Introduction

[Dougndan]

Hi,
My name is Doug, I have had ESRD for about 3 years, I have been through one unsuccessful transplant and am now on the "list" for another kidney. I was on peritoneal for about 4 months and had problems, I am on hemo now (with a chest cathetor), I am scheduled to get a fistula in a few days, I am really nervous about what this will do to my arm, would love some feedback (good and bad). Thanks!!!

[Epoman]

Hi,
My name is Doug, I have had ESRD for about 3 years, I have been through one unsuccessful transplant and am now on the "list" for another kidney. I was on peritoneal for about 4 months and had problems, I am on hemo now (with a chest cathetor), I am scheduled to get a fistula in a few days, I am really nervous about what this will do to my arm, would love some feedback (good and bad). Thanks!!!

Hey Doug welcome to the board. I hope we can help you with any question you may have and also be an "outlet" to let off some steam.

About your question about your arm, well it's going to hurt like hell after the surgery and the cold weather is going to make it worse. But the pain will go away eventually. Don't forget to exercise that arm to develop that fistula, the bigger it is the easier and faster they can use it. Squeeze that ball every chance you get. Some fistulas take literally months to develop. I would also suggest consider using the "Buttonhole" technique and sticking your OWN needles. Also do not let them try to use your fistula too soon, wait till it is clearly visable. But seriously I suggest you stick your own needles. Read my FAQ at this link: http://ihatedialysis.com/forum/index.php?topic=12.0 look for the info on "Buttonhole" and "Sticking your own needles".

Again welcome to the board. If you have any other question please make a new post.

- Epoman

[Rerun]

Welcome Doug.  You are our 100th member.      I wish I could say that "you won a car" but I can't do that!   

My arm is UGLY~  Sorry!!

[Black]

Hi,
My name is Doug, I have had ESRD for about 3 years, I have been through one unsuccessful transplant and am now on the "list" for another kidney. I was on peritoneal for about 4 months and had problems, I am on hemo now (with a chest cathetor), I am scheduled to get a fistula in a few days, I am really nervous about what this will do to my arm, would love some feedback (good and bad). Thanks!!!

Welcome, Doug.  Check out the thread "Fistula Matters".

[Dougndan]

Thanks for the feedback so far....My chest cathetor is working just fine,what if I refused a fistula, anyone out there with a chest cathetor for a long period of time??? Also, those of you with fistulas, does it interfere with using your arm and hand? I love to golf, fish and play the guitar.I try not to let dialysis run my life but more and more it seems to want to interfere with things. So you can see why I'm so hesitant to have a messed up arm.. ..Thanks again, Doug

[hyperlite]

my fistula is in my left arm, at the wrist. I was pretty scared of the operation (mainly the thought of a huge garden hose-like vein in my arm), but after the operation was over it wasn't too bad. The operation itself wasnt so great...it was awful but not great. I wasnt put to sleep so i could kind of "feel" them cutting my wrist open and fiddling around in there. But afterwards it wasnt bad at all. I was back at school the next day. Now theres not much I cant do that I did before I got the fistula. I play guitar, hockey, soccer, squash...all sorts of sports and stuff and I've never had a problem...and I've had my fistula for a year now and its still not very noticable, but works amazingly...

[Dougndan]

Hyperlite,
Thanks so much for your reply,  it is really good to here some not so bad news, maybe it won't be as bad as I think....Thanks again!!!

[Epoman]

Hyperlite,
Thanks so much for your reply,  it is really good to here some not so bad news, maybe it won't be as bad as I think....Thanks again!!!

Well I have full use of my arm and I do everything I want to. Sometimes I will hit it and it will hurt like hell. But the only complaint I have is sometimes I get nerve pains. Oh and also it gets old after a while they way people look at my arm when talking to me. I know they are just curious but it still gets annoying. But I have had mine for almost 13 years and it still works great, I get great bloodflows and I say the bigger it gets the better it will work. It may be ugly but it works awesome.

If I were you I'd request an UPPER arm Fistula. They did not offer that when I first started but they do now. That way your shirt will cover it up. Remember fistulas are the best type of access they can literally last decades.

- Epoman

[Rerun]

Yes, mine is in my upper arm and I wear shirts where you can't see it.  I'd rather have a "big ugly" fistula that WORKS than a tiny one that you can't see and they can't use.  Take the bad with the good.     I'm not supposed to put a bag over that shoulder or restrict blood flow in any way.  Don't sleep on that arm either.

[Black]

... If I were you I'd request an UPPER arm Fistula. They did not offer that when I first started but they do now. That way your shirt will cover it up. Remember fistulas are the best type of access they can literally last decades.

- Epoman

Since I'm not a dialysis patient I can't say from experience and I don't recall the reasons, but I read that the lower arm, radial-cephalic/Cimino fistula is known as the "Gold Standard".  Also, one of the guys who has been on dialysis for over 20 years claimed that buttonholes and self-cannulation are easier in the lower nondominant arm.

IMO, the most important thing is to make sure the surgeon is a VASCULAR surgeon who has done many fistulas.

[anja]

Doug,
   You asked if anyone has had a chest cath. for a very long time and I thought I would let you know that my father has had one for the 5 years he has been on dialysis.  He did have to have it changed twice- from one side to the other, but still working great.  He was a bit stubborn, because he was holding out for the" buttonhole technique" to  be performed at his center hospital.   A couple people now have them and Dad has sort of backed down about it, says he is satisfied with the chest cath~ no needling...  But during all this time they have tried to talk him into getting a graft or fistula and he still refused.  It is your right.  My Nephrologist is a hemo.  guy  but after being on this board and learning what I could, I decided to do peritoneal and he had to go along with it.  Good luck in whichever way you decide to go!       Anja

[Epoman]

... If I were you I'd request an UPPER arm Fistula. They did not offer that when I first started but they do now. That way your shirt will cover it up. Remember fistulas are the best type of access they can literally last decades.

- Epoman

Since I'm not a dialysis patient I can't say from experience and I don't recall the reasons, but I read that the lower arm, radial-cephalic/Cimino fistula is known as the "Gold Standard".  Also, one of the guys who has been on dialysis for over 20 years claimed that buttonholes and self-cannulation are easier in the lower nondominant arm.

IMO, the most important thing is to make sure the surgeon is a VASCULAR surgeon who has done many fistulas.

Well all they do is AV "Cimino" Fistulas. The difference is Radial Cephalic means lower arm and Brachial Cephalic means upper arm. The location of the fistula is not an issue when it comes to buttonholes. It is true however it's easier to self-canulate in a "Lower Arm" fistula but many people self canulate in their upper arm too. Also "Cimino" is the name of the physician who originally described the technique in 1966 which involved joining a large vein directly to an artery. And the term "gold standard" well that term was created when ONLY the lower arm fistula and graft was available. The so called "Gold Standard" applies NOW to BOTH lower and upper fistulas.

- Epoman

[Sara]

Just want to say hi, and welcome. 

[Dougndan]

Well I received my fitsula yesterday, all went well. The doctor was very pleased with how it went and does not anticipate any trouble. Thanks again to everybody for your advice and information.
Doug

[Rerun]

You haven't taken off the bandage yet have you!!!   

[Naggy6]

I've had my fistula since 1989 and it is still working very well.

Yes I said 1989 that was not a typo, I have been on dialysis off and on since then. I do pretty much every thing I did before, how ever I would not suggest playing volley ball "ouch" that could hurt.

I put in my own needles, I have given the butten hole a try and it didn't seem to work out for me. I didn't try it though until I had been on dialysis for some time. So I don't know, it could be that my fistula was a little over used by the time I tried. I have done some reading up on it though and have been trying to avoid certain spots on my fistula so that I can give it another try.

I'm obviously on hemo, I'm currently an in center 3x per week for 3 hours but I plan to start daily home hemo that is why I'm interested in trying the button whole again. I wonder how all those sticks every day would affect my fistula.

I think I'm more excited than nervous about doing it at home. The bigest thing to me is I'm so excited that I will be able to have more fluid. I don't know how much more just yet but even if it's 8oz I would be thrilled.

[Dougndan]

Thankyou for the input, sounds like you definitely have had alot of experience. They say Doug's fistula is not ready yet, but it's only been 2 weeks. We got an exciting call from the hospital last week, there is a possible anonymous donor that looks like a good match for Doug. It is so awesome that there are people out there willing to donate an organ to someone they've never met. We should here this week if the crossmatch was good or not. So maybe he won't even need his fistula for now..Anyway, we're keeping our fingers crossed!!  Good luck with the home hemo, Doug's Dr. asked if he would be interested, but his center is so close to his work that it's pretty convenient for him to go there.  By the way, welcome to the board.
 

[fireguy]

Welcome to the site. Have had a graph in my arm for over 3 years . I still golf, fish , ect. I also work full time and I'm also a Vol firefighter. The only thing I'm carefull not to do is carry anything across the graph. Have had chest tube and would not choose it over needling.