Extended treatments on the NxStage

[Bill Peckham]

I dialyzed in my home training unit on Wednesday to get checked out on a heparin pump. This following the installation of a one button medic alert system installed on Tuesday from ADT. I am now approved to do "extended"* dialysis on the System One.

My plan is to try extended dialysis over night and see how it goes. If I can sleep then I may go ahead and do all extended dialysis (five or six nights a week). If I have trouble sleeping then I will try extended dialysis on Friday and Saturday night and unextended dialysis on weekdays. I might even try 45 liters of dialysate during extended runs and 20 liters of dialysate during non-extended runs.

I am temporarily on hold while I await my 171 cartridges. I hope do my first extended treatments around the winter solstice. Will extended dialysis foretell brighter days to come? - I will report my results.

* The System One is not FDA approved to be marketed as providing "nocturnal" dialysis, hence the less defined term "extended".

[jbeany]

Can you reset it so it doesn't do the self-check every half hour?  I think the change in noise level would wake me up more than anything else.

Good luck with this, and let us know how it goes - I don't think it would work well for me, but it's always good to have more options!

[Black]

Was the ADT required?  If so, who required it?

[Bill Peckham]

My unit required a medic alert service since I live alone. I chose ADT.

[Bajanne]

Though I cannot relate to this form of dialysis, it sounds so interesting.  Please continue to keep us posted on how it all goes.  Really fascinating.

[Adam_W]

I'm still waiting for my centre to allow "extended" dialysis. I thought I would get it a few months ago, but  my centre (Davita) decided to wait and do everything "nice and legal". Now I don't know when it will come. It's ok, though because I'm doing excellent on short-daily (kt/v was 2.94 last lab results). I'll just do "extended" when ever it comes. So far, I'm the only patient in my centre who wants it, and they already have my heparin pump waiting for me. I'm also going to be getting a Crit-Line monitor (for those who don't know, it basically monitors the fluid content of the blood, allowing you (or in-centre staff) to set the machine to remove how ever much fluid the monitor indicates, virtually eliminating crashing, and allowing more fluid that's still in the tissue to be taken off). Me, my nurse, and Hemametrics (the manufacturer of the Crit) are figuring out how we can use the Crit on nocturnal. Any experts out there on the Crit, feel free to correct any mistakes I may have made in describing it, I'm still very new to the concept.

Adam

[skyedogrocks]

I will definitely be curious as to how it goes for you.  How long are you planning to run during the night?  Rob's only concern is the needles, he's so scared of them falling out

Good Luck!

[Redbomb]

This past week I spoke to a guy that is doing the nightly hemo treatments.  He said he thought he felt excellent while on Daily, but how he feels now is even better!

To secure the needles, he uses a modified pantleg straps (the ones designed to hold your pantlegs against the skin while riding your bike).  He added a bit in Length, sewed in a couple of D Rings and some Velcro.  He takes these and secures his tubes to his arms and all goes well.  Oh, he also uses one of these for a tourniquet while inserting the needles as well as a holder for th gauze pad while removing the needles.  I'm on my way tomorrow to buy some of those and start modifying them!

[Bill Peckham]

I'm suppose to get my first shipment of 171 cartridges today so tonight may be my first extended run.

[Black]

  Hope it goes well.

[okarol]

  Good luck!

[Black]

How's it going, Bill?

(Off topic:  Bill, on the wikipedia page on home hemodialysis, isn't that a picture of you on the boat this summer?)

[Bill Peckham]

I keep meaning to post an update - the jury is still out. This is the first week of my new schedule: extended dialysis Friday and Saturday night, 3-3.5 hour dialysis Monday, Tuesday and Wednesday. I took tonight off and will do back to back extended treatments tomorrow and Saturday. I did not sleep at all well the first two nights but I did sleep some. I haven't been sleeping well generally so it is hard to say what is causing what.

As far as machine preformance it worked fine - a couple alarms but nothing unexpected. After both runs I crawled into bed for a few hours but I think I'm going to try to stay up this Saturday and Sunday. The added set up time is to go through and change certain settings (No pressure pod, no #5 alarm, dialysate amount) and draw a syringe for the heparin. The dog isn't use to the routine and seemed kinda disorientated, like he didn't sleep.

Give me a little more time and I'll have a more complete report.

Yup that is a picture of me from this summer http://en.wikipedia.org/wiki/Image:NxStageDialysis.JPG . I have a bit of a editing habit over at wikipedia - they needed a picture showing a home hemodialysis machine and I offered it (it's on flickr so it is under a creative commons license). I like it because it shows the bags of dialysate, the machine is in use and I'm just surfing the internet on a boat v. the usual picture of someone reclined next to a full size machine in what is clearly a clinical setting.

[del]

Hubby does nocturnal on a fresenius machine. it took him about 6 months to get a good night's sleep.  Had to learn to trust the machine. he even went back to doing short daily treatmens. Clearances are so much better with the long slow pump speed that he went back to nocturnal. He sleeps right through most nights now. Give yourself lots of time to get used to it!!  We have been doing it since Oct. 06.  Over a year now.

[Bill Peckham]

Saturday night's run into yesterday went well. I finished with the machine about 7:30AM and stayed up instead of going back to bed. I took the dog for an extended morning walk along the beach by the fauntleroy ferry and went to the gym in the late morning. It was the sort of productive day I imagined dialyzing at night would support. I'm thinking once I get enough 171 cartridges I would like to try two extended treatments followed by a day off and then repeat. I don't know if that would meet the expectations of my center - it'd work out to 2.33 days off a week and they generally ask that people using the NxStage dialyze at least five times a week.

[jbeany]

I think your labs are more important than some random day per week number.  I hope you can talk them into letting you try it, at least.  Hey, someone's gotta do these things first so the rest of us can use them as an example!  Hope it works out for you, I know how hung up they can get about numbers.  My center can't even seem to figure out if my 3 on, 1 off schedule should be counted as 5 days a week or 6 for figuring KtV. 

[kidney4traci]

Good luck Bill, you are the pioneer!

[Bill Peckham]

I think your labs are more important than some random day per week number.  I hope you can talk them into letting you try it, at least.  Hey, someone's gotta do these things first so the rest of us can use them as an example!  Hope it works out for you, I know how hung up they can get about numbers.  My center can't even seem to figure out if my 3 on, 1 off schedule should be counted as 5 days a week or 6 for figuring KtV. 

I'm willing to give the schedule a try - I'll report what my center says. To figure out your weekly frequency you need to compare the three day on, one off schedule over four weeks. In a four week period you'd have 7 days off so you have 7/4ths days off per week or 1.75 days off per week so your frequency is 5.25/week (21 treatments in a 4 week period).

[Bill Peckham]

I drew labs yesterday, I'll know the results in a couple days.  On sunday I posted about my extended treatment experience on my blog here:
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/01/sunday-me-blog.html
I don't know if I should cross post my blog post here or link to them or what.  Ideas?

[Earlinda]

My unit required a medic alert service since I live alone. I chose ADT.

Bill does this mean that you are totally alone during treatment?  I am self sufficient in my treatments and my mother is around just in case of emergency.  Actually I would love to have my own apartment and live alone as I would like the freedom of being my own person again.

Earlinda

[Bill Peckham]

My unit required a medic alert service since I live alone. I chose ADT.

Bill does this mean that you are totally alone during treatment?  I am self sufficient in my treatments and my mother is around just in case of emergency.  Actually I would love to have my own apartment and live alone as I would like the freedom of being my own person again.

Unless you count my eight year old Australian Shepherd I live alone. Meinuk lives alone I know there are others. In Canada it is routine to have people on daily nocturnal dialysis who live alone.

I've now switched to doing exclusively extended treatments overnight. I feel better and I actually sleep as well or better on dialysis then I do in my bed. I have sore shoulders and when I sleep in bed I roll on my side and  I end up tossing and turning. When I dialyze overnight I am in a reclining chair and seem to sleep well but for alarms but the alarms are getting less frequent. I am turning into a big fan of nocturnal extended.

Friday night I dialyzed for 7 hours, treatment ended at 6AM, I was on I-5 heading to the Crystal Mountain ski area by 7AM. I skied until mid-afternoon. I can't remember the last time I skied but it came back and I managed some pretty steep terrain. Today I have a bruise about five inches across on my right hip and pretty much every muscle in my body is sore but I had a great time.

[Earlinda]

We do not have extended NxStage treatments here in Missouri yet.  The NxStage nephrologist told me that when it happens here I will be the first to know.  Right now my treatments run 3:08 each and I use a total of 30 liters of dialysate with each treatment using the pureflow.  If I use bags then I use 25 litres of dialysate.