Question about Fistula's

[jagermiester]

I have a question.  After doing a lot of reading, I have seen where some have said that they have had their Fistula's for a year and has not had to use it yet and some use it as soon as they can.  It is put in for "when"  or "if" they need it. What happens if it turns out that the you will not need Dialysis?  Can the Fistula be reversed or do you live with it the rest of your life? 

I hope this doesn't sound like a stupid question. 

[MooseMom]

I suppose that somewhere in human history, there have been occasions when someone has had a fistula created and then not had to use it, but that's usually because they had a pre-emptive transplant just in time.  Usually, if someone nearing renal failure already has a live donor lined up and ready to go, they won't choose to have a fistula done and may have a chest catheter put in instead should the transplant not happen before dialysis is needed.  There is always that question of what a transplant patient should do with the fistula they've been using for years, but that is a decision left up to their vascular surgeon.  Some transplant recipients find that after their new kidney begins to work, the fistula surprisingly just stops working.  Some surgeons advise to keep working fistulas untouched in case the need for dialysis surfaces again should the new kidney stop working.

But I just don't know of anyone who has had to have a fistula created because it was looking more and more likely that renal failure was close, only to discover that they won't ever need dialysis nor a transplant.  It's definitely more a "when" than "if" question.  I've had my fistula for over a year, but it wasn't created until my egfr declined to 18.  I had never seen a marked improvement in my condition (fsgs), and certainly no one expects me to ever regain good renal function.  The only way is "down".  It's just a matter of how quick the decline will now be.  It's horrible.

[jagermiester]

Thank you. 

[sullidog]

Yes, if you are on dialysis but have donors lined up people may choose or at least the ones I know choose to stick with a catheter, I have one failing graft which is the same as a fistula but an artificial vain, and I still have it, my vascular surgeon won't remove it unless it starts giving me issues, he even said he doesn't like to remove them unless they really need it as not to put the patient at infection risk during the surgery.

[Willis]

I've had a fistula in my left upper arm since March of this year and haven't used it. I'm on CCPD now but had the fistula put in before I knew which modality I was going to choose for sure and also as a backup in case I ever need it. My vascular surgeon didn't think this was unusual...the only thing he wouldn't do was the fistula surgery and the PD catheter surgery at the same time. For me at least, the fistula surgery was nothing...the PD surgery was much worse and I'm still having bouts of pain from that after nearly 3 months.

 

[malaka]

My fistula isn't quite a week old.  My nephro recommended getting it done in advance of any need for dialysis as they take 6 to 8 weeks to "mature" so they can be used.  They are not put in willy nilly, but in anticipation of future use. Even patients planning peritoneal dialysis get them if they have to switch to hemodialysis due to infection, etc.  So far, no problems with mine.  Can't tell you if they get reversed or not as risks of bleeding, infection, etc., may outweigh benefits of not having fistula (i.e better circulation in hand).

[jagermiester]

Thank you all for your replies.  I've got another question if you don't mind. When do the doctor's start suggesting when to put in a Fistula.  I mean, is it at a certain stage or a certain GFR number or how the person feels?

[MooseMom]

Thank you all for your replies.  I've got another question if you don't mind. When do the doctor's start suggesting when to put in a Fistula.  I mean, is it at a certain stage or a certain GFR number or how the person feels?

That's where medicine becomes an art as much as it is a science.  A lot depends upon the rate of renal function decrease.  If a neph suspects that your kidneys are going to fail sooner than later (and your lab numbers show a precipitous decline over the past year), then s/he may want you to get your fistula done sooner rather than later.  And every neph bases these judgments on his/her experience

Hindsight is 20/20, so I could say that yes, I could have waited another year before having mine created, but knowing myself as I do, I would have driving myself crazy.  As I've said so many times before, the day my fistula was created was one of the most horrible days of my life, and the days leading up to surgery were right behind it in their horrible-ness.  I thank God every day that THAT day is in the past.  But as a general rule, I'd say that once your egfr drops below 20, you should be thinking about not only getting a fistula created but also about getting on the transplant waiting list if that's a treatment you want to pursue.

[jagermiester]

Thank you. Unfortunately, I am not eligible for a transplant due to the fact I had Breast Cancer.  I have to be cancer free for 5 years before I can be put on a wait list.  I am only 2 1/2 years cancer free.

Thank you all for your replies.  I've got another question if you don't mind. When do the doctor's start suggesting when to put in a Fistula.  I mean, is it at a certain stage or a certain GFR number or how the person feels?

That's where medicine becomes an art as much as it is a science.  A lot depends upon the rate of renal function decrease.  If a neph suspects that your kidneys are going to fail sooner than later (and your lab numbers show a precipitous decline over the past year), then s/he may want you to get your fistula done sooner rather than later.  And every neph bases these judgments on his/her experience

Hindsight is 20/20, so I could say that yes, I could have waited another year before having mine created, but knowing myself as I do, I would have driving myself crazy.  As I've said so many times before, the day my fistula was created was one of the most horrible days of my life, and the days leading up to surgery were right behind it in their horrible-ness.  I thank God every day that THAT day is in the past.  But as a general rule, I'd say that once your egfr drops below 20, you should be thinking about not only getting a fistula created but also about getting on the transplant waiting list if that's a treatment you want to pursue.

[MooseMom]

You are not compelled to get a fistula at all, EVER, if you don't want one.  No one is going to deny you treatment, nor will they put a gun to your head and wheel you off to surgery.  It's entirely your choice.  Your neph can and should make recommendations, but you can ignore him/her entirely and make your own decision whenever you want.  I'm hoping I will be able to stave off dialysis for another year!  The human body is a mysterious thing.  You never know what is going to happen and when, but I decided to be ready. 

[jagermiester]

Wow, thank you.  When my kidney's failed last year, it was one of the scariest times of my life because I had NO idea what was going on.  It came out of the blue and hit my up the side of my head.  All I know is that I had gone to the ER because I had been throwing up for weeks, felt really lousy and had almost passed out that night.  I had gone to my GP and he said that I had an ulcer and not to worry.  But that night in the ER, after waiting about an hour for the labs to come back, the doctor walked in and said that he was admitting me and that I was in kidney failure and the next thing I knew I had all kinds of people around me hooking me up to heart monitors, putting IV's and stuff. My GFR has started falling again and in 5 months it fell 0 points and all I keep thinking of is, what happens if I do the same thing again and it just drops.  I don't want a catheter, that scares the hell out of me.  this whole thing scares the hell out of me.  In fact, I'm having a harder time with all of this than I did when I had cancer.

You are not compelled to get a fistula at all, EVER, if you don't want one.  No one is going to deny you treatment, nor will they put a gun to your head and wheel you off to surgery.  It's entirely your choice.  Your neph can and should make recommendations, but you can ignore him/her entirely and make your own decision whenever you want.  I'm hoping I will be able to stave off dialysis for another year!  The human body is a mysterious thing.  You never know what is going to happen and when, but I decided to be ready.

[jagermiester]

Sorry guys, my thoughts were faster than my fingers.  My GFR was climing and reached 49 last February and then when I had labs in May it was 45, in June 44 and last week it was 40.  I'm doing labs again Monday.

[MooseMom]

The hardest thing is just not knowing what the hell is going on.  You don't know what to steel yourself for.  It's hard to know how to prepare yourself.  If I remember correctly, you have a neph's appointment in about a week's time, is that right?  This is where I should say, "Put all of this out of your mind until your appointment, and then see what the neph has to say, and THEN go from there."  But how can anyone put something like this "out of your mind."  It drives you out of your mind!   And this is also where I should say, "Make a list of questions you will want to ask at your appt.", but how do you know what to ask if you don't know what the hell is going on in the first place?  You can twist yourself into a mental pretzel!

And yes of course it is very scary!

There is a great online tool that I happened to look over again yesterday called "Kidney School". 

http://www.kidneyschool.org/mods/

I don't know how much research you have done on kidney disease and treatment options, but this is a very good place to start.  Start with the first module; you can do it all online, at your own pace, and you can skip around to different modules/chapters as you please.  This might help you to prepare for your appt.  And of course, if you have any specific questions that you want to ask before next week, let us know and we will answer as best we can (always keeping in mind, though, that our answers may be generic and not specific to YOUR situation, whatever that is!)

[MooseMom]

Sorry guys, my thoughts were faster than my fingers.  My GFR was climing and reached 49 last February and then when I had labs in May it was 45, in June 44 and last week it was 40.  I'm doing labs again Monday.

One thing I did (and still do) that I found helpful is to ask for and keep a copy of my lab reports.  I went a step further and kept a little chart so that I could spot trends.  There are things to keep an eye on other than just egfr.  Look for creatinine levels and urinary protein loss.  I've kept my chart ever since my first appt with my current neph 7 years ago.

One question you may want to ask is what does your neph expect to happen?  What is his longterm prognosis.  He may not want to commit himself, but it is worth asking.  My neph has kept me off dialysis for all these years when he expected my kidneys to collapse any day, so as good and experienced as my neph is, he was wrong about the shortterm prognosis.  I'll still end up on dialysis, but I beat it for many years longer than he anticipated.

[rsudock]

I got my fistula created when I was very young but never use it for 10 years...I never got it reversed b/c I knew eventually I would go on dialysis...I think since I had it for so long it didn't infilitrate as much when I first started using it...

[Ang]

fistulas can be reversed, but ever rarely are they,because eventually most people need them.

after transplant most people keep them for the possibility of futher use a long time down the track.

a few have been known to clot  too after a transplant