Calling all Fistula People

[big777bill]

  I had a fistula put in on Thursday 11-17-11 and so far so good. I haven't started dialysis yet. The Dr wanted the fistula to get plenty of time to mature before it's needed. I hope don't ever have to use it but that's wishful thinking..

[Whamo]

I get my fistula tomorrow.  I like my surgeon.  She seems very capable.  The anesthesia charge nurse is a good friend of my wife's, so I feel like I'm in good hands.  It really helps to be related to someone at your hospital.  They treat you like family instead of cattle.

[Cordelia]

I get my fistula tomorrow.  I like my surgeon.  She seems very capable.  The anesthesia charge nurse is a good friend of my wife's, so I feel like I'm in good hands.  It really helps to be related to someone at your hospital.  They treat you like family instead of cattle.

That can make all the difference, good luck!

I get my fistula next monday morning-bright and early--8 am.

[mcclane]

Sometimes i get a shooting pain in my left arm, where my fistula is.  I don't know if it is directly related to the fistula or repeated pokes with the needle.  I also notice my left arm (especially my hand) does get cold though.

[CebuShan]

I go in on 7 Dec to get my new fistula. I'm happy to be abandoning my old one!

[Cordelia]

What happened that you need a new one?  Did it stop working?

[CebuShan]

My current one didn't exactly stop working. It's just temperamental. Sometimes it works, sometimes not. It developed in a bad spot and they keep hitting a nerve. So sometimes even if it works, it is too painful to continue. When this one was put in, they didn't in in the wrist, Instead, the surgeon went in by the elbow. So I had two fistulas develop. I will be getting a catheter for about 3 weeks to allow the "new" fistula to develop a bit more and they plan on undoing the old one in my forearm and bringing my new one in my upper arm to the surface and (hopefully!) to a better position. Apparently it is pretty major surgery for out patient because they want a cardIologist to see me on Nov. 29. Wish me luck!

[Whamo]

My fistula operation was harder than I expected.  They put my whole left arm and shoulder into a numb state.  They told me it would address the pain, and that I wouldn't have to go under.  I wound up going under anyways, waking up to pain, and having my left arm limp, dead, for 8 hours.  The worst part is that an intern doctor got stuck with a needle with my Hep C blood in it.  In a month I have go under again for an even bigger cut.  I went into the hospital at 10:30AM and left at 7:30PM. 

[Cordelia]

OMG, Cebushan and Whamo, that's what I'm so afraid of-what if things don't go smoothly, etc, etc.  I swear I"m the biggest baby and biggest worrier going! LOL  I don't have good luck when it comes to surgeries so I'm so leery about mine this coming week on Monday. Good luck, Cebushan!

Everybody keeps telling me, like family and my nurses say,  Oh, you'll be fine, don't worry about it and I just don't have a warm fuzzy about this, I'm so scared yet.....I KNOW I have to do it. I have no choice.  *sigh
The "unknown" scares me so bad....everybody's story is different on how they reacted to the surgery and the fistula......I couldn't possibly be so lucky. I just never have luck.       

If I come out of it and breeze/sail through this, it'll be a !@#$ first! LOL!

Whamo, you mentioned your doctor got stuck with one of your needles, accidently? Does that mean he has hep C now?

As far as freezing is concerned, yup that would be me too, having that much freezing that it stays for a long time  because when I had my 2 c-sections, for the one with my twins, they put TOO much freezing in me and I couldn't even lift my arms to wrap my arms around my babies when I first saw them while on the OR table.       
I couldn't even more my arms, I was so paralyzed with freezing!       

[rsudock]

I have had the same fistula since I was a kid and I am going to be 28 years old! I used it the first time after 10 or so years and at first it was hard to stick because I didn't know how the needles were suppose to feel in the fistula. After about 3 months I could feel when the needles weren't inserted correctly. My hand only goes numb if I sleep on my fistula arm and sometimes during treatment. Post transplant now and the fistula is still whirling away!

xo,
R

[Cordelia]

I have had the same fistula since I was a kid and I am going to be 28 years old! I used it the first time after 10 or so years and at first it was hard to stick because I didn't know how the needles were suppose to feel in the fistula. After about 3 months I could feel when the needles weren't inserted correctly. My hand only goes numb if I sleep on my fistula arm and sometimes during treatment. Post transplant now and the fistula is still whirling away!

xo,
R

Do you ever want it reversed now that you've had a transplant ......or is it best to leave it in case a transplant fails and one has to go back on D? I've often wondered that.

[rsudock]

Sometimes I think it would be great to have it reversed but I would never dare, just in case the transplant will fail. (or should I say when the transplant fails) I wouldn't want to go under the knife again to have a new fistula put in if I can help it. Less surgery the better....this fistula has been working for 10+ years...I am hoping it stays with me until the end.

xo,
R

[Cordelia]

Does the buzzing/thrill of it ever bother you, esp when you're trying to sleep?  I'm concerned I won't be ever able to sleep on my left side ever again once I have mine put in my left arm next week.

I know of one person that told me the sound/sensation of the thrill kept them awake at night, and that concerns me. I need my sleep. I'm going to be pissed              and livid if my fistula interferes with my sleep!!!

[rsudock]

Nope the thrill never has bothered me, but I do avoid sleeping on my left side. My fistula is in my upper left arm. I posted a picture in one of Dom's posts awhile ago. I may lay on my left side for a few minutes, but never for an extended amount of time!

xo,
R

[Cordelia]

That's what worries me .......I hope at some point , I can. I would severely miss laying on my left side since my right side is an issue with a bum shoulder!

[CebuShan]

The thrill has never bothered me. You can feel it very strong. Maybe because I always describe it as a cat's purr & that is always comforting to me!   

[Cordelia]

     cat purr

[Mr. B 123]

Fistula in upper arm and I have numbness in forearm, Like I had a shot of novacane in my arm.  Doctor said this sometimes happens when they make the connection and go diging around in your arm, but may go away with time but now 5 months latter it is still the same.  Not bad  just feels funny.  Time will tell.

[Cordelia]

Another question:  Assuming that once it's healed and running well for D for a few treatments......how soon after the central catheter is removed, how long is it until I can go swimming?

[fearless]

I don't know that anyone can tell you how long it will be before you can go swimming.  Based on my experience, we really need to cultivate patience.  There are unforeseen things that always seem to come up along the way.  You are taking each needed step, and you really can't "hurry" these things - patience is a virtue, and I feel confident you will be swimming again soon, but how soon?  Just as soon as possible!!! 

[Cordelia]

Good things come to people who are patient               

[MooseMom]

My surgeon had wanted to just use a "shoulder block", but by the time I actually got to surgery, I was a real basket case.  When the anesthesiologist said that the surgeon still wanted to use the block, I said that this was the worst day of my life and that I didn't want to remember a single thing about it, so knock me out totally!  And they did.  When I awoke, it was all done and dusted, and I was left with a completely numb arm and shoulder, but that sensation went away fairly quickly.

I am one of those people who do not find the fistula sounds to be comforting like a cat's purr.  My scar is right below my left elbow, and the access will be just above, so my whole upper arm and shoulder is involved in this little venture.  I also have a loud bruit/thrill in my neck which bugs the hell out of me.  I can hear the bruit coming through the phone when I am holding it up to my left ear with my left hand.  And yes, at night I can hear it if I lie on my left side, and it does bother me.  So I got one of those white noise machines, and that helps.  Maybe one day I'll come to love my noisy arm, but right now, 18 months out, it still irritates me.  But I am still glad I have it because it always scared me that I might have to start D on an emergency basis and wouldn't be ready, but now I don't have to worry about that any more.

I will have to admit that for the first year, my fistula really worried me because I'd get all sorts of creepy, lightning type sensations down my arm, and sometimes my fistula would just ache.  There were two times when I demanded to be seen by the surgeon so that he could take a look at it, and he ended up thinking I was just crazy.  He keeps telling me that it is just wonderfully marvelous.  This past April 1st, I went to the ER because it was hurting...just aching...like it was blocked or something, and the doc reassured me that it was OK.  I had never had a fistula before, so I didn't know what was normal and what was not, but after 18 months now, no one has ever been concerned about it, so I am not going to be, either.

Any surgery is risky, and I would never sit here and tell you that you will be just fine.  But I have trouble with anesthesia and other whatnot, and if I did OK, I think there will be a good chance you will be, too.  In the grand scheme of things, this is a common procedure for a competent vascular surgeon.

I'll be very eager to hear back from you once it's all over.   

[mcclane]

The thrill has never bothered me. You can feel it very strong. Maybe because I always describe it as a cat's purr & that is always comforting to me!   

me too.  when I don't hear/feel the purr, then I get worried.  But having the purr is reassuring, at least i know that no surgery or no hospital visits are req'd as it is 'purring' like a cat 

[Cordelia]

My surgeon had wanted to just use a "shoulder block", but by the time I actually got to surgery, I was a real basket case.  When the anesthesiologist said that the surgeon still wanted to use the block, I said that this was the worst day of my life and that I didn't want to remember a single thing about it, so knock me out totally!  And they did.  When I awoke, it was all done and dusted, and I was left with a completely numb arm and shoulder, but that sensation went away fairly quickly.

I am one of those people who do not find the fistula sounds to be comforting like a cat's purr.  My scar is right below my left elbow, and the access will be just above, so my whole upper arm and shoulder is involved in this little venture.  I also have a loud bruit/thrill in my neck which bugs the hell out of me.  I can hear the bruit coming through the phone when I am holding it up to my left ear with my left hand.  And yes, at night I can hear it if I lie on my left side, and it does bother me.  So I got one of those white noise machines, and that helps.  Maybe one day I'll come to love my noisy arm, but right now, 18 months out, it still irritates me.  But I am still glad I have it because it always scared me that I might have to start D on an emergency basis and wouldn't be ready, but now I don't have to worry about that any more.

I will have to admit that for the first year, my fistula really worried me because I'd get all sorts of creepy, lightning type sensations down my arm, and sometimes my fistula would just ache.  There were two times when I demanded to be seen by the surgeon so that he could take a look at it, and he ended up thinking I was just crazy.  He keeps telling me that it is just wonderfully marvelous.  This past April 1st, I went to the ER because it was hurting...just aching...like it was blocked or something, and the doc reassured me that it was OK.  I had never had a fistula before, so I didn't know what was normal and what was not, but after 18 months now, no one has ever been concerned about it, so I am not going to be, either.

Any surgery is risky, and I would never sit here and tell you that you will be just fine.  But I have trouble with anesthesia and other whatnot, and if I did OK, I think there will be a good chance you will be, too.  In the grand scheme of things, this is a common procedure for a competent vascular surgeon.

I'll be very eager to hear back from you once it's all over.   

Oh God, MM, I'm so sorry you haven't had a good experience          

To be 150 per cent honest here when I say here, I am worried that I don't have a good experience, is an honest thing to say.    I worry about everything, will I sleep, undisturbed, will it cause me a lot of pain/annoyance/ problems in the long run,  will it cause nerve damage......I think of every possible scenario, hoping to God, it doesn't happen to me.     And lastly, is it only going to be a little 'section' of my arm involved.....i.e. my wrist, which is where he's planning to put it, or will it have to go up 'higher' and will it affect my shoulder too.   I have neck issues as I've had whiplash back in '99 and I hope my neck doesn't get affected either!!!!!!!

That can be really frustrating when you think something is wrong and a surgeon/doctor can't find anything.

I pray       and hope for you that feeling/sensation goes away for you!!       

I'll let you all know how it went     

[ToddB0130]

Cordelia --- Honestly,  I had mine done nearly six weeks ago and it's made absolutely no difference in my life at all.  Not in the way that I sleep, not any new pain,  the thrill isn't all that bothersome (I really only feel it when I am 'checking' for the 'thrill'  (or when I show it to other people to 'freak them out') ............Anywhooo,  maybe that's just me.   For now,  there's no impact at all ............until  I start having to use it !!!!