Nocturnal dissapointment

[Adam_W]

Almost since I started home dialysis, I've wanted to do it at night. I had, and still have, the option of switching to NHHD, but I would have to use a conventional machine. I simply don't have space for all the additional supplies, and I can't afford the electric and plumbing changes needed to use a full-sized machine. For the last year or so, I've always been hearing from my nurses, "Just a few more months until the FDA approves nocturnal on NxStage", well, I talked to my nephrologist today about it, and she said absolutely NOTHING is being done, and the FDA probably will never approve NxStage for nocturnal because it is so different from conventional hemodialysis. I don't know who's right, my neph, or my nurses. I'm beginning to think my neph is correct. I know some patients are doing "extended treatments", but my doctor won't prescribe it and Duh-Vita won't let me do it. So for the foreseeable future, since PD won't work for me, it looks like it's either in-centre, or short-daily. I won't return to in-centre, so it looks like I'm stuck with short daily, even though I know that nocturnal is better. It's frustrating when I seriously can't select the type of treatment that I know would be best for me.

Adam 

[okarol]

That sucks Adam. Is nocturnal available in-center? I know you don't want to be there, but perhaps it would be a different experience.
I'm sorry but I cannot recall - why are you not waitlisted?
Sending you hugs 

[Bill Peckham]

No machine is approved by the FDA to provide nocturnal dialysis. If they have a nocturnal program using another machine but won't do it with the cycler that makes even less sense then usual.

It was only very recently that the FDA has began to think of nocturnal as a separate indication. When does a treatment become nocturnal? When the sun goes down? When the person falls asleep? At 5 hours? 6 Hours? A 7 hours and 59 minutes? What is the difference from the point of view of a medical device between a three hour dialysis treatment and a 4 hour dialysis treatment?

Sorry Adam but I really thought you could have vented a bit more. I really think they haven't thought this through and are badly misguided.

[Maggie and Jeff]

 

[twirl]

what is short daily?
noturnal is not coming to Conroe
I would love to try it.
the closet place is too far to drive
do you short daily at home

[petey]

Adam,
I hear your frustration, and Marvin and I are right there with you.  We've been asking, asking, asking for over a year about nocturnal home hemo (Marvin's been on home hemo for about 20 months).  We keep hearing, "Not yet.  It's not approved.  Maybe soon."  We hear this from his home hemo nurse and his nephrologists.  We just want to Grrrrrrr... every time we hear this response.

Marvin and I LOVE home hemo, but now that it (HHD) has improved Marvin's health so much, he's once again a busy, busy man every day.  We keep saying to each other, "If we could do this at night, it would be perfect -- perfect for our busy lifestyle and even more perfect for his overall health (with the extended treatments)."  But, we usually feel that the two of us are the only ones listening to us.  Frustrating!  We think NHHD would be so much better.  When will the medical community start listening and actually do what's best for the PATIENT ??

[Wallyz]

Adam- they are full of shit.  If you want to get some of the benefits of extended, you can do a slower six our session, and do a second smaller bolus of heparin at 3 hours.  Talk with your neph. but be pushy.  Give headaches.  Talk to other centers around.


Don't let their fear of change keep you from getting the therapy you need.

[pelagia]

What would actually be involved in going from short daily to nocturnal?  Does it require more supplies that have to be prescribed?  How frustrating to have the dinosaurs saying no.  They should be extinct by now.

[Wallyz]

The two changes are the cartridges (CAR 171's instead of CAR 170's)  and  a heparin pump. (Medfusion 2001 or 2010)   The big issue is the heparin pump.  They are $1200 refurbed.

You can do it without the pump by doing boluses ever few hours.

[Adam_W]

The idea of getting my own heparin pump and connecting it to the port on the dialyzer on the CAR 170 came to mind, but one, I cant afford a heparin pump, and two, I'm not THAT rebellious. I have done a few four hour treatments if I've missed two days in a row, and I just give myself a second bolus of heparin at two hours. I could probably be more pushy, but sometimes I think I'm too nice. I know sometimes one must push until they piss people off so much, they get what they want so they'll shut up  I think I need to practice pissing these people off who are stopping me from doing the treatment that I know will be best for me.

Adam

[cherpep]

Doesn't Canada allow nocturnal home hemo on NxStage?   Perhaps you can get a couple of members here to tell you their nephrologist that recommended it, and maybe you can get some facts from them to present to your neph?

[monrein]

We don't have Nxstage here in Canada but I think that it's possible to do nocturnal using the other machines that they provide for home hemo.  We do have some nocturnal in center programs but I believe they're generally three times per week.

[del]

nxstage is not available here in Canada or are there any plans to have it here.  Hubby does nocturnal at home using a Fresenius  2008H machine. We will be training for a new machine in the next year or so because the 2008H machine is obsolete.  It will still be a full size dialysis machine.  I really wish some company would develop a portable machine that we could use for nocturnal here in Canada.  In Newfoundland if you do nocturnal it has to be at home there is no in center nocturnal dialysis.