Switching to Nocturnal

[Nicolefish18]

I recently started back on dialysis about a month ago and have been stuck doing a M,W,F schedule.  I work during the day from 8-5 so on those days I leave around 1 as I have a 2pm start time.  I am a single mother with limited help.  Mu son just turned 11 and school starts back soon so I really need my 40 hours in at work to provide for us.  I thought Nocturnal was what I wanted but now I am not sure.  It seems like soooo much time to be there.  I want the time of day just not the commitment to the time.  I just don't understand why they can't work with you more.  I am 28 a single parent, am I suppose to work 9 hours to go straight to dialysis and put in another 8 hours?  When am I suppose to see my son?  I know some people think well it is only three days a week but for how long.  I can be doing this for years as most of you know.  I just feel like I have sacrificed so much already why can't some things just be a little bit easier.  Why can't they fit it into my lifestyle?  I guess I am just feeling really hopeless about all of this. 

[Simon Dog]

In-center nocturnal is generally fit in around an existing schedule using the same machines, with first shift on times typically starting at about 6:30 +/-.   This means early to bed early to rise for those doing in-center nocturnal, with very limited ability to fit it into patient lifestyles.

[iolaire]

Congratulations on continuing to work, I'm glad that your work has been able to work with your schedule. 

From what I've read I doubt any nocturnal would be helpful since its at night when it would be difficult to setup child care.  Even the shorter nocturnal schedules are at  odd/bad times.

Is dialysis at home and option?  That seems to be the only way you can really control your schedule, but you give up the convenience of in center treatments.  Also given your need to work/care for your child, can you work with your center to get higher priority to move to a better shift for you - either something later on MWF or T TR S so you have an extra full work day per week?

[Nicolefish18]

I have someone to watch my son during dialysis.  I just don't want to commit to such a long time frame.  I don't want to dialyzes for 8 hours.  I would be more happy with 6 but from the sounds of my clinic they aren't willing to compromise. 

I did home hemo last time I did dialysis and I found that even more time consuming.  Plus I don't think my apartment complex would allow it.  My son is getting older and I really don't want this to be part of his normal day to day.  I just wanted to go in clinic and go home.  It hurts him seeing me sick, I am all he has so I don't want that added stress on him.

I just feel really discouraged about dialysis right now.  I can live with this being my life I am just frustrated that they don't even try to work with you.

[Simon Dog]

the convenience of in center treatments

Oxymoron alert!!!

Plus I don't think my apartment complex would allow it.

Your other reasons are valid, but there is no need for "permission" to set up a NxStage machine as it uses standard power, and can use a sink hookup that does not require any plumbing changes.    If an apartment tried to ban NxStage, I suspect the NxStage legal counsel would be glad to have a friendly chat about ADA compliance.

[Nicolefish18]

So I checked into different clinics and Davita is willing to let me do a 6 hour run.  I emailed my social worker and asked her to send my medical records to them.  Next thing you know I got a call from her and the nurse manager saying the re-talked it over with the doctor and I can do 6 hours!  Sunday will be my first day!

Plus I don't think my apartment complex would allow it.

Your other reasons are valid, but there is no need for "permission" to set up a NxStage machine as it uses standard power, and can use a sink hookup that does not require any plumbing changes.    If an apartment tried to ban NxStage, I suspect the NxStage legal counsel would be glad to have a friendly chat about ADA compliance.
[/quote]

To be honest I don't know much about the NxStage.  When I did home hemo I had to make plumbing changes and had like a regular machine and RO machine.  I just remember it using so much water.  My dad had put what looked like a washer hookup in my wall.  It was a lot of work. 

[iolaire]

So I checked into different clinics and Davita is willing to let me do a 6 hour run.  I emailed my social worker and asked her to send my medical records to them.  Next thing you know I got a call from her and the nurse manager saying the re-talked it over with the doctor and I can do 6 hours!  Sunday will be my first day!

congratulations!

[Vt Big Rig]

So I checked into different clinics and Davita is willing to let me do a 6 hour run.  I emailed my social worker and asked her to send my medical records to them.  Next thing you know I got a call from her and the nurse manager saying the re-talked it over with the doctor and I can do 6 hours!  Sunday will be my first day!

I am happy for you . But imagine that. You threatened to take your business elsewhere and all of a sudden they can accomodate you. Isn't that amazing!!!!

[Nicolefish18]

I am happy for you . But imagine that. You threatened to take your business elsewhere and all of a sudden they can accomodate you. Isn't that amazing!!!!
[/quote]

Thanks!  Isn't that the sad truth.  I have commercial insurance hahaha I sorta had a feeling it was going to play out the way it did.  I just wished they saw it for what it really was though.  I have a young son at home and I am just trying to be the best parent I can, work and take care of myself.  It is a lot to juggle and they could help a little too.  It isn't black and white. 

[Nicolefish18]

congratulations!
[/quote]

THANKS!!!!!!!!

[Simon Dog]

The only way I got the folks at my clinic to move on nocturnal was to ask "If I switch to the NxStage clinic a few towns over, would you take me back as a patient once you offer home nocturnal?".    The doc got back to me with "competition is a wonderful thing - we will make it happen".   I have the equipment and training, care partner training is happening at the end of the month then I switch to nocturnal.   I'm already on the home/NxStage protocol, but the RN requires some additional training for my partner.

To be honest I don't know much about the NxStage.  When I did home hemo I had to make plumbing changes and had like a regular machine and RO machine.  I just remember it using so much water.  My dad had put what looked like a washer hookup in my wall.  It was a lot of work. 

I did that for a while before I went to NxStage.  The conventional (probably Baby K) machine requires a dedicated 20A GCI circuit, and much more water/drain flow (less practical to hook up to a bathroom sink).   The NxStage uses a standard household 15A circuit and can get water from a sink faucet - and would easily work in an apartment.   The in-wall water supply the FMC plumber hooked up for me to use with the Baby K is a really nice convenience since I don't have to run water and drain lines down the hall.

[Ontarian]

HI, I am in Ontario Canada and when we talk about nocturnal dialysis it is in our home. Then you can set your own time. I worked when I was on nocturnal about 10 years ago and I found it very flexible. I had a transplant since which also failed and I have been on dialysis again now for about 7 years. We are talking now of going back to nocturnal dialysis, which again is at home.

Cheers

[Nicolefish18]

I am really liking nocturnal in the clinic.  I am just having a hard time adjusting to waking up in the morning and going to work. I am getting home around 3am and am just exhausted in the morning.  My work has been accommodating but negative as well.  I feel like I just need time to transition and get my body use to it that schedule.  My manager is waiting for me to fail and I refuse even if I have to take a cat nap in the bathroom. I think I am going to ask my clinic if I can start right after work that way I would be off the machine maybe around midnight.  I think my son will understand it would only be Tuesday and Thursday he really wouldn't see me.  Ugh...the joys of dialysis!

[PrimeTimer]

In-center nocturnal is generally fit in around an existing schedule using the same machines, with first shift on times typically starting at about 6:30 +/-.   This means early to bed early to rise for those doing in-center nocturnal, with very limited ability to fit it into patient lifestyles.

Simon Dog:  Just wanted to say good luck on your switch to home nocturnal! Didn't know where else to post this but remembered you saying you were starting soon. Hope you will have good news to share when the time comes. 

[Simon Dog]

First nocturnal treatment sucked - got ZERO sleep listening to the machine and worrying about the alarm.   Just finished the second one - worked great, slept well, working up in the early AM hearing the machine still humming (no alarms).

The NxStage and Redsense alarms aren't loud enough to reliably wake me, so I had a custom alarm made that optically picks up on the red warning lights and turns on a door buzzer under my pillow.   Works great at getting my attention.

NxStage users doing nocturnal should look at machine settings 42 (turns off the #5 UF complete warning), and 35/36/37 (configure machine to dim display after 5 minutes of no errors or data input).

[PrimeTimer]

Whether it is doing nocturnal at a center or at home, I am just amazed at all of you who do it not just for your health but to actually make more time for working a job and being with your families. You deserve a heck of a lot of admiration and RESPECT!

[PrimeTimer]

First nocturnal treatment sucked - got ZERO sleep listening to the machine and worrying about the alarm.   Just finished the second one - worked great, slept well, working up in the early AM hearing the machine still humming (no alarms).

The NxStage and Redsense alarms aren't loud enough to reliably wake me, so I had a custom alarm made that optically picks up on the red warning lights and turns on a door buzzer under my pillow.   Works great at getting my attention.

NxStage users doing nocturnal should look at machine settings 42 (turns off the #5 UF complete warning), and 35/36/37 (configure machine to dim display after 5 minutes of no errors or data input).

As we head into the holiday season (with lots to do, EAT and enjoy), hope you are getting more sleep now and good labs!