First Real Frustrations

[JScott1753]

  As strange as it may seem, I don't really have a huge problem with doing dialysis. Maybe I'm weird; it is a hassle going three times a week, but I don't really get sick from it, aside from my blood pressure getting low after treatments. I guess I have just adjusted pretty well.
  But lately, things have gotten really strange, and I am getting frustrated(finally?).
  First of all, my phosporus just went to over nine(from five point something!). And, this last Monday, I went through a third fistulagram(the last two within three weeks). Then they say I have some sort of "recycling" problem which means that yesterday I started doing four hours instead of three.
  And if that wasn't bad enough, I have techs who don't know how to do my buttonhole, or at least they don't seem able to understand when I say,"the two puncture sites are in a straight line" or "this one goes in at a shallow angle, and the other more straight up." And why do they always try to put the needle in through the side of the vein instead of on top?
  And then, when the blunt needle is trying to go into my bicep instead of my vein, and I am squrming in the chair, the nice nurse looks at me and asks,"does that hurt?"   
  So, I guess compared to other people, I don't have a lot to gripe about, but it has been hard to handle lately.
  Still hanging in there,
  Jon

[monrein]

Sorry that things are starting to get tricky Jon and I hope the fistulagram will help to sort things out. 

Your recirculating problem might be due to your sites being too close together so that some of the same blood is being drawn into the arterial as it gets emptied from the venous but four hours three times a week is a pretty standard thing in the US as far as in-center goes.  I do five days a week and get better clearances as a result and also less feeling crappy.

Have you considered doing your own needling?  You will have much better consistency, can stop if things don't feel quite right and best of all, no need to keep trying to explain things to techs who have no idea what you're talking about.  I do all my own needles, including the establishment of the buttonholes, and would have it no other way.   You sound very well suited to do this yourself.

As for the phosphorus, are you taking your binders faithfully?  Are you avoiding the higher phosphorus foods while making sure you're getting enough protein?  You definitely want to get the phosphorus under control so this becomes a priority to find out what to avoid and what to choose instead.

Keep us updated on how things go and I wish you luck.   

[del]

Buttonholes are not supposed to hurt that much. the tech should know that if it is hurting like that they are not doing it right!!  Have you ever tried sticking yourself?  Hubby is on home nocturnal dialysis ans I usually o the sticking but he has no problems putting the needles in himself.  Has your diet changed in any way to make the phos level go up? It doesn't take much of a change to make the phos go up.  Do you have a list of foods that are high in phos? Have they prescribed binders for you?

Hubby has never had a problem with hemo either. He was very rarely sick and didn't even have the blood pressure issues very often.  It was much more of a hassle for him just going to the unit - it was over an hours drive from us!! On nocturnal he just hooks up when we are ready to go to bed and he is finished in the morning. No schedules to follow and no travelling in all sorts of weather in the winter!!!

[breezysummerday]

My s/o (the one on dialysis) used to be so polite and accomodating--AT FIRST--
After the 3rd infiltration, his wrist got big and he had a rough time at work.
He is a Chef.
So, no more Mr. Nice Guy.  

[2_DallasCowboys]

Hi,

I would suggest you sit with the dietician at your unit
and discuss your eating habits.  Also, the binders - maybe
you need to talk to neph about those #'s andhe/she will
either have you take additional binders, or change out the
script for something different.

As far as the sticking, start letting them know you are not
a pincussion and that is your lifeline they are playing with, you
want it done correctly  (I would NOT be polite about it, either-
it is YOUR BODY and you should want them to be very careful
of what they are doing to it)

Wishing you the best,

Anne

[twirl]

I am sorry and I know it will get better

[Joe Paul]

It was my understanding, that 1 person should be doing the buttonholes. As Del said, maybe they will let you stick yourself? I would question your pth level, (sends phos and calcium out of whack)  if all the sudden your numbers jump like they have. Sometimes the Doctors ignore the obvious.

[Wenchie58]

  Feeling sorry for your frustrations.  Keep your chin up and demand to be
treated YOUR way!  Fighting with diet is a tricky thing, but track it well and
it will become second nature.  Best of luck!

[peleroja]

Can't speak to all the other stuff, Jon, but have you started eating something that contains a lot of (perhaps hidden) phosphorus?  Since phosphorus doesn't have to be listed on the nutritional contents, you may accidentally be adding more to your diet than you realize. 

[jbeany]

If your diet hasn't changed, then you might want to ask them to run a PTH test.  My phos skyrocketed when my PTH started to go up, and nothing I did with my diet seemed to help.