Fistulagram gone bad....

[MaryJoe]

   Glad to hear you're doing so well!  I hope this takes care of all your access problems and that it will be smooth going from here on out!

[Big E]

 

Glad to hear you're doing better in time for Christmas, Rerun. Hope you have a Merry Christmas/Happy New Year without any complications. This is really good news.

[AnnieB]

I'm glad it worked out for you!  Hope you have a wonderful Christmas....

Anne

[Whamo]

Have you considered PD?  I love it.  I had three fistula surgeries, one when the first fistula failed, and two more for the next one, before I went on PD.  My thrill is good, but I decided to try PD instead.  I hate having thick needles stuck in my arm for four hours, and the cramps I'd get at the end of too many sessions.  Now I hook up, have 18 feet of line and freedom to walk around my room, go to the bathroom, and spend most of the 10 hours asleep.  You just have to follow the PD procedures to the letter, and never take shortcuts.

[Rerun]

Have you considered PD?  I love it.  I had three fistula surgeries, one when the first fistula failed, and two more for the next one, before I went on PD.  My thrill is good, but I decided to try PD instead.  I hate having thick needles stuck in my arm for four hours, and the cramps I'd get at the end of too many sessions.  Now I hook up, have 18 feet of line and freedom to walk around my room, go to the bathroom, and spend most of the 10 hours asleep.  You just have to follow the PD procedures to the letter, and never take shortcuts.

Thanks.  Yes I was on PD 25 years ago and loved it.  They didn't even have the cycler then.  Just manual exchanges but no needles.  Then I had my transplant and at the end of that (17 yrs) I had some abdominal surgeries (about 3) so now there is too much scar tissue for the peritoneum to be permeable enough for PD to do its thing.  I LOVED PD.

[kennedy56]

It will get better.  take care.

[rfranzi]

My graft clotted off once after a fistulagram but not the same day but a week later, clotted, fixed it, reclotted off again within the week, this time put a new cover stint in, that was back in May, knock on wood running fine ever since, I asked my surgeon if he knew why it clotted after the fistulagram he didn't know he said that his theory is that a pease of the vesil wall broke loose after the fistulagram causing the clott, then I asked an interventional radiologists the same question and his response is sometimes the vein renarrows after the fistulagram so in short I don't think anyone knows.
Good luck!

Do you ever wonder if "no one knows" by design? If they had to admit they screwed up in any way, there would be accountability, and they are all paranoid about lawsuits. I am noticing several "pat" answers to certain questions -. such as: "The fistula tends to move", "We just don't know why - everyone's different" (I love that one - I always want to say, then what am I paying you for and why are you here?) and so on. One of my favorites is, "Other patients don't have that problem". I have finally learned to say, "I don't care about your other patients, I want you to care about and focus on me." I am so tired of them deflecting every problem and mistake. And, if you try to point it out or "fight" for proper care, as we must do, they take it personally, as if it was ever really about any individual one of them at all - doctors, techs, nurses and so on. I am not trying to marry them or be their best friend, I just want them to do their jobs. You'd think I was asking them to change the weather. I am getting other people involved in my advocacy, but find that people generally do not know how to advocate for themselves or others if they haven't dealt with this situation before. I liken it to teaching them how to deal with bullies. I have had to explain that advocacy is speaking up for the patient who, for whatever reason, physical illness or simple emotional frustration and exhaustion, and it means standing up for their rights. Not just asking, for instance if a prescription can be filled when an error was made, but correcting the error and so on. I find it takes constant diligence and pretty much all of my extra effort to just keep my head above water, and that depends on the day. Hang in there, all. I have personally improved since my last post, for now, of course, and did my first buttonhole needle myself today. Take care everyone, and keep on keeping on.

[ODAT]

Hey Rerun, just wanted to say I hope you are feeling better.

[kevno]

Hi Rerun
Long time since i have been on this site. Don't use my laptop much. have a ipad 4 which i use, so thought i would wake up the old Rerun (sorry ) laptop.

Hope your fistula is working ok, well a lot better than mine (still on lines) they had a go at starting the fistula 44staples thay cut up the vein from my wrist to under my arm. I have 2 inches of fistula sort of working in an emergency. This site as grown Bill would have been proud. 

hope you are well

Kevno (Manchester)
p.s Happy new year.

[Rerun]

Hi Rerun
Long time since i have been on this site. Don't use my laptop much. have a ipad 4 which i use, so thought i would wake up the old Rerun (sorry ) laptop.

Hope your fistula is working ok, well a lot better than mine (still on lines) they had a go at starting the fistula 44staples thay cut up the vein from my wrist to under my arm. I have 2 inches of fistula sort of working in an emergency. This site as grown Bill would have been proud. 

hope you are well

Kevno (Manchester)
p.s Happy new year.

KEVNO!  Hi mate!  I'm so glad to hear from you.  Geoff Camp has just posted again.  Old Home Week!!!

Happy New Year!

[Rerun]

I just got back from the six week check up on my left upper arm fistula revision.  Surgeon says we can start using it.

Always full of good news, he told me my right forearm graft is narrowing off again and will eventually fail.  He won't use stints.  I get so mad.  Why not put a stint in there and keep it open.  I think it is job security! 

So we could do a fistulagram now and try to keep it open.  Oh, yeah, like that worked last time!  I'm not falling for that again.  Or, we could just wait until it fails and then deal with it.  OK, let's do that.

This will all end someday.  Thank God!   

[MaryJoe]

Glad to hear the new fistula is working, especially if the graft is going to narrow off.  I don't understand why he won't do a stent.  I know you only need one good access, but I'd think a spare would be a nice alternative (just in case). You have been known to be slightly unpredictable in the past!