Venous Pressures, Fistulagrams, and other things no one told me about.

[jbeany]

The last two dialysis sessions, they have taken my graft pressure, and determined that the venous pressure is running too high.  The nurse who performed the test and calculations yesterday, while standing there looking utterly healthy, and rather distracted as I'm questioning her about what she is doing, graciously informs me, "It might indicate a clotting problem, but they can fix it with a balloon.  It's nothing."

Well jolly good that you think so, lady.  But the minute they have to do it to ME, it ceases to be "nothing"!

When I got up today, I had a message on the machine from the woman at the center who does all the paperwork.  She tells me to call her, and that she's made me an appointment.  So I call her back, and she tells me she's made an appointment for next Wednesday.  Gee, thanks for the notice.  I realize I may not have a life, but did it occur to you that my family, who will have to take me to this thing, might actually have things they can't just drop?  Apparently not.  She rattles on about my scheduled time being at 9:30, so I'll have to be there an hour early, of course.  Wait, what?  Be where?  For what?  She backtracks, and tells me my doc wants me to go for a fistulagram.  Thankfully, I know what that is from reading on here, but how many of the patients at the center don't know that?  And, no, I don't have any idea where I have to be.  I've never had one of these things before.  "Oh, well, at Ambulatory Surgery, over at the hospital."  Huh, outpatient surgery really doesn't sound like nothing to me; does it to you?  I'm trying to get a word in edgewise, to ask more questions, but she cuts me off with "I'll talk to you about it on Tuesday, when I call to confirm your appointment time."  Gee, thanks for leaving me to spend the weekend wondering - how gracious.

So, here I am, at my usual source of information.  I've found this on here already . ..

Helloooo whats a fistulagram?

A fistulagram is where they do a  x-ray study of your fistula. It is used to detect problems such as a clots or narrowing area in the fistula and vein.  They inject a dye and take x-rays to see how the dye is flowing in the fistula.  If an area is narrowing or there is a clot they can stick a wire with a balloon into it and expand the narrow area or break up any clots.

. ..  but I have a few other questions, if anyone has answers.

How long does this take?  How worried should I be about the dye?  I still have about 10% kidney function - will they be using enough dye that I should be worried about losing it?  Will they knock me out, give me a local, or give me some kind of tranquilizer?  Is any particular kind of dye better for preserving kidney function than others?  Will they only do the x-ray part of this and reschedule the widening if I need it, or do they do it all at once?  Is it the usual prep for outpatient surgery - as in, no food after 8 pm, no fluids after midnight, or is it less serious than that?  Are there any problems with this procedure that I should know about ahead of time?

 

[Sluff]

Sending along moral support to you jbeany. I'm ignorant about the test but I do hope this goes well for you.
 

[Black]

... I still have about 10% kidney function - will they be using enough dye that I should be worried about losing it?  ...

Actually it may just be a matter of preference, or taking precautions.  We had to make that decision before Mike had his fistula revision.

His original vascular surgeon wanted a fistulagram with dye.   We found another surgeon who said that a doppler ultasound would be okay instead.  When we asked him for more information about the difference, he told us that there would be only a tiny bit more information gained from using dye as opposed to using the ultrasound, and that it was not worth the risk for that tiny bit of info.   He said he could find everything he needed to know from an ultrasound.  Of note is that my husband said the tech doing the ultrasound was much more thorough than the tech who did his original ultrasound prior to his first fistula surgery.  So maybe the doc has to specifiy how much detail they want??

I have read that the chance of kidney damage is lessened by having the patient well hydrated the day before and having an IV started a couple of hours ahead of the dye injection.

If I were you, I would try to insist that they use a doppler ultrasound instead of the dye, and perhaps compromise only if they flatly refuse to use the ultrasound.  JMO

[jasperkat]

My husband had a fistulagram and it wasn't too much.  Didn't knock him out or anything.  It took about an hour.  More importantly, I have made it clear to the Medical Drones that in fact both my husband and I have a ilife and that they must consult with us before scheduling appointments.  As I tell them if won't do anyone any good if I am out of work.  I try to be flexible but they do work for us.  The dialysis unit would give anything to get hubby a kidney - if I would just go away.  Good luck with your fistula problem my husband has had his share of them too.

[charee]

Yeah I'm with Black on this ,Try and preserve what little function you have , some Dr and tech just don't seem to understand that . When i have CT scans  to  see how big my pkd kidneys are .They always try and inject the dye BUT i refuse and explain and they look at you  like your an idiot then go and ask someone and come back and say  I'm right . Some people have no idea !!Just my   worth. Hope all goes well

[kitkatz]

After you have begun dialysis the medical community really dows not give a hot damn about preserving your kidney function.  That is pretty much what I was told on Thursday.  "Oh, as long as you dialyze 24 hours after the test we are not worried about the kidneys.  You have little function already."  Well thanks a bunch folks.  These are my little functioning kidneys we are talking about.  I would talk ultrasound with these people if they just want to see the graft. If they really think something is wrong let them do the fistulagram after they see the ultrasound results.  Good luck!

[jbeany]

I got that same argument from the charge nurse today, kit, when I stated my objections to using dye.  No doctor in sight, of course, so I get to try again on Tuesday, when he will be there.  *sigh*

The nurse told me I didn't sound like I trusted the doctors and nurses much.  She looked offended when I snapped back with "Of course I don't!"  If I'd trusted all of my doctors, I'd be dead already.

[Epoman]

I got that same argument from the charge nurse today, kit, when I stated my objections to using dye.  No doctor in sight, of course, so I get to try again on Tuesday, when he will be there.  *sigh*

The nurse told me I didn't sound like I trusted the doctors and nurses much.  She looked offended when I snapped back with "Of course I don't!"  If I'd trusted all of my doctors, I'd be dead already.

Good for you, I don't trust doctors or nurses either. Over the years I have met MANY nurses who I would be willing to bet literally BOUGHT there license. And most doctors I have met are well educated but many stick to one way of doing things, even when there are newer and better procedures to try. Some doctors are very closed minded when it comes to listening to the patient and what the patient thinks should be done, even after the patient has done massive research.

- Epoman

[nextnoel]

I don't really know much about this, but my nephrologist is absolutely adamant that I not have dye, even to the point of advising me not to have the cardiology test my insurance company approved (they wouldn't approve a newer type test that didn't involve dye), unless the cardiologist was certain my heart trouble was bad enough to require it (i.e., not to have the test with dye unless they were already nearly certain I needed angioplasty, not just to investigate).  And I  read just last night that even the tiniest bit of kidney function is helpful, and it's important to do all you can to preserve it.

You go, girl!  Look out for yourself - you're the best one to do it!

[mallory]

Okay, this is probably a dumb question, but, is it only the kind of dye they inject or give you in an IV that's bad for your kidney?  I had a CT scan on Thanksgiving and they had me drink a quart of some kind of contrast dye solution before the test.  Is that bad for your kidney?

[BigSky]

There is a risk of kidney damage from the dye.  However it is a pretty small risk.  In the same line of them tearing the fistula or damaging it beyond repair or use again when they do a fistulagram.

If one has diminished kidney function and is not on dialysis yet then the risk may not be worth using the dye.

Once on dialysis the kidneys are at the point that are not helping anyway.

However it should be up to the patient to determine if it is a risk they wish to take.

[Chicken Little]

I feel your pain.  It seems since I went on disability my doctor's office thinks they can schedule my appointments without talking to me.  They scheduled the add-a-tube-2-me surgery and didn't even tell me.  I felt like saying, "I'll need to check that date with my driver, because my transporter beam is broken - again."  Thankfully, my husband stepped up to the plate and cleared his calendar.   

[nextnoel]

Here's what I was referring to in my earlier post; I found it at www.aakp.org/aakp-library/Exploring-Options/       It was in a section called "Exploring My Options:  Choosing or Changing Therapies", and was in the peritoneal dialysis writeup; obviously, it was used to make a case for choosing peritoneal dialysis over hemo, but I would think the basic wisdom extends to retaining ANY residual kidney function.

"The preservation of kidney function has been shown to be extremely important because the contributions from the natural kidneys are more important than the contributions of any dialytic therapy to survive.  Aside from toxin and fluid removal, the kidneys provide many other benefits including natural vitamin D, erythropoietin and other regulatory factors that contribute to steady maintenance.  Residual renal function reduces many complications of renal failure including cardiovascular disease, bond disease and anemia.  There is a direct correlation between the amount of residual renal function, survival and quality of life."

[Black]

I got that same argument from the charge nurse today, kit, when I stated my objections to using dye.  No doctor in sight, of course, so I get to try again on Tuesday, when he will be there.  *sigh*

The nurse told me I didn't sound like I trusted the doctors and nurses much.  She looked offended when I snapped back with "Of course I don't!"  If I'd trusted all of my doctors, I'd be dead already.

Unfortunately that applies to many of us here.  If that offends the good medical professionals, too bad.   Until I find out they're not one of the idiots, everything they tell me will be assumed to be wrong, and even after I figure out that they're one of best, I'll still double check everything they tell me.  It is true that the medical community buries many of their mistakes, and much of the rest covers for them.  The ones they don't bury still suffer the consequences.  OK, I'll get off my soapbox now. 

I hope everything went well for you today and they decided not to use the dye.

[jbeany]

I hope everything went well for you today and they decided not to use the dye.

No such luck.  Apparently, I've been fighting a losing battle.  The best they can do for me is limit the amount of dye.  That's something, at least.  Thankfully, I have dialysis the next day, so what dye they do use won't be in my system for long.

I got into it with the woman who scheduled the appointment without any notice.  She got all huffy when I objected to the lack of notice.  I got the distinctive impression that the next appointment she has to schedule for me will be done exactly the same way.  Ah, well, if she wants to waste her time rescheduling things, that's fine by me.  (Can you say "passive-aggressive"?  )

[scyankee]

Sorry you have had so much trouble jbeany!
I was also "scheduled" for a fistulagram months ago when I first started dialysis and when I found out that they would be
using dye, I REFUSED.  Good thing!  I am preserving as much kidney function as I can (I only dialyize 2 days a week). Lord
knows what would have happened.  I can't seem to make them (doctors/staff) understand that after 14 months I still
have ALOT of pain during dialysis in my arm.  I've heard about the doppler ultrasound but have they??
As_h__les. Good luck to you!