Back in Center after 3+ years on NxStage...need the Bicarb

Discussions for Patients, Family, and Friends HD For Patients
1

Hi all,
I had just returned to center to give my wife and partner a break after about 13 years at home.

I had started NxStage in December 2006 after 3 years on the Aksys PHD (*now my ‘dream machine’)
After 6 months on the NxStage, my health went downhill very fast…I didn’t know what was going on …we suspected
everything in the world 30 years of dialysis, deterioration from juvenile diabetes, pain around the clock, joints, ribs, whatever I had hurt…

So after about 2 weeks in Center I started noticing less pain…believe me I was not the only one…my wife knew right away that I was feeling better…‘the bear had left the building’ and crankiness was in remission.
Now after almost 3 months I’m feeling better than I have in the last 3+ years. Obviously it’s not because I went from 6 treatments a week to 3. The only other difference is the bicarb which I had always been on before NxStage.
I’m not complaining about NxStage…I have really liked the ease of my home program and the daily dialysis all this time.
It seems my body could not tolerate the Lactate dialysate.
Anybody out there have anything similar?

I’m going to try to find a bicarb system I can ‘use’ at home with a septic system and return when I can to freedom.

Thanks,
A Traveler

2

The ESRD Conditions for Coverage under the Condition for Care at Home it states:

The facility must meet testing and other requirements of ANSI/AAMI RD52:2004. In addition, bacteriological and endotoxin testing must be performed on a quarterly, or more frequent basis as needed, to ensure that the water and dialysate are within the AAMI limits

The Interpretive Guidance (V595) for this section states:

C.3.2 Drain
If the home has a septic tank, the septic tank should be able to process the volume of water from a drain [that is one inch or larger in diameter]. It may not be possible to perform nocturnal hemodialysis in a home with a septic tank since this tank may not be able to support the volume of water delivered to it over an extended period (8 hours). Another possible limitation is that the septic system will be exposed to disinfectant chemicals (bleach, peracetic acid, hydrogen peroxide, etc.) which may kill the bacteria needed for the septic tank to function.

I’d suggest that you ask your home training nurse or the manufacturer of the company that makes the RO you want to use at home about the amount of water that will need to be processed during a home HD treatment and what disinfectant you can use, if any, with a septic tank.

3

Well, I am in the process of switching to nocturnal and never gave this a thought. We are on a septic. Thank you for sharing this.

4

Interesting. Lactate v Bicarb (and frequency) is not the only difference between conventional incenter and using the cycler. Dialysate flow rates are very different. It could be bicarb but I don’t think it would be my prime suspect.

My understanding is that the newer ROs have better rejection ratios - ideally there could be a water system that would deliver ultrapure water on demand without rejecting a large percentage of the incoming water - a DI system that could deliver at least 300ML/min or about a gallon every 12 or 13 minutes … about 6 gallons an hour of waste water. Septics would be able to handle that.

Another possibility is if FMC goes forward with some kind of sorbent system that would allow every other day nocturnal using very little water.

Nano approaches would use less dialysate and therefor water too.

Did you try changing the NxStage prescription while you were using the cycler? Changing dose via time or quantity of dialysate? What’s your incenter treatment prescription v when you were at home using NxStage?

5

I’d like to ask if there are nocturnal dialyzors that have a septic and if it has been a problem. I am planning on dialyzing 6-7 nights/week. After all of this, I sure hope the septic won’t be a problem!

6

Wendy the difference is the dialysate source. NxStage uses just 30L of fluid per treatment - less than 8 gallons. You’d use the same amount doing short or long with the NxStge, so if you’re ok now you’ll be ok running longer.

A standard machine not only uses a lot more dialysate but the water treatment system for a standard machine - the RO (Reverse Osmosis) - might use 10L of water to produce 1L of dialysate. So with a standard setup you use more dialysate and a lot more water, about 10 times more, to make that dialysate.

7

Thanks for the clarification, Bill. That’s very helpful.

8

Thats strange, but 6months on Nxstage at home seems a little… I do know that if your liver is not well you may not do well with Lactate dialysate. On the other hand, now that patients stay home doing dialysis less likely they will go out the house often for needs, so that means less exercise. Another thing is that frequent dialysis requires extra nutrition such as protein supplements and such and if that goes down then you will certainly go downward… I speculate it can be a combination of circumstances… For example, from 2004 - 2010 this summer was doing 6x per week, but seemed I was going downward too along with hypotension. Now, am doing 5x per week and looks like hypotension and down feeling is disapearing.

[QUOTE=A Traveler;19844]Hi all,
I had just returned to center to give my wife and partner a break after about 13 years at home.

I had started NxStage in December 2006 after 3 years on the Aksys PHD (*now my ‘dream machine’)
After 6 months on the NxStage, my health went downhill very fast…I didn’t know what was going on …we suspected
everything in the world 30 years of dialysis, deterioration from juvenile diabetes, pain around the clock, joints, ribs, whatever I had hurt…

So after about 2 weeks in Center I started noticing less pain…believe me I was not the only one…my wife knew right away that I was feeling better…‘the bear had left the building’ and crankiness was in remission.
Now after almost 3 months I’m feeling better than I have in the last 3+ years. Obviously it’s not because I went from 6 treatments a week to 3. The only other difference is the bicarb which I had always been on before NxStage.
I’m not complaining about NxStage…I have really liked the ease of my home program and the daily dialysis all this time.
It seems my body could not tolerate the Lactate dialysate.
Anybody out there have anything similar?

I’m going to try to find a bicarb system I can ‘use’ at home with a septic system and return when I can to freedom.

Thanks,
A Traveler[/QUOTE]

9

[QUOTE=A Traveler;19844]Hi all,
I had just returned to center to give my wife and partner a break after about 13 years at home.

I had started NxStage in December 2006 after 3 years on the Aksys PHD (*now my ‘dream machine’)
After 6 months on the NxStage, my health went downhill very fast…I didn’t know what was going on …we suspected
everything in the world 30 years of dialysis, deterioration from juvenile diabetes, pain around the clock, joints, ribs, whatever I had hurt…

So after about 2 weeks in Center I started noticing less pain…believe me I was not the only one…my wife knew right away that I was feeling better…‘the bear had left the building’ and crankiness was in remission.
Now after almost 3 months I’m feeling better than I have in the last 3+ years. Obviously it’s not because I went from 6 treatments a week to 3. The only other difference is the bicarb which I had always been on before NxStage.
I’m not complaining about NxStage…I have really liked the ease of my home program and the daily dialysis all this time.
It seems my body could not tolerate the Lactate dialysate.
Anybody out there have anything similar?

I’m going to try to find a bicarb system I can ‘use’ at home with a septic system and return when I can to freedom.

Thanks,
A Traveler[/QUOTE]

I have a somewhat similar experience with the NxStage machine.
Shortly after getting on it, painful to the touch lesions appeared all over my body but especially on the knees and the thighs.
Nobody was able to explain to me why they appeared all of a sudden.
Now I have pain in my joints and I literally walk like a very old man.

I have always suspected the NxStage machine but could not prove it short of going back to the center.

I asked the techs at NxStage over and over the simple question how and why would a low dialysate flow rate on the Nxstage equal three times it’s counter part on the in center machines.

All the studies I read on the web prove that the dialysate flow is the most determining factor affecting clearance.

So, I have decided to go back to the center in hope I can reverse the damage that took place in two years.

The Fresenius baby K is available for in-home treatment but it would take at least a month in my case to set it up in my house so in the meantime I’ll be going to the center.

Please wish me luck.

10

Could you have been allergic to the lactate dialysate or to the dialyzers NxStage uses?

Here’s a blog by Peter Laird about the NxStage and dialysis adequacy, including flow rates and more that might be helpful.
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/02/taking-nxstage-system-one-to-the-max.html

11

[QUOTE=Beth Witten MSW ACSW;23099]Could you have been allergic to the lactate dialysate or to the dialyzers NxStage uses?

Here’s a blog by Peter Laird about the NxStage and dialysis adequacy, including flow rates and more that might be helpful.
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/02/taking-nxstage-system-one-to-the-max.html[/QUOTE]

I may very well be allergic to the lactate but no doctors I have complained to, be it Nephrologists, dermatologists or allergists have ever heard of the NxStage machine or the use of lactate.

A young dermatologist relayed a piece of advice to me, he said “Get a kidney or a different machine!”

I’ll find out if the “new machine” will help.