Fistula fun

[LightLizard]

even though i'm on the cycler, i have a back-up fistula in my wrist, should i need to return to hemo-dialysis in the future.
i woke up the other day and noticed that the familiar 'buzz' ('thrill') was gone from my wrist, indicating that the fistula had failed or clotted. i advised the clinic.
i was called into the hospital (medical imaging) a few days later, where they proceeded to insert a wire with a balloon attached to it to stretch the artery that had collapsed.
it's really not too much fun. they froze my arm, sure, but there's no way to freeze the veins and arteries within the arm, so i have to say that it was one of the most painful hours of my life, so far.
i return for a checkup on the 24th. so, in the meantime, i need to increase my squeeze-ball exercises to make sure it keeps working. otherwise, i get the rotor-rooter treatment again.

too much fun.

[jbeany]

Ahh, yes, the joys of the fistulagram.  I've just had my third since January.  Not having pd as an option, part of the release form I have to sign gives them permission to knock me out completely in the middle of the procedure if they screw up my graft, so they can put in a temp cath.  Such a fun thing to look forward to. . .

[okarol]

Hi LL,
I hope they get it working - Jenna's quit - you can read about it here http://ihatedialysis.com/forum/index.php?topic=2486.0 -
I wish we had been able to act more quickly to save it - always good to have just in case!

Karol

[LightLizard]

thanks Karol. they did manage to get it working again, at least, the 'thrill' is back.
whether or not it keeps working depends on a lot of factors, i guess, and only a few of them are in my control.

love

~LL~

[Sluff]

I'm sorry your experiencing such difficulties and pain. I hope it stays good this time. Please know I'm thinking of you and will keep you in my prayers.   

[Ang]

And  i  thought  I was  the only  1  who  had  the  privilege  of  a  fistula gram,  went  to  see  the  vascular  surgeon  yesterday,  he  checked  the  films  and  reckons  have  to  see  if  a  pattern  occurs  of  high  venous  pressures,  but   the  hard  part  is  each  nurse has  pump  speed  at  different  speeds  therefore  pressures  rise  and  fall  accordingly. Don't   help  myself  by  falling  asleep  on my  arm(bad  habit since)if  pressures  stay  the  same  I'm  right  if  not  hospital  here  i  come  again







EDITED: Fixed  icon error - Sluff/ Admin

[TynyOne]

I just wanted you to know that I too, went through that horrible, horrible, procedure of "attempting" to unclog one of my fistulas and it did not work but anyways, that was the MOST WORST FREAKING pain I have been through in all my life!   I cried and cried just about the whole freaking time and another unlucky thing for me, I had a real smart a** doctor that was doing the procedure and all he kept saying was, "I am sorry" (in a smart a** tone) and one of the nurses EVEN said, "doctor she is in quite a bit of pain" and he said, "what do you want me to do about it, I can't get to a vein".  Yes, I understand that he probably could not give me anything for pain until he got to a vein but for one, he did not have to be such a smart a** to me NOR to his nurses!  I had the option of letting him do it or my own kidney specialist and at the time, I thought well one can probably do it as good as the other and that might have been true but I know my own personal kidney doctor would not have been such a butt about it to me OR the nurses.  I guess the reason I allowed this doctor to do it was because he is the one that is over all the kidney specialists within that group but I tell yall right now, THAT doctor will not touch me again!     (as long as it can be an option)

None of my 2 fistulas have worked nor has my graft; therefore, I still have my catheter that has been in since December.   Yes, I realize I am taking a risk but I have been thru 4 surgeries and 3 "procedures" w/in 6 months and I am just up for anymore surgeries..............maybe later but not for a long time.........I am sorry you had to experience that too, LightLizard.

Tammy

[Lucinda]

Read the book, seen the movie...............my graft has been blocked six times in the past six months so I know exactly how you feel....but I am not even on dialysis yet.  I think we just have extremely inaccessible accesses which is a total pain.  Hope everything improves for you.  xxxxx

[LightLizard]

well, it seems that something is very wrong with all of this fistula backup stuff. i think its a way of making money when there's nothing else thay can do for us. may as well make some money off of the walking dead, hey?
like most of us, i have given up or had taken away just about everything in my life that gave me joy and pleasure. it seems like the ultimate insult to have to go through the pain and suffering of a fistulagram just to keep this life of lack going.

[bdpoe]

I had the same thing done in the hospital and was sedated. I don't remember much.

I can't imagine going through that without serious pain meds.

You may feel exceptionally down in the dumps right now and all joy has departed.

I feel that way a lot too. Many of us do.

Some hang on for hope while others hang on for fractions of occasional satisfaction.

Fight for your life. Keep up the good fight.
...bd

[LightLizard]

the doc who performed the procedure said to me, near the end of the hour, 'wow, you're a real trooper. most people ask to be sedated for this.' i could have, and probably would have kicked him in the groin if i were't strapped down to a table. nobody told me i was going to have such a procedure done. they gave me the impression that all they were going to do was x-ray my wrist to get a better idea of the blockage problem. i was not told there would be a wire forced through my vein and a balloon inflated in there to stretch the artery. i was not told that i had an option to request a sedative or asked if i wanted the procedure done in the first place.
there's something very wrong when there is no communication between staff and patient.
the problem is, if you ask to be educated before hand, you are branded for life as a trouble-maker, and any medical staff that you find in your path will certainly be made aware of your tendency to be 'unco-operative.'

[keefer51]

I had four Fistulagrams. Each one as painful as the first. Their idea of how much pain a human can take is morbid to say the least. They hooked up a IV but what ever they were giving me for pain didn't work. I believe and will always believe they get a certain amount of enjoyment of watching how much pain they can inflict on a human. The power they have is mind boggling. I have my third fistula and it is working fine. Sorry to hear of your experience.

[LightLizard]

the thing that bugs me, really, is that they want to see me again on the 24th, as they say, to 'look at' my fistula. there is no mention of a procedure being offered, but i have a strong feeling that they plan to use an even larger balloon this time, to insure that the fistula keeps working.
i would like to tell them, as long as the fistula is working, that i would prefer to not have another fistulaplasty, thank ya very muchly. in my case, the night cycler is doing a very good job, so far. i understand that the fistula is for back-up, but really, how could it NOT shut down when it is never used? and even if i did have to go back to hemo dialysis and the fistula wasn't working, they could insert a perm-cath until they could get a fistula working. the problem is, that kind of thinking is not 'cost effective,' and doctors need new golf clubs, hey, it's summer!
i know if i make a 'stink' about this that i will have some red marker on my chart for future health-care workers to be warned about. it's quite an interesting game, if a bit medieval, hm?

it sure is nice to have a place to vent!

thanks Epoman, wherever you are, now.

love

~LL~

[jbeany]

Something else to think about - I've needed mine ballooned approximately every 3 months.  I have a friend at my clinic who has been going in 4 or 5 times a year for the same thing.  If your fistula is going to require the same amount of effort to maintain, you might have to repeat the procedure on a regular basis as well.  My billing statements (and thankfully I don't actually owe this!) say that the procedure costs about $20,000 by the time you add in the doc's fees, recovery room costs, use of the machine, etc.  I don't know about your insurance, but mine has a lifetime cap of one mil.  At 80,000 a year, for however many years you stay on PD, that could add up awfully fast  - is it worth it to attempt to maintain it?

[LightLizard]

Something else to think about - I've needed mine ballooned approximately every 3 months.  I have a friend at my clinic who has been going in 4 or 5 times a year for the same thing.  If your fistula is going to require the same amount of effort to maintain, you might have to repeat the procedure on a regular basis as well.  My billing statements (and thankfully I don't actually owe this!) say that the procedure costs about $20,000 by the time you add in the doc's fees, recovery room costs, use of the machine, etc.  I don't know about your insurance, but mine has a lifetime cap of one mil.  At 80,000 a year, for however many years you stay on PD, that could add up awfully fast  - is it worth it to attempt to maintain it?

considering the fact that my fistula has never been used, and won't be, as long as P/D works for me, no, it's not worth the cost at all, and it certainly doesn't justify the pain involved with the procedure. recovery room time? i was booted out as soon as the doc was finished with me, last time. there was no mention of 'recovery' at all. a nurse did escort me to the change room to make sure i wasn't going to pass out and to give me a wad of gauze 'in case you spring a leak on your way home' she said...
now, almost a week later, i have a huge, purple bruise on my forearm.

here, in canada, our health care system covers everything like this, so the docs can pick and choose their victims...er...patients, as their financial needs demand, without patients having to concern themselves with the cost.

[jonn r]

ahh fistulagraph .....i was going to have one this week ...........BUT NOOOOO....... they turned up my speed to 500 and now it is working at 75%...i am so happy

[LightLizard]

when you think of it, it can seem to be a real scam. the fistula is not a natural occurance in the body, so, if it is not used regularly, the body will do what it does and attempt to heal it. in other words, 'shut it down.' in my case, peritoneal dialysis is working quite sufficiently, so my fistula is merely a 'back-up' should i need to return to hemo-dialysis, all of a 'sudden.'
but really, if that came to be, and my fistula was not working, it would be no sweat or fuss for them to put in a permcath until the fistula could be repaired. the permcath can be used immediately and removerd, of course, when the fistula becomes 'mature.'
i guess they gotta keep tham imaging techs and nurses busy, hm?

[mixplix]

I am with you! I had a left Bicep fistula since 99, I transplanted in 2001. I lost the transplant in 2005. I always thought my old fistula was permanent. NOT! When I went back on dialysis, it was no good. Now, I have a right forearm fistula too, works, but now BOTH my arms look deformed.    What if I got a traqnsplant again, and the new one failed? I don't know....

[Black]

I am with you! I had a left Bicep fistula since 99, I transplanted in 2001. I lost the transplant in 2005. I always thought my old fistula was permanent. NOT! When I went back on dialysis, it was no good. Now, I have a right forearm fistula too, works, but now BOTH my arms look deformed.    What if I got a transplant again, and the new one failed? I don't know....

That is why it is so important to start with a lower arm fistula and work up to the bicep, so you can postpone going to the legs.

     I get so frustrated when I read the stats about the huge number of patients getting grafts and upper arm fistulas only because they had incompetent and uncaring medical care.    

[angela515]

I could never get a fistula, viens were too small and horrible. I got a graft put in both my lower forearms, a few of them worked for a little bit, like a month or 2, one didnt work at all... finally they moved to my bicep, that never worked, it actually got infected and was taken out... my legs are and will be my only option next time i'm on dialysis... thats why I switched to Pd this last time.