I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Epoman on November 17, 2006, 02:56:32 PM

Title: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on November 17, 2006, 02:56:32 PM
Does your fistula flatten when you raise your arm above your head? I have a pretty good size fistula and when I raise my arm above my head it flattens. Does your "lower arm" fistula do that too? I am thinking it's not a problem and it's just gravity at work. It has always done that but I was just thinking I have not heard anyone else talk about it.

- Epoman
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Zach on November 17, 2006, 03:58:07 PM
Does your fistula flatten when you raise your arm above your head?
- Epoman

Same here.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: BigSky on November 17, 2006, 04:24:31 PM
Most of it does.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on November 17, 2006, 04:59:16 PM
Really? Thanks guys, I never asked anyone when I was in-center. I feel so much better, it's weird when ever I showed the techs or nurses that my fistula did that, they just looked shocked and said they never seen that before.  ???
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: BigSky on November 17, 2006, 07:14:19 PM
At the point of the  anastomosis mine also does a fluttering motion (kinda like a muscle spasm) when my arm is over my head.   Does your guys do that also?
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on November 17, 2006, 08:36:46 PM
At the point of the  anastomosis mine also does a fluttering motion (kinda like a muscle spasm) when my arm is over my head.   Does your guys do that also?

Yes actually I get that too sometimes. It looks weird when it happens.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Zach on November 17, 2006, 08:41:59 PM
The women love it ... they think I'm bionic!      8)
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angela515 on November 17, 2006, 11:44:35 PM
In 1999, when I first started dialysis, they took me into surgery and when I woke up I had a perma-cath in my chest and something in my left forearm. I don't remember what they put in, it's been so long now.. I don't know if it was a graft or a fistula but i believe it was a graft. Anyways, whatever it was it was the type that grows into your skin, so it cannot ever be removed as it is basically a part of my skin now. It is flat and when you look at my arm closely you can see the outline of it going from my elbow area to my wrist. They had to take a little part of it out by my wrist many years ago because that part was starting to push up through my skin and was about ready to breakthrough my skin.. that would not have been pretty. It only worked for a few months and it gave up, my viens are so small and scarred from hundreds of IV's and daily blood draws for years. So I used a perma-cath until my transplant from my mom 7 months after starting dialysis that year.

Then in 2004 when my transplant failed and I started hemo again, they started out with a perma-cath and they then put in an access in my right forearm. Again, I dont know what type of access, but i believe a graft as my viens are too small and crappy for a fistula..it went from my elbow down to the middle of my forearm. This access however is not a part of my skin and its raised up, meaning when you lok at my arm you know there is something in it. This access didnt work very long, only a month. The dr then put another access in the same arm (right arm) this time from my elbow going the othr way up my arm a little. This access never worked from the time of insertion. Then they put another access on my left arm, going from my elbow and going up towards my armpit. This access was never used because it got infected a week or 2 after it was put in, so they took it out.

I used a few caths in my chest, switching sides periodically due to gtting infected or falling out. Eventually the dr said they were gonna try to put my next access in my thigh... I said I didn't want one there and I then found out about PD and switched to that.

If I ever have to go back on hemo, I guess I would try an access in my thigh since I dont like the perma-caths.

I was wondering... I don't like having the raised area where my access is in my right arm, would a docor take that out? Like would the insurance cover that? Or would there ave to be a medical reason or emergency to get it out?
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 17, 2006, 11:52:53 PM
Does your fistula flatten when you raise your arm above your head? I have a pretty good size fistula and when I raise my arm above my head it flattens. Does your "lower arm" fistula do that too? I am thinking it's not a problem and it's just gravity at work. It has always done that but I was just thinking I have not heard anyone else talk about it.

- Epoman
Yes mine does and mine is lower arm!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: jbeany on November 18, 2006, 06:28:45 PM
Okay, my turn . .

Does your fistula or graft throb when you cough or sneeze? 

Mine is in my upper arm, and if I'm holding it at the wrong angle when I start hacking or sneezing, it feels like the pressure on it is going to make it pop.  It doesn't hurt, just feels like there's too much fluid trying to go through at once.  I have to hold it back down by my side until I stop.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: kitkatz on November 18, 2006, 06:42:10 PM
My graft will ache up under my arm occasionally. It feels weird.  I figure it is a nerve getting in the way up there.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 18, 2006, 11:10:43 PM
My fistula only feels like that when I have the needles in. Other than that it is fine. But I have learned to always be aware and if you have any worries about how it feels then talk to the surgeon (the Neph will be clueless so don't ask him). One lady had numbness and said it felt odd but didn't give enough detail or push for an answer. She ended up getting her fingers amputated!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Joe Paul on November 19, 2006, 12:56:52 AM
My fistula doesn't flatten when I raise my arm, but the "thrill" goes crazy. When I sleep and put my arm above my head, its like an alarm clock, the buzz wakes me right up.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on November 19, 2006, 01:40:25 AM
My fistula doesn't flatten when I raise my arm, but the "thrill" goes crazy. When I sleep and put my arm above my head, its like an alarm clock, the buzz wakes me right up.

Really? Do you have high blood pressure, and what is your average pressure?
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: RichardMEL on November 19, 2006, 04:17:31 AM
oh wow that is freaky! I never noticed that until I tried it just now.. yep flattens right away ...how weird... and the thrill goes weird too.. doesn't feel right till I put it back down and it goes back to normal. A bit worrying really since they always told me if you find that thrill has stopped you MUST go to ER right away !

oh god speaking of at night and alarm clocks... if I am in bed and put my arm in the wrong place.. god it can so piss me off it's so loud and distracting! lol
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Rerun on November 19, 2006, 04:23:16 AM
Lately I feel the buzz up under my arm pit.  Drives me nuts!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: AlasdairUK on November 19, 2006, 06:30:04 AM
Lately I feel the buzz up under my arm pit. Drives me nuts!

When I try sleep, depending on where I put my arm I can feel it under my arm pit and even on to my chest occasionally
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Joe Paul on November 19, 2006, 08:34:59 AM
My fistula doesn't flatten when I raise my arm, but the "thrill" goes crazy. When I sleep and put my arm above my head, its like an alarm clock, the buzz wakes me right up.

Really? Do you have high blood pressure, and what is your average pressure?
Not really too high (considering) average is 170/90.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 19, 2006, 02:23:53 PM
If my arm is up against the pillow I can hear it all the way through the pillow :(
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: jbeany on November 19, 2006, 06:19:16 PM
I can hear mine thru the pillow too.  I'm my own white noise machine now.  After having the first one  in my lower arm stop and not be able to be fixed, I find the continuing noise kind of reassuring.

My cat thinks I purr now.  She likes to put her head on that arm and purr back at me.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 19, 2006, 06:20:54 PM
My cat thinks I purr now.  She likes to put her head on that arm and purr back at me.
Awww that is so unbelievably cute!!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: RichardMEL on November 19, 2006, 07:10:03 PM
My cat likes to do that too. I am certain she thinks it is like her "mother" cat purring at her. She puts her little head down and snuggles right against my fistula and goes to sleep all happy and contented... of course that is right when I want to move or get up :( Guess what happens? Yes, I stay there for longer than I should because I am a good slave and don't wish to distrub the mistress! :)
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: jbeany on November 19, 2006, 07:11:35 PM
My cat likes to do that too. I am certain she thinks it is like her "mother" cat purring at her. She puts her little head down and snuggles right against my fistula and goes to sleep all happy and contented... of course that is right when I want to move or get up :( Guess what happens? Yes, I stay there for longer than I should because I am a good slave and don't wish to distrub the mistress! :)

Me too - guess we all know who's really in charge in our house!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 19, 2006, 10:51:13 PM
Is that why my cat now loves to sleep with me? I just thought she was calming down :P
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: kitkatz on November 19, 2006, 10:55:54 PM
Your cat is just lulling you into a false state of contentment.  You do know they are planning to take over the world one person at a time, right??
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: RichardMEL on November 20, 2006, 12:09:58 AM
... and doing a good job of it if we're any indication :) :) :) :) :)

Still I wouldn't have it any other way. I love my cat. she's my best mate and she somehow knows when I'm feeling a bit flat or tired and even when I come in and crash on the bed rather than give her her food at dinner time she comes and sits with me and doesn't yell or anything.... and people say cats are selfish and only interested in you when they want something (eg: food). I don't believe it for a second. When you have a bond with a pet (and I would guess it is similar with dogs, but I am not a dog person myself) over a period of time, they can tell (just as you can with them in subtle ways)... and it's not just about "feed me" "pat me" etc. I know she is happy to see me when I come home. I also know she sits by the door for some time prior to me coming home (the carpet is always warm from where she has been sitting... so adorable!).

Sorry this has gone OT... but I am a bit of a cat lover if you hadn't worked that out :)

to get back on topic... I put my arm over my head earlier today at work and freaked myself out again! That is so cool!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on November 20, 2006, 12:26:08 AM
Does your fistula flatten when you raise your arm above your head?
Ya I didn't know mine did that til I tried it after reading this :P
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: kitkatz on November 20, 2006, 01:48:35 PM
I just a vision of everyone lifting their arms over their heads at dialysis before being put on and freaking out the entire staff!
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Fighter on November 20, 2006, 03:08:25 PM
My fistula is flat all the time.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: susie q on November 20, 2006, 04:25:02 PM
My fistula is flat all the time.
Me too...  8)
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on December 28, 2006, 05:09:48 PM
My fistula is flat all the time.

Wait a minute, I just saw this what do you mean your fistula is "flat" all the time? How old is your fistula?
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Jill D. on December 28, 2006, 07:27:03 PM
If my arm is up against the pillow I can hear it all the way through the pillow :(

Me too...it's like the pillow amplifies the pulse sound...very annoying, it keeps me from falling asleep! Sometimes when I am at work and am going through paperwork, if the papers are laying on my wrist I can hear my fistula as it amplifies through the paper! :o
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: gizmar on December 30, 2006, 06:45:09 PM
My niece and nephew think I'm bionic - they love to feel the buzz of the fistula.  I don't seem to get many of the same symptoms as people here - just incredible itching - some days I could just rip my arm to shreds.  At first I thought I had an allergy to metal and then found out I have a sensitivity to the fibres in the dialyzer - now we just do a double flush before dialysis and it does help to take away some of the itching.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on December 30, 2006, 06:52:53 PM
My niece and nephew think I'm bionic - they love to feel the buzz of the fistula.  I don't seem to get many of the same symptoms as people here - just incredible itching - some days I could just rip my arm to shreds.  At first I thought I had an allergy to metal and then found out I have a sensitivity to the fibres in the dialyzer - now we just do a double flush before dialysis and it does help to take away some of the itching.

Tell me about it, my fistula is ALWAYS itching. But I am not sure if it is just the alcohol I use to clean my arm or my dry skin, but I scratch so bad that I leave marks. It really gets on my nerves.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: gizmar on January 01, 2007, 11:32:00 AM
Epoman, the nurses have told me that alot of people are sensitive to the alcohol wipes.  They've also suggested I use cream on my arm to keep it moist.  I don't think anyone other than a dialysis patient can really appreciate how really insane the itching makes you.  I feel your pain brothah!!!

Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: del on January 01, 2007, 08:08:40 PM
Hubby has a fistula like a garden hose.  It goes from his wrist up past his elbow.  He likes to gross people out by lifting his arm and making it go flat.  His buddy gets freaked out and will almost faint on the site of blood or talk of it.  He likes to do it to him.  Mean!!  He has trouble with itching too.  Has to use cream. Dr gave him hydrocotisone (spelling ) cream because tape was making his arm sore and red.  Finds it good for itching too.  I use same type for excema.  When our nephew was small he used to say there was a butterfly in Uncle Walt's arm.  He has a loud buzz.  I am use to it now but when I'd wake in the morning I would hear it under my head and think there was a big truck outside the house..  Most of the nurses in center trained on his arm.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: strateup on January 01, 2007, 09:10:43 PM
My fistula, in my upper right arm, also flattens out when I raise my arm.  Does anyone else have a problem with their fistula arm becoming fatigued easily?  I notice this especially when I am shaving.  I can also hear mine through the pillow and sometimes it itches like crazy.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: BigSky on January 03, 2007, 07:54:46 AM
Ya my fistula arm gets fatigued pretty easy.  Especially when lifting.  The latic acid builds up and burns right where the fistula is far more than anywhere else in the arm.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: jollor on January 21, 2007, 05:32:37 PM
I love that your cat thinks your arm is purring that's hilarious. It surprised me one night when I was reading and started hearing this whoosh whoosh noise. It turned out the sound of my fistula was being amplified by the book in my hand. Very weird.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Panda_9 on January 26, 2007, 03:36:09 AM
I have had to change my sleeping positing since getting a fistula. It is so annoying. I often wake up at night in the wrong position (bending fistula arm), and my arm is completely numb. It can get noisy too, especially if I have fluid on. I just change positions, otherwise I cant sleep.

When its cold my cat loves mine as well, only I dont really like him laying on it, germ factor and pressure. He puts his head right on the join and if you try to move his head he just moves it back lol
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: silverhead on February 05, 2007, 11:34:23 AM
Just remember that thousands of years ago, cats were worshiped as gods. Cats have never forgotten this.........
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: shay_pcb on February 07, 2007, 07:25:04 PM
I have 2 clotted grafts/fistulas in my arm; one upper and one lower. I don't notice the upper one, but my lower one is flat and you can see it perfectly anyway I hold my arm. I know it's bc it's clotted; I just thought that everyone should know what a clotted one looks like! lol
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: BigSteve on February 08, 2007, 10:27:37 AM
You guys are freeking me out. The fistula flattens, it purrs. I don't know. I have my preliminary appointment
with the surgeon on March 5th. Creatinine getting higher and it's time for a fistula.
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on February 08, 2007, 11:42:00 AM
Ya my fistula arm gets fatigued pretty easy.  Especially when lifting.  The latic acid builds up and burns right where the fistula is far more than anywhere else in the arm.
Really? I would love to see a write up on that if there is any, so I can show my nurse ;)
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: Epoman on February 11, 2007, 04:10:53 AM
You guys are freeking me out. The fistula flattens, it purrs. I don't know. I have my preliminary appointment
with the surgeon on March 5th. Creatinine getting higher and it's time for a fistula.

Well BigSteve this is "A PLACE TO GET THE TRUTH" good or bad brother. But at least you will be informed. Good luck on your surgery and be sure to have them do vein mapping so they know where to find the good veins for a fistula. Vein mapping is not always done.

- Epoman
Owner/Admin
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on February 11, 2007, 05:48:51 AM
You guys are freeking me out. The fistula flattens, it purrs. I don't know. I have my preliminary appointment
with the surgeon on March 5th. Creatinine getting higher and it's time for a fistula.

Well BigSteve this is "A PLACE TO GET THE TRUTH" good or bad brother. But at least you will be informed. Good luck on your surgery and be sure to have them do vein mapping so they know where to find the good veins for a fistula. Vein mapping is not always done.

- Epoman
Owner/Admin
That's right. It isn't always done. They didn't do it for me. But I really wish they had so maybe the first one would not have failed before it even got to be used! If you can push for one to be done then do it but usually they don't listen. Of course I am in a country where everything is paid for. In the States I would think they would do what ever you want if you insist as they are getting paid by you or your insurance or Medicare or Medicaid. So it is worth pushing.

And it might sound intimidating hearing that our fistulas make noise and flatten when we hold our arms up, but that is just gravity because it is bigger and the noise is something you want. It tells you that it is working. It is less intimidating as time goes on and you learn more and more. I tried to look at other peoples before I got mine but I didn't want to intrude. So now I am glad to show others just so they are less fearful. I think it is important.

I had tried doing a search on the net but I didn't find what I was looking for because I didn't know to search for AV Fistula. I searched for just fistula and ended up in Africa about the wrong side of the body :(
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: BigSteve on February 11, 2007, 10:34:36 AM
Thanks for the input. My new nephologist who referred me to the surgeon said
that they did vein mapping. Any other things I should be looking for?
Title: Re: Fistula "Owners" ;) Does your fistula.......Say what?........
Post by: angieskidney on February 11, 2007, 10:45:35 AM
Thanks for the input. My new nephologist who referred me to the surgeon said
that they did vein mapping. Any other things I should be looking for?
Also I found that since I have small viens that if I got dried out at dialysis that was before the surgery then it was harder for the surgeon to work on making my fistula. It is best to go off 1/2 kg heavy in this case if you got small veins.