How do I get on Nocturnal Dialysis

[Dan.Larrabee]

When I read a post about Nocturnal and peoples struggle to get approval for it, I always get frustrated. I have some experience here so I will share it. In two weeks I will be celebrating my 2nd year anniversary of being on nocturnal. I feel very blessed that I have been able to do it, but the fact is I was my own advocate in getting nocturnal. I was very new to dialysis when I started doing nocturnal, only 7 months at home and I had only been in the center for only 5 weeks before that. I had a home hemo program that did not have nocturnal and said the famous “It’s not FDA approved”. Even my neph said PD was better and if I wanted better treatments I needed to switch. So I was just like anyone else, wanting to do nocturnal but did not know where to turn.

With some persistence, not only did I convince my doctor and clinic to allow me to be the first nocturnal patient at Liberty Dialysis of Salt Lake, but most everyone else in my clinic soon followed. Now a shocker, three months ago I was so upset at my clinic that I found a new clinic and got approved for nocturnal before I walked in the door. They had all the same excuses and said they did not support nocturnal on a companywide level. Now the shocker, the new clinic that approved me was DaVita. They had the policy and procedures written and a heparin pump waiting for me in just two weeks after asking. I ended up staying with Liberty, but that is a long story.

How did I do it?

The first thing you need to do is STOP using the word Nocturnal (it’s really the key). The better term to use is Extended Therapy. The difference it will make in you quest is huge. Even though there is no difference, all the stigma will go away. Extended Therapy is FDA approved with NxStage. When you clinic asked you when will you be doing your treatments, say whenever I can that’s the freedom of Home Hemo. Start with you Doc. Tell him or her that you want to improve your care. Tell them you want to be off all your blood pressure meds, that you don’t want to take binders anymore, that you want to eat and drink normally (unrestricted), that you want to better control your phosphorus and potassium and that you want to live longer. Tell them that you can achieve it with Extended Therapy using NxStage. Once you have your doctor’s approval you are 90% there. You doctor can order anything in your clinic. That’s the way I had it approved at DaVita. My neph talked to the clinic director after her license was approved for DaVita and she got it approved with the local clinic director at DaVita and I was on my way to everything I needed. This was the same way I got it approved with Liberty.

Don’t give up, don’t say oh well they don’t approve it, get your doc involved and keep at it. Don’t just tell you doc in your appointments and don’t just tell you clinic in your monthly visit. Let everyone know weekly that you want better care and to live longer. Don’t take no for an answer, do what it takes to get what you want. I wanted it bad enough to be with my family longer than statistic show. I believe the statistic show that with more frequent dialysis, Extended Therapy (aka Nocturnal) you can increase your mortality rate by about 50% and that is equal to transplant.

How bad do you want it?

Dialysis Dan
 

[MooseMom]

Ohhhh, I want it bad, and that's why I am going to do exactly what you have done.  Semantic are important, and that's great advice...say "extended" rather than "nocturnal".  I'm not on dialysis yet, but I've already contacted my clinic about doing "extended" with NxStage, and they've told me that they would certainly support me.  Just knowing that I won't have to fight that particular battle will make my transition onto dialysis less emotionally devastating.

Thanks for the tips and for sharing your experiences. 

[tyefly]

Dan    I too ran into many road blocks.... took me 8 months and a doctor who pushed the clinic.... I have now been doing Extended for three months..... and Loving every sleepy minute....

[kitkatz]

I walked into see my neph and asked to do nocturnal and named the clinic.  He walked down to the person to okay it.  It was approved in five minutes or less.   I saw him on a Thursday and went to nocturnal clinic on Monday.

[tyefly]

Seems like it is pretty easy to get into nocturnal at the clinic....  Seems like around my area  there are many opening...  I cant understand why more people dont go for this type of dialysis....  its the Nxstage nocturnal/extended that seems to take forever and a day to get them to approve....

[MooseMom]

The closest clinic to me that offers incenter nocturnal is over 30 miles away in another county.   I would love to find a clinic closeby that would let me self-cannulate and dialyze inclinic at night.  I know that NxStage offers great clinical results and also has the advantage of being home based, but sometimes I think I'd like to not have to always carry the load all by myself.  It would be nice to have someone watch over me while I slept and dialyzed.  Sometimes I get really tired of doing everything alone.

[noahvale]

^

[tyefly]

Well Noahvale..... I hope DaVita doesnt screw my nocturnal /extended Nxstage experience up when they take over my DSI clinic this summer.... Sometimes when managment changes  there are many changes....  I hope that is not one of them..... I do not want to go back to days and sit for all those hours....

[MooseMom]

OK, let's start from the beginning of the hypothetical conversation I will have with my neph.  BTW, I already know that the clinic of which he is the head will support me in doing "extended" with NxStage.

Let's say that the time to start dialysis is very soon, and I've already decided that I want to do nocturnal home hemo with NxStage.  I've done my homework and understand the benefits of this modality, and I want to have a glass of milk and a bowl of lentil soup without worrying that it's going to kill me.  I tell my doctor this, and I am careful to use the word "extended" instead of "nocturnal", knowing full well that I want to eventually be able to sleep for a full 8 hours while dialyzing.  Six hours is just not enough sleep for me.

So, what exactly do I say to my neph?  How does he calculate how many hours I should dialyze for how many nights a week?  Do you start out with so many hours for, say, three nights a week and then increase the time on D from there, looking to your labs for guidance?  Or do you try to get the neph to let you have as much dialysis as you can possibly get (my ins co will pay for whatever the neph orders)?

How does one surreptitiously ask for "extended" when what you really want is "nocturnal"?

[Annig83]

I am a bit confused...  I am new to dialysis, I started in Late May. When you say nocturnal dialysis, do you mean CCPD (a machine at night)?  That is what I do with a Liberty machine.  I hook up for 8-9 hours during the night through the cath. in my belly.  I didn't realize it was so difficult to get on?  My doctor reccommended it?!  (That is if we are talking about the same thing?).  Just curious.

[MooseMom]

I am a bit confused...  I am new to dialysis, I started in Late May. When you say nocturnal dialysis, do you mean CCPD (a machine at night)?  That is what I do with a Liberty machine.  I hook up for 8-9 hours during the night through the cath. in my belly.  I didn't realize it was so difficult to get on?  My doctor reccommended it?!  (That is if we are talking about the same thing?).  Just curious.

Sorry...no wonder you are confused.  Usually, when people talk about "nocturnal", they're talking about hemodialysis, not peritoneal.  Not a lot of clinics offer it, especially done in a home setting.  But the dialysis modality you use (CCPD) is certainly popular with plenty of patients.

[lmunchkin]

MM, have they given you a time frame or an estimate of when you may need to start D?  I know you are dotting your "i's" and crossing your "t's" before you start, and you will be so glad that you did when the time comes!  Arming  yourself before hand is so very wise!

lmunchkin     

[Annig83]

@ MooseMom-  Gotcha!  Thanks for clearing that up!

[mcclane]

i'm currently doing home hemo.  When my doctor told me that pd no longer was working, he said your only alternative was hemo.  However, he knew that i was still working full time plus led an active lifestyle, so he immediately got me in touch with the home hemo unit.  they trained me on everything, from the setup on the machine (plus tear down), and how to connect to the cvc.