Access care info....Thanks IDH !

[stringbandbeth]

Thanks once again to All at I Hate Dialysis,
    Just lurking around a few months ago and came across some posts from folks having their fistula care done at a company that does nothing but access care. My hubby's fistula surgery was done while he was an in-patient in ICU @ Yale. His surgeon was  top notch and the chief Fellow of interventional radiology. The issue has always been getting follow up care. We would go for a fistulagram at the hospital at 9am and wouldn't get home until 6pm. I would have to chase the doctor down in the back halls of the radiology wing to even find out what they had to actually do in there after the procedeure.  And then pay 20$ for parking for an entire day for what should only take 30 min.None of his Docs or nurses ever mentioned that these procedures are done in private offices in multiple locations in CT.
   Well, he started having access problems and I asked the new home hemo nurse about a new Vascular guy. She set up an appt. at an access care place with a highly recommended surgeon  and we were even able to pick the day and time ourselves!.
  It was like night and day!  The appointment was at 9:30 and we out of there by 10:45! I got to talk with the Doc before and after the procedure and even came home with a very cool DVD of the whole fistula before and after. I do his canulations and the pics have already been really helpful.
  So I just wanted to say thanks again for all the posts here.  The shared Knowledge and experiences are empowering and invaluable .
                                                    Peace,
                                                      Beth
           P.S. Still looking for anyone who might have some experience with NSF -Nephrogenic Systemic Fibrosis - A condition caused by gadollinium  contrast used in MRI"s that only affects People with little or no kidney function. Hubby is getting worse every year and no one can seem to give us any idea how much it will progress . He can't move his ankles or toes now and I have been making modifications to our house to accommodate but I would really like to know if we are going to need wheelchair access and how soon. The only docs working with NSF around here are conducting studies at Yale and don't see patients normally. Bear has too many co-morbidities and they don't want him in the study so no treatment.

[Rerun]

I'm glad our site was helpful.  It has helped me too.

Hang in there. 

     

[amanda100wilson]

can't help on the medical front, but have you considered taking legal action against e hospital who used gadolinium contrast on him?  this condition is a known side-effect of this contrast in kidney patients.

[stringbandbeth]

Amanda- the MRI was done BEFORE the FDA put an official warning out about Kidney patients. So we can't sue  or even participate in the class action. It was done in the ER when Bear had a stroke years ago. Took almost 4 years before we started seeing how much damage was done. The only thing that seems to help other patients is a transplant and he can't have one. Just looking for any info on how this thing progresses.