Nocturnal on NxStage

[terry3004]

I am wondering if anyone is doing a nocturnal treatment using the NxStage machine?  I consulted my clinic about changing to nocturnal and was told that I could do nocturnal if I wanted to, but my parter would have to stay up to monitor me and take the readings every 30 minutes (My wife definitely wouldn't go for that!!)

If anyone is doing nocturnal, how are you doing it?  How are you getting your in-treatment readings?  Does someone have to stay with you awake?

Thanks!!

[Bill Peckham]

I am wondering if anyone is doing a nocturnal treatment using the NxStage machine?  I consulted my clinic about changing to nocturnal and was told that I could do nocturnal if I wanted to, but my parter would have to stay up to monitor me and take the readings every 30 minutes (My wife definitely wouldn't go for that!!)

If anyone is doing nocturnal, how are you doing it?  How are you getting your in-treatment readings?  Does someone have to stay with you awake?

Thanks!!

I'm doing "extended" treatments on the NxStage. The FDA may consider "nocturnal" dialysis a distinct modality, so the preferred term is extended.

I live alone and self dialyze five nights a week. Sleep in the reclining chair. Taking pressures every 30 minutes is crazy, I take pre and posts. For incenter nocturnal they don't even do that, thank god. The whole point of doing long extended treatments, frequently is that there are no great fluid shifts. BP checks every 30 minutes is a bizarre requirement.

"Um yeah ... ah sure we do BP checks all night long ... Just like you said ... Every 30 minutes ... In between the BP checks my spouse holds a mirror to my face in one hand to make sure I am breathing and has the phone in the other hand poised to press the 911 speed dial."

Crazy.

[kidney4traci]

  You tell 'em Bill!!!!!!!!!!!!!!!

[jbeany]

Go Bill!

Terry, whoever is answering your questions at the center is clearly uninformed!

[Roadrunner]

The Rubin Dialysis in NY offers Nocturnal Hemodialysis and monitors the patients remotely.  It can be done.  This center also offers the NxStage but not nocturnal.  Maybe that is coming.  Their web site is http://www.rubindialysis.org/hometherapyoptions.html
Scroll down the page.  You can probably email them to see if they have any plans of doing NxStage nocturnally.

Daily Nocturnal Hemodialysis (DNHD) is a realistic and effective way to do more dialysis, to allow patients to control their own treatments and to regain control of their own lives. Since 1998, the Rubin Dialysis Center has offered chronic kidney failure patients the opportunity to be hemodialyzed at home, at night, while they sleep. Our DNHD patients are dialyzed 6 nights a week, for 7-8 hours per night. While they sleep, they are remotely monitored over the Internet by specially trained technicians at our Saratoga Springs Center.

[Rerun]

My incenter nocturnal is three nights a week for 8 hours each night.  BP is taken once an hour.  I'm not an expert on the subject as tonight is only my second night.


                           

[Roadrunner]

I found another center in NYC that does nocturnal HOME hemodialysis.  They monitor you remotely also.  This might be the coming thing.

Check out
http://www.rogosin.org/hemodialysis.html

[Bill Peckham]

The Rubin Dialysis in NY offers Nocturnal Hemodialysis and monitors the patients remotely.  It can be done.  This center also offers the NxStage but not nocturnal.  Maybe that is coming.  Their web site is http://www.rubindialysis.org/hometherapyoptions.html
Scroll down the page.  You can probably email them to see if they have any plans of doing NxStage nocturnally.

Daily Nocturnal Hemodialysis (DNHD) is a realistic and effective way to do more dialysis, to allow patients to control their own treatments and to regain control of their own lives. Since 1998, the Rubin Dialysis Center has offered chronic kidney failure patients the opportunity to be hemodialyzed at home, at night, while they sleep. Our DNHD patients are dialyzed 6 nights a week, for 7-8 hours per night. While they sleep, they are remotely monitored over the Internet by specially trained technicians at our Saratoga Springs Center.

In the history of remote monitoring has it ever prevented something bad from happening? What, but for the remote monitoring service, would have happened?  My provider has me signed up with LifeAlert through ADT so that I have the one button help request. I feel like it is money down the drain - but when my mom got wind that NKC was asking me to sign up for this but I was fighting it because of the point of the matter she just said she'd pay for it.

Now it just sits there and I can not think of a scenario where I would need help and still be able to push the ADT button, but not be able to push the speed dial to 911. In both cases if I was not able to communicate after pressing the button the fire department/police would be sent. It seems to me the monitoring is an extra layer.

[mark m]

I talked with my nurse today about going to nocturnal (extended) on the Nxstage, I have been at home for 2 mo. and trained in the clinic for 6 weeks. I was told that I have to have to have 3 mo. under my belt then I can join a study. I am looking forward to this as I work during the day and feel like I will have more free time. I was told that I would have to do 6 total blood pressures, I guess this would include start up and take off sitting and standing pressures. Running the machine at a slow speed for a long time is supposed to be better for you so I am going to give it a shot. I hope I can sleep...

-Mark.   

[Roadrunner]

... I can not think of a scenario where I would need help and still be able to push the ADT button, but not be able to push the speed dial to 911. In both cases if I was not able to communicate after pressing the button the fire department/police would be sent. It seems to me the monitoring is an extra layer.

This is not a remote that you use to call for help.  They remotely computer monitor your machine.  If any warnings go off and you don't attend to them, they first call you to wake you up, if you don't answer they call 911.  If it shows your are bleeding or the pressures drop drastically they call 911.

[Bill Peckham]

This is not a remote that you use to call for help.  They remotely computer monitor your machine.  If any warnings go off and you don't attend to them, they first call you to wake you up, if you don't answer they call 911.  If it shows your are bleeding or the pressures drop drastically they call 911.

Right - has that ever happened? has the monitoring resulted in 911 being called? Has monitoring ever made a difference? The one story I've heard is that the alarms were unattended. 911 was called. The door was kicked in. The guy was just very asleep. Would that be counted as a success?

Do you know of a time when monitoring has helped?

[Bill Peckham]

I talked with my nurse today about going to nocturnal (extended) on the Nxstage, I have been at home for 2 mo. and trained in the clinic for 6 weeks. I was told that I have to have to have 3 mo. under my belt then I can join a study. I am looking forward to this as I work during the day and feel like I will have more free time. I was told that I would have to do 6 total blood pressures, I guess this would include start up and take off sitting and standing pressures. Running the machine at a slow speed for a long time is supposed to be better for you so I am going to give it a shot. I hope I can sleep...

I hope you can sleep Mark. It took me about four runs to sleep soundly. And you are right that it frees up time - you can set up the machine any time after work and then get off in the morning in time to start your day. I haven't had my evenings free for a long time - its very nice. I don't have to start a stop watch as soon as I leave work, I can take my time.

Two sets of BPs to start the treatment and one set at the end doesn't seem unreasonable. It's the idea of having to interrupt sleep to take pressures that makes no sense.

[Roadrunner]

This is not a remote that you use to call for help.  They remotely computer monitor your machine.  If any warnings go off and you don't attend to them, they first call you to wake you up, if you don't answer they call 911.  If it shows your are bleeding or the pressures drop drastically they call 911.

Right - has that ever happened? has the monitoring resulted in 911 being called? Has monitoring ever made a difference? The one story I've heard is that the alarms were unattended. 911 was called. The door was kicked in. The guy was just very asleep. Would that be counted as a success?

Do you know of a time when monitoring has helped?

I don't have the answers to your questions.  I know I would sleep better if I thought monitoring was in place.
 
In the story you tell, Isn't that what the monitoring is for?  When someone sleeps through the alarms help was contacted.  The system worked.    If they didn't respond and the person was bleeding or had some other emergency everyone would be very upset at the lack of response.

When I delivered Meals on Wheels we had to call the home if no one answered the door.  If they still didn't answer we would call the main center and they would call their "Call in emergency" contact.  If they didn't know why they weren't answering the police would be called.  There were times that the person decided to go to the store or visit a neighbor, BUT there were enough times that someone fell or had a stroke or worse was dead. 

There will always be false alarms.  I know I would feel better knowing I was monitored.  And like everything it depends who is on the other end of the line.

[mark m]

I just signed up! I will be starting the end of June. 

[jbeany]

Let us know how it goes, Mark.   

[Bill Peckham]

I hope it fits as well with your life as nocturnal extended treatments fits with mine.

[migaguiar]

I'm in nocturnal training. I had 2 months of stable treatments so will start the actual training for it next week. 2 days 8hours.
I made sure i asked all the questions before i started. this is what i have been told.

No Bp's while i sleep. It is done remotely through wireless internet. I havent been told if i would get a call if it drops but i do remember them saying 24hr monitoring.
if your connections come undone for whatever reason NxStage diaylyzer will alarm before your pressure would even go down.
The machine is running at a really slow speed because its spread through 8 hrs.....I will run at 200.
You just have to train yourself to wake up immediately and look for disconnections or clamp then look so you wouldnt lose blood.
At that rate you probably wouldnt cramp either because the water in tissue and cells can transfer over into the bloodstream faster then water is being pulled out.
Ive been told there is more worry about me kinking or twisting the lines than anything and that too would have an alarm before anything happens to you.
lastly and most importantly nocturnal is done alone in Europe. no partner. Well i cant say for every country in Europe but i assume most. Everyone generalizes when they say Europe.

My Dr. says the results are amazing. the step up is as large as the one from inclinic to home short daily.
I was told i would sleep better. I sleep really badly and its my firm belief that i can function better without food then without sleep.
So to me if that was the only advantage i would do it because lack of sleep does so much harm.

What is it they say...you can live 30 days without eating but cant live 4 days without sleeping.

Well, anyways, as i said in an earlier post i will let you guys know when i start and post all good and bad effects.

hope it helps.

[Bill Peckham]

The Toronto program supports unaccompanied nocturnal dialysis. Has for years.

[Roadrunner]

I'm in nocturnal training. I had 2 months of stable treatments so will start the actual training for it next week. 2 days 8hours.
I made sure i asked all the questions before i started. this is what i have been told.

I thought that when you did Nocturnal it was still 6 days a week.  I heard the argument that a normal kidney works 24 hours a day so doing 8 hours every night was more like normal kidneys than any other treatment.  Two days for 8 hours each is less than the 6 days for 3 hours each on the short NxStage. 

I would love it if my husband went on Nocturnal but he is afraid of the needles coming out.  It's his choice.

[jbeany]

Roadrunner, didn't he mean that the training was 2 days, for 8 hours, not the runs per week?

[Roadrunner]

Roadrunner, didn't he mean that the training was 2 days, for 8 hours, not the runs per week?

Oops!

[M3Riddler]

For information on Nocturnal with NxStage, check out   http://www.nxstageusers.com/forum/forumdisplay.php?f=14 Here from actual people who are on nocturnal.

HH