numb and tingling ever?

[CebuShan]

I haven't had any loss of feeling but they went in by my elbow. Sometimes when I get stuck though they will hit a nerve and it feels like I've grabbed hold of a live wire until they move the needle.

[Desert Dancer]

Nope, no nerve damage from the procedure itself. Once in a while, though, I will hit a nerve through my arterial buttonhole if my arm is positioned just so. No mistaking that feeling! I pull back immediately. I hit it pretty bad once and had terrible pain all night, from my elbow to the middle of my hand. Hasn't happened since.

[monrein]

The hand can go numb and tingly, especially if you're sleeping on the arm in such a way that the circulation gets cut off a bit...Your arm is now supplied with blood from only one artery and one vein now that the fistula has been created.  Try to avoid laying on the arm.  If you have persistent numbness and tingling it could be "steal" syndrome and you should ask the vascular surgeon about it.

[KarenInWA]

 I get numbness and tingling during treatment, and if I sleep on it. I was told by the vascular surgeon that this can be normal. I do find it highly annoying.

KarenInWA

[Cordelia]

I take it the "steal" syndrome is a bad thing?

[dyann]

sorry to say I have had 5 fistula placements in last 1 1/2 and only one has worked,  they r trying to put in a back up one because the good one is going out but they keep failing i recently developed a look clot in the new one so now they are sending me to a thrombosis Dr to see if I have a clottig disorder so fistulas are not my friends but to be honest the one that currently works I love I can shower and no infections where when I had the cath I had infections all the time  so you will bw fine maybe some numbness abd tingling but it usually goes away in time.  sorry long winded

[monrein]

I take it the "steal" syndrome is a bad thing?

Not good but treatable.  Here's how Wikipedia describes it..... "The complications are few, but if a fistula has a very high blood flow and the vasculature that supplies the rest of the limb is poor, a steal syndrome can occur, where blood entering the limb is drawn into the fistula and returned to the general circulation without entering the limb's capillaries. This results in cold extremities of that limb, cramping pains, and, if severe, tissue damage."

[Rerun]

I have fistulas in both arms and my hands are fine.

[Pam]

I have an upper arm fistula. For the first few months I would have numbness in my hand especially when washing dishes. It did eventually go away.
Pam

[Cordelia]

Thanks, everyone     

Thanks, Monrein, for the explanation.......I'm glad to hear it's treatable.     

How come you have fistulas in both arms, Rerun?

Any of you have any experiences of when you got a fistula it reduced your Dialysis time lower than 4 hours?  My  nurse said today "maybe" this might for me, they can increase my pump volume from 400 to 450 if all runs well and it MIGHT get me off the machine a few minutes sooner than 4 hours. It's a wait and see thing, depends on a lot of things.......just curious to know your experiences here...

[CebuShan]

I'm at 3 1/2 hours. Was 4 with the catheter. As long as my clearance is good, they would like to try for 3 hours.

[Cordelia]

I'm at 3 1/2 hours. Was 4 with the catheter. As long as my clearance is good, they would like to try for 3 hours.

Yeah, I'm 4 hrs with the cath too, I'm guessing that's pretty standard. I usually run at about 35-400 pump speed. But, my neph said he wanted me to always run @ 4 hrs. *groans

But, my nurse says with the fistula, it may change *might* was the word she used

[tbarrett2533]

steel syndrome I got it!!!! YUCK!!!!

It was super, super bad when i would do treatmet (I am on PD now) While on treatment my surgeon gave me pain pills that I would take before and during and that helped, and SOME of the techs would put warm packs on my arm and seemed to help.  The surgeon also spoke of a banding surgery, however I did not want to do anything to "hurt" my "lifeline" so I preferred to suffer through my painful treatments. 

[Cordelia]

That sounds awful     

[Restorer]

My catheter has been good to me. A year and a half and no problems, and I still have good clearance at 3 hours. It's been long enough, though, and I'm tired of the nagging to get a fistula, and tired of not being able to take proper showers, so I'm working on getting a fistula.

Maybe if I'm lucky, the clearance with a fistula will be even better, and I'll feel better! 

[Cordelia]

My catheter has been good to me. A year and a half and no problems, and I still have good clearance at 3 hours. It's been long enough, though, and I'm tired of the nagging to get a fistula, and tired of not being able to take proper showers, so I'm working on getting a fistula.

Maybe if I'm lucky, the clearance with a fistula will be even better, and I'll feel better! 

Restorer, I never thought of that--the feeling 'better' part like you said. I hope I will too            because I'm still quite tired.     

[tbarrett2533]

Thanks, everyone     

Thanks, Monrein, for the explanation.......I'm glad to hear it's treatable.     

How come you have fistulas in both arms, Rerun?

Any of you have any experiences of when you got a fistula it reduced your Dialysis time lower than 4 hours?  My  nurse said today "maybe" this might for me, they can increase my pump volume from 400 to 450 if all runs well and it MIGHT get me off the machine a few minutes sooner than 4 hours. It's a wait and see thing, depends on a lot of things.......just curious to know your experiences here...

When I was doing in-center I was doing 3.5 hours and my labs were always so good and my clearance rates were always amazing my weight was low (that is what my neph base my time on) he wanted to put my time down to 3 hours, I told him NO!!!   longer time, means a better treatment..... so just a thought I say if you can do PD........ Do it and get right away from hemo all together, but this is just my thought!!
in MY opionion there is no place like home when it comes to dialysis!!!!
plus PD is way more gentle on the body than hemo is!!!!!! but this is just my opinion!!!

[Cordelia]

  tbarreett

My clearances are great even with a catheter, but I'm still tired, maybe it's just the kidney disease itself, I'm guessing. My labs have been  great for the last few months.

I have nothing against PD for those who can/want to......I think its great for those who can but I prefer to do in-center, I just live a 10 min walk (2 min drive) from my unit.... I just don't have the space or the room in my house for home hemo, nor the support.        

[Riki]

I have steal syndrome as well.  The only thing we've ever really done is lower the pump speed.  I generally run between 350 and 380, and never ever ever ever more than 400.  My hand gets cold during treatment, and if the pump speed is too high, it goes to sleep.

Cordelia, if I remember right, clearances tend to be a little better, and you generally feel better with a fistula, because you have no recirculation like you do with a line.  With recirculation, the same blood is getting cleaned over and over again, and dirty blood is staying in your system.  This can make you feel a little crappy, even if it seems like you're getting good dialysis.  With a fistula, if you have the needles far enough apart (and in my experience, they don't need to be that far apart) there won't be any recirculation, and your blood is getting cleaned better, which makes you feel better.

[tbarrett2533]

Riki
try the heat!!!
this helped me alot.... mine would start with cold, then go numb then pain like you would not blve!!

I thank god and the creator of CAPD everyday!!!

I am hoping my membrane holds up until I can get a transplant!!!
because I do not EVER want to go back to Hemo!!!

[Riki]

I would go back to PD in a heartbeat if I could.  Unfortunately, peritonitis made that impossible.

One of my goals in life (it's on my bucket list for sure) is to shake the hand of a man named Dean Kamen.  He is an inventor of many great things, one of them being the Baxter Home Choice dialysis machine.  I used that machine for nearly 5 years.  I was able to travel, which is something I could not do on PD as a kid.  The machine then was just too big.

[sullidog]

I use to have a cold hand until they did a fistulagram and opened up a blockage which took care of it.

[Cordelia]

So the pump speed can make all the difference then?

[fearless]

I'd say try to get some info about the surgeons available to  you.  A careful and skilled surgeon will minimize the risk for nerve damage.  That said, you are re-routing some major vessels, so the nerves which are attached will have to re-adjust.  I had numbness for several weeks after my fistula surgery.  It has pretty much disappeared, except a tiny bit different sensation on one area of skin on that hand.
Now if I can just get the nurses to quit f***ing up the vein!  Sorry - SO FRUSTRATING to try to use the fistula twice, and be infiltrated twice.  And this second one is quite painful indeed....  :-(