question and urgent request to those doing extended dialysis using NxStage

[amanda100wilson]

several months ago I switched dialysis units as I want to do extended dialysis.
my medical reason for doing this is that I have left ventricular hypertrophy
(LVH). it had all been agreed that I could do it. the other week, I went to an
open house for a. new clinic that my doctor was opening. corporate DSI were
there and I met them and talked to them. this is where there was a turnaround.
the Redsense detector request was denied, and the heparin pump was inexplicably
denied.

my nurse has been dealing with the Home Program Manager who haf agreed with the
extended dialysis. However, all of a sudden, she finds out that someone higher
in the chain is making decisions about this, and at this level (I believe that
she is one down from the CEO) as either her and/or the CEO has called a halt to
my doing extended. allegedly, the purchasing manager had questioned the
purchase of the heparin pump, because of its cost. my nurse said that it is not
to do with the cost of such items, but rsther that they are not willing to
accept liability. my understanding is that the doctor signs it off label, and
that the liability rests with him

they are having an advisory board meeting about it. my doctor is pn the
advisory board but I am hoping thst they will let me attend to put my case to
them.

my nurse wants to contact any doctors who are running extended programs. i
would be extremely grateful if you could provide me with the mame and contact
details of your doctors, clinic and contact numbers for them.

also, can you advise me on the legality of this?

i am really upset. I gave up an afternoon of my tie to attend the Open House
and talk about NxStage, and I am pretty sure that there is a link with this,
since it has all happened since then, and started to happen ver soon after. i
wonder if there is a little more at play here than what they are claiming, and
certainly hope that this isn't just a personal issue relating to when they met
me.

thanks in advance for your replies.

Amanda

[lmunchkin]

Darn, Amanda, wish I could help.  Have no clue.   Somebody hear, should have an answer!  Im going to try this one night.  Im not going to ask anybody, just try it, and if it works, then I will ask about it.

Good luck!

[SugarBear]

Hi Amanda, I have a few questions.  Why does the nurse want to contact other doctors running extend programs?  Also, why do you need a heparin pump, the NxStage machine is designed to be used without it.   Is it for medical reasons?

[amanda100wilson]

my nephrologist  wants to contact othe doctors doing extended programs because he lacks experience with extended dialysis.  extended dialysis uses a different cartridge and is intended to have a heparin pump connected it.  extended runs at a BFR of 200-250 and my aim is ti run for 7-8 hours.

[SugarBear]

I can only speak of the programs I and others I know have been involved in while doing nocturnal/extended.  In my clinic, I was one of eleven patients doing nocturnal for an average of eight hours a night and none of us used a heparin pump.  The heparin pump was my first question as I had been an in-center self care patient and thought I knew what was need.  I was told a heparin pump was not an option for anyone mostly because of the cost, but also from the clinics experience it was not necessary.  It turn out this is true for other patients when I start to check out other programs in New York City, which luckily has a few of them.

I ran for eight hours a night at a BFR of 280, using the whole 60 liter bag of PureFlow with only a bolus of 8,000 units of heparin.  1,000 units of heparin an hour was my prescription but they vary so yours may be different. 

I end nocturnal dialysis in March after nine months when I received my transplant, but I stay in touch with my old unit. So on Monday I will call my HHD nurse and ask if it is acceptable to forward their information to you and your doctor.  I do not foresee it being a problem but I rather err on the side of caution and ask before giving you their contact information. 

I do hope they can help your team and figure out what is best for your needs, I cannot speak highly enough about nocturnal/extended dialysis.  It was the best modality option i had used in my six years of treatments.

[amanda100wilson]

 :2thumbsup;thanks, Sugarbear.

[fearless]

hi Amanda, God I admire your fortitude.  I'm giving up on the home hemo "semi-extended".  In a couple months I'm switching to in-center nocturnal.
I sincerely hope that you catch a break with this.  I think you are doing something for yourself that is actually something that is part of making things better for ALL dialysis patients.  I'm so sorry you're hitting these walls.  I support you and will be sending prayers.