Calling all Fistula People

[MooseMom]

Cordelia, I don't really think that my fistula surgery nor my experiences with it were/are anything out of the ordinary.  It's just that people had kept yammering on about how it was my lifeline and that it was so important and it was critical to take care of it, yadda yadda yadda.  And like you, I am convinced that I will be the one person out of a thousand for whom this damn thing won't work or some other stupid ass problem will crop up that no doctor has ever encountered before.   I was about to say that you have no idea how many times I've had someone say to me, "Oh, I've never seen THAT before," but I think you might, in fact, have had people say the same thing to you.  I think you get it.

I just had to have reassurance, that's all.  It was a whole new thing for me, and remember...I haven't had to use it yet, so I had no way of knowing if what I was feeling was normal.  I didn't know anyone with a fistula, so I had no one to ask.  I had to resort to expensive surgeon's/ER visits to get the reassurance I needed.  But now I feel more reassured, and since I've just gone through the pre-transplant testing again, and since I seem to be always seeing a doctor for something, my fistula is checked regularly, and no one has yelped, "OH MY GOD, I'VE NEVER SEEN THAT BEFORE!"   

The "thrill" didn't bother my at first because it was minimal, but as time went on, the thrill/bruit/purr became much more pronounced, but that's the whole point, right?  Also, my surgeon went ahead and "lifted" the vein and attached it to the underside of my skin.  This is good because it should make cannulation easier in that the vein should be easier to find, but it is also irritating because it makes the thrill easier to feel throughout my day to day life.  I am always aware of it.  Is that a good thing?  I dunno.  Some people say yes if they like the cat purry scenario, but I don't care for cats.

I can't say that I've had a "bad" experience.  I suspect that I've had a commonplace experience but with a hysterical, MooseMom-ish tint to it.  I had been waiting for the inevitable decline for years..waiting with a lot of anxiety...and when the day finally came that I had to have a fistula created, that was like crossing a psychological Rubicon for me.  It wasn't so much the fistula itself, rather, it was what it represented.  It really was the worst day of my life, and the reason I've posted about it is not to scare you but, rather, to show other people who are in the same boat as I am that if I can make it through, believe me, anyone can.

But you are in a psychologically different place than I was.  If I was that hysterical about having a fistula created, I think I would have had to have been permanently sedated if I'd had have to have a cath inserted. 

I don't know for sure, but if you have a fistula created in your wrist, I just can't imagine a scenario whereby there would be problems with your shoulder.  As I've said, mine is in the lower part of my upper arm, and while I can more clearly see the veins in my shoulder and neck, I don't detect any problems with the muscles.  I do find, however, if I've been lifting heavy things throughout the day, my fistula will ache (and I think this is what happened when I went to the ER).  So I'll take a couple of tylenol, and that seems to take care of it.

But it is amazing what you get used to.  The feeling I have in my arm still persists (which is a good thing!), but it doesn't register with me like it used to.  I do sleep on that arm (naughty MooseMom ), but I tell myself that since I'm not using it yet, it doesn't count.   But I can hear the blood flow through my pillow, and if it annoys me, I have to turn over for some peace and quiet.

I hope this helps some.  I understand your anxieties completely!   

[Cordelia]

Todd,            


                MM, I so very much get it.             I know my fears and concerns are very real to me, I  am so relieved that you and others understand me here.!!!!       

My surgeon said it will go in the wrist but if it doesn't 'look' promising on Mon morning, he said he'd go farther up the arm.  It scared me.

I like to hear people's experiences so I hear and can have a better understanding/knowledge of what can happen and what to expect.   

Oh my goodness, that cath going in me, MM, was so traumatic.    I wished I had been knocked out for that too, but they refused.    Nothing......is ever, ever easy for me.....and I don't have much luck when it comes to major life-altering events like this.    Going into a situation and I know to some this must sound crazy to some, but I always 'anticipate" or "expect" the worst-case scenario so that if I come out of it, sailing through, its easier for me to cope.    If I go through procedures thinking the mentallity, oh, it can't happen OR WON"T happen to me" and something bad does happen, then I wind up devastated.    I've always been that way. ..... a lot of times people think I'm thinking/talking negative when and it's perceived on my end so entirely differently when all I'm doing is trying to understand the situation better so I gain better knowledge myself.   I know you and others here are so very understanding, it means so much to me that you all do.       

I have a constant tingling, stabbing pain in my toes and feet . It dirves me nuts .....does it prevent me from getting to sleep? No. I don't "think" about it.     I totally understand what you mean about 'getting used to it' It's similar with my feet.

You and everyone else here  have helped so much  sharing your insight and experiences          Thanks so much for yours and everyone else's understanding also         

[MooseMom]

Are you my long-lost twin because I swear you sound like me..."Nothing is ever easy for me", and "I don't have much luck..."   

What you are describing is a perfectly valid coping mechanism, and I'll claim that, yes indeedy weedy, it IS perfectly valid because I do exactly the same thing.   I call it "getting sandbagged", that concept of being so completely caught off guard by bad news that you can physically feel the Earth turning on its axis.  To me, that is the most horrible feeling in the world, and I will gladly accept more hours of worry and anxiety if I feel it means not getting sandbagged.  It's like they say..."Hope for the best but prepare for the worst."  Well, imagining the worst case scenario is my way of preparing for the worst.

The counter argument to that is "Why worry about something that probably won't happen?"  Well, "probably" is the key word there.  Notice it's "probably", not "definitely".  I wouldn't worry if I knew that I would DEFINITELY be OK and come out with the world's best fistula, but I don't know that.

I know that others interpret this as thinking negatively, but I don't really care much about how others judge my coping mechanisms.  By preparing myself for the worst, I feel that I am actively protecting myself, protecting my sanity, and my sanity needs as much protection as possible in these life-altering situations.

I am always shocked if/when things go well.  It's a nice surprise, and that's nothing to sneeze at.

I don't think you and I are all that weird.  I'd bet that there are a lot of people out there who cope with things in the same way we do; they just don't go public with it.  haha!  But I have no shame and even less of an ego.

[CebuShan]

       I think there were triplets separated at birth!       I always think, "What's the worst that could happen?" It has worked for everything but my initial diagnosis. (Kidney failure was the furthest thing from my mind!) I also don't think of it as being negative, just prepared. LOL! What a group the three of us would make!

[kevinswife]

Restorer,  you've had a cath or a year and a half?  I didn't know they could be used for that long.  Good to know.  My husband is having surgery Wednesday, Nov. 30 for access in his upper left arm.  He was on dialysis for 3 years prior to receiving a kidney/panc transplant in 1999.  The transplanted kindney recently failed after 12 years, so he is back on dialysis.  He started with CAPD 15 years ago, but kept getting infections every 28 days, and had to switch to hemo.  His arms are pretty scarred up from previous access sites.  I hope his surgeon knows what he's doing.  I'm a worry wort.

[bansix]

I've had my fistula since Sept 29th, so thats about 2 months now. It's in my upper arm which feels okay, but my lower arm and fingers is always numb and at times tingly. They said it will go away, but still no relief yet

[Cordelia]

           MM and Cebushan, I think we WERE triplets separated at birth!

Its so comforting to me that others feel the same here!!            

You both took the words right out of my mouth!   

Sometimes in the past I've wondered since I"ve started all my meds is if whether or not "paranoia"   is a side effect of my drugs!     

Oh, I've been called worry wart, paranoid, freak, you name it, I've been called it when it comes to nicknames for worrying so much!     

It's good to  have a sense of humor about all of it!     

Kevinswife, I'm not sure if you were asking me or not......I've had my cath for almost 16 months. I've never, ever had a problem with it, never an infection not once.

I'm only proceeding with the fistula because I'm not having a transplant like I thought I was supposed to, this winter so now I'm taking it to the next level for the longer term for D.

[MooseMom]

I've had my fistula since Sept 29th, so thats about 2 months now. It's in my upper arm which feels okay, but my lower arm and fingers is always numb and at times tingly. They said it will go away, but still no relief yet

I've never had numbness or anything in my fingers, although if I lie in a certain position on my left side, my fingers do go numb.  Once I switch positions, it goes away.

My lower arm felt tingly and generally bizarre for quite a while afterwards.  I suspect that it has to do with exactly what the surgeon did and how he moved the nerves around.  I experienced twingy bits for up to a year after surgery.  At first it really scared me, but once all of the various doctors looked at it and listened to it and pronounced it fine, well, that's all I really cared about.  Now 18 months later, those sensations have disappeared, and all I am left with is the thrill.

I would never ever call anyone who was facing a serious illness a freak or paranoid.  I think that's rather cruel, actually.  Let them shove a tube into their hearts, and THEN we call talk about namecalling.

[ToddB0130]

I agree that every one has their coping mechanisms that work best for them.  None of them is wrong, as long as you're satisfied with your end result.  Being prepared for any outcome is a great thing and understanding the 'what ifs' of a situation can be very helpful.  Coming here to see different people's experiences or their commonalities with your own experiences can provide great relief.

[Cordelia]

Todd, MM, I so very much agree with you both!           

MM, I've been called everything under the sun.    I just wish I'd be numb to the comments.             What's more upsetting is that it's extended family, so that makes it esp hard.  I've also said the same thing, let's see you do what I'm doing then ....we'll talk!               

I'm a pretty patient person to listen to what they have to say about their problems, and most of all their pain, but it's not okay for me to vent about it I'm supposed to suck it up and get over it. It's soooo frustrating!!!           

It's a freakin' double standard, really.     

[Restorer]

Restorer,  you've had a cath or a year and a half?  I didn't know they could be used for that long.  Good to know.  My husband is having surgery Wednesday, Nov. 30 for access in his upper left arm.  He was on dialysis for 3 years prior to receiving a kidney/panc transplant in 1999.  The transplanted kindney recently failed after 12 years, so he is back on dialysis.  He started with CAPD 15 years ago, but kept getting infections every 28 days, and had to switch to hemo.  His arms are pretty scarred up from previous access sites.  I hope his surgeon knows what he's doing.  I'm a worry wort.

Yeah, I've had my cath since May 2010. Everyone who asks about it is always surprised I've had it so long. I saw the vascular surgeon on Tuesday and he said I must be taking good care of it. 

I have an appointment for the vein mapping on Nov 30. After the initial look-over, he said my fistula would probably go in my left wrist, but he'll see what the mapping says. I have the surgery scheduled for January 6th. I'm not looking forward to it, and I'm pretty scared that it'll be uncomfortable and inconvenient and bothersome and ugly, but I'm resigned to the fact that I need it.

[Cordelia]

LOL that's what my surgeon said too!     

[justme15]

don't know if I should start a new thread or not, but are there permanent lifting and/or activity restrictions after the fistula/graft is placed?
my job is moderately physical and does require lifting at times.  I know initially I will probably be unable to lift, but after it is 'healed' can I resume activity as usual?

[Cordelia]

I'll be getting a fistula tomorrow morning.....I think (from what I've been told-maybe someone else can help better than me) Was that you should not carry a purse/bags on that hand for the first while.....for how long, I don't know.

I know it likely shouldn't be bumped, either.  I do however have a friend who is pre-dialysis though and she lifts with hers and its not an issue. Maybe it just depends on the surgeon.

I know better tomorrow after what to recommend