Fistula question

[calypso]

Ok so they tried to put in a fistula a couple of weeks ago and it clotted. The surgeon that did it is good, but there is a better surgeon willing to do the surgery but my insurance won't pay. So he says to me go to the ER and tell them your fistula stopped functioning, and have them page him and he will do the procedure. Also one of the dialysis nurses said to maybe seek an interventional radiologist who can possibly fix the clotted fistula.

At this point I don't know what to do I about want to give up on fistulas altogether but I know I can't use the catheter forever so, what should I do? Thanks everyone.

[kellyt]

Can you appeal to your insurance?  Sometimes even the surgeon can send a letter (or 2 or 3 or 4) to get the insurance to pay.  I used to work for an allergist and I know that when a patients insurance would deny immunothereapy (allergy shots) the doctor would make sometimes several attempts, including copies or records, to show the necessity of the shots.  Maybe you can do that?  Good Luck!!!

[calypso]

It's weird, when I asked if they could just bill medicare and then I can pay 20%, the surgeon's secretary said the insurance won't allow them because the insurance is primary and medicare is secondary. I dunno what's goin on.

[sullidog]

I would fight the insurance company, if there's a surgeon that thinks he can fix it I'd say give him a try.
Troy

[MooseMom]

Why won't the insurance company pay?  Are you on an HMO?

[calypso]

Yes HMO.  I dunno, at this point I don't even want a fistula anymore, i will just stick with the catheter. I spoke with the surgeons, even the one i wanted, and they don't seem to care that my blood tends to clot. i even clot the chamber in the dialysis machine and that's while I'm on heparin on the machine! So of course I now have no confidence in either surgeon to get this next fistula right anymore than the last one. It clotted up before I even came out of anesthesia! I mean WTF even I know they should have done a blood test to determine how fast my blood clots and put me on the appropriate blood thinner and I'm not a doctor! I'm supposed to trust these incompetents?

This much and no more, i draw the line here! no fistula for me.

[MooseMom]

I don't really know much about this, but by what you've told us, it seems that the problems is not so much the surgeon as it is your blood, so yes, I would think that if you have a clotting problems that manifests itself in all of the ways you posted about, that's what needs to be addressed first.  That just seems to be the logical first step.  But I don't blame you for not wanting a fistula after the problems you've had.  Are you sure that HD is right for you?  Is there a reason you are not on PD; might that modality work better for you?

[calypso]

  thanks for the hugs moose mom, I was on PD for 6 years but I got peritonitis last sept. and they told me I can't do PD anymore after removing the PD cath. :-(

[MooseMom]

Oh man, that sucks.  I see the problem more clearly.  I doubt your docs are going to let you keep your catheter forever as it can be dangerous, but I don't know what else they can do.  Really, though, have they given any thought to whether or not you have a peculiar clotting problem?  If you have trouble even with your catheter at D..maybe this is a more common problem than you realize?  I mean, if they seem so nonchalant about it.  It's really odd.  Maybe another IHDer has some insight.

No wonder you are so frustrated!  Why can't you do PD any more?  Did your bout with peritonitis cause too much scarring or something?  Sorry...I don't know much about PD.

[lunadatura]

Even though I am on PD I have a back up hemo acess. I have had two and both clotted. They tested me for "hyper cogagulation factor" which I dont have but i still seem to be an awesome clotter. Have they tested you for this factor yet? If not demand that they do!!

[MooseMom]

... i still seem to be an awesome clotter.

OK, that made me laugh!

[sullidog]

I didn't want a new access either, but my doctor had a fit.  Just wondering, can a doctor fire you from the practice if you refuse to get a fistula?
Troy

[festerovic]

I'm almost in the same boat - I am on PD and they are asking me to get a fistula put in. I am also an awesome clotter (LOL) while I was on hemo (which I am back on, need to repair a hernia) and it makes me very nervous that the fistula(s) will have problems.

When there is a clot, does that mean that fistula is hosed and can't be repaired? And aside from previously mentioned "hyper coagulation factor" is there any other tests I can request to make sure they have a handle on things before cutting? How common is a clot anyways?
-Greg

[lunadatura]

my vascular surgeon has told me that I noticed the clot they could have plumbed it to keep it working. the problem with PD and having a fistula is that I did not notice the clot until way to late. If you notice your thrill being reduced you have to page the doc and get into to have it roto rooted ASAP.

[calypso]

Oh man, that sucks.  I see the problem more clearly.  I doubt your docs are going to let you keep your catheter forever as it can be dangerous, but I don't know what else they can do.  Really, though, have they given any thought to whether or not you have a peculiar clotting problem?  If you have trouble even with your catheter at D..maybe this is a more common problem than you realize?  I mean, if they seem so nonchalant about it.  It's really odd.  Maybe another IHDer has some insight.

No wonder you are so frustrated!  Why can't you do PD any more?  Did your bout with peritonitis cause too much scarring or something?  Sorry...I don't know much about PD.

Yes too much scarring to do PD again. Yeah they don't want to do any tests or rework the clotted fistula they just want to rush me into the operating room and try again on a new site on the upper part of the arm. I just want to say to them: Great plan docs. Let me know when you come up with one that makes sense.