For those who do Nocturnal, question on needles

[skyedogrocks]

Rob is really interested in doing Nocturnal, it would give him so much more time and energy.  Right now he does NxStage 5x week.  His/our biggest concern are the needles falling out. Here are my questions:

Are you able to sleep in bed or do you sleep in your "dialyis chair"?
How do you tape them so that they don't fall out? 
Ever had an infiltration from the needles while being on nocturnal?
Do you sleep on your back or side that he needles aren't on?

His neph and nurse are totally unsure of how to do it nocturnal, so we need to work with them on it.  He loves his neph, but he's also unsure of how to handle Rob at times.  Rob is the only person he treats who works a very physical full time job.  Rob's job keeps him sane, he doesn't want to think of leaving it, but he's getting tired during the day from the demands of it.  Plus he works outside, and now that the warm weather is coming, he's dreading it.

He is using an upper arm graft (it was a fistula that never took, so they grafted a vein from his other arm to this fistula) and his lower level access still.  He is soooo afraid of infiltration or the needle falling out and him bleeding out.

Thanks for any insight/help you can give!

[twirl]

Keep his job
I had to leave mine and I hate not working
working helps you have something to think about other than dreading dialysis
when I was in the hospital, I had dialysis in a hosptial bed and I slept on my side with my needled arm on my side (hip)
it was so much better than in the chair
Rerun is the expert on noctural diaysis
I would like to do noctural but it is not offered here
and I think we sleep in the dialysis chairs
four hours is hard enough, I can't see eight hours in that chair
a bed would be better
good luck
I am rambling on and I do not think I am much help

[flip]

I think I'd rather do NxStage than nocturnal. Why does he want to switch?

[Bill Peckham]

Rob is really interested in doing Nocturnal, it would give him so much more time and energy.  Right now he does NxStage 5x week.  His/our biggest concern are the needles falling out. Here are my questions:

Are you able to sleep in bed or do you sleep in your "dialyis chair"?
How do you tape them so that they don't fall out? 
Ever had an infiltration from the needles while being on nocturnal?
Do you sleep on your back or side that he needles aren't on?

Sorry but I'm not clear on his access - is it a natural access (you can use buttonhole method and dullish needles)? or a Teflon graph (you use the ladder method and sharp needles)?

I have a fistula and do the buttonhole. I sleep in my recliner and do not seem to move much at all.

I am very deliberate about connecting the needle line to the blood tubing making sure that connection is tight. I have a "bed wetting" alarm and a hot water tank leak alarm to warn me if there is a leak while I am asleep. I've not had a leak with the 171 cartridges that are used for nocturnal (these cartridges are the same 'cept no pressure pod and they have a line to attach to a heparin pump.

Taping: I have changed the way I tape - I use three pieces instead of two. I put one piece across the needle wings and a second piece around the needle - horseshoe like. Once both needles are taped with the two pieces I use the third piece to tape down all the tape ends - placing the tape on either side of the needle lines so the tape is parallel to the needle lines. The final step is to tape the needle lines to a gauze wristband and then I tape the lines to my side table giving myself some slack but not too much. I hope this made sense - this is definitely a case where a picture would be worth a thousand words - I'll try to remember to take a pic tonight.

I work through the carpenter's union and have found that doing nocturnal is logistically much easier and I sleep as well on dialysis as I do when I'm not on dialysis. I can't sleep on my back in bed but it is not a problem when I am hooked up in my chair. The Northwest Kidney Centers home program is a resource for other programs - you could suggest your nurse give them a call.

I would definitely recommend nocturnal to anyone whop could do it - it is less demanding time-wise and you feel better. I have an 8AM meeting tomorrow - I'll set my machine like an alarm clock to finish about 6AM. I've done this before - I should be off/not bleeding by 6:30; dressed out the door by 7 to give me time to walk the dog and commute to the meeting.

[Bill Peckham]

I think I'd rather do NxStage than nocturnal. Why does he want to switch?

It's the same machine - NxStage calls it extended dialysis while you sleep because the FDA may see "nocturnal" as a different modality.

[skyedogrocks]

Bill - Thank you so much for responding, I was hoping you would!  Rob does use sharps still.  It's an upper arm fistula that wasn't working well, so they grafted a vein onto and it flows great now.   A picture of how you tape would be great.  That's really his #1 concern, as this graft is high speed and the needles have fallen out before.  I love the idea about the bedwetting alarm, never thought about that.

He is going to really push his Nurse and Neph for this, he really wants to do the extended dialysis.

Thanks!

[kitkatz]

Bill, are you at home doing nocturnal?  My questions for you is can you get up and go to work all right after being on dialysis all night?  I am thinking of trying it in Riverside in clinic if home hemo bottoms out on me.

[Bill Peckham]

Bill, are you a thome doing nocturnal?  My questions for you is can you get up and go to work all right after being on dialysis all night?  I am thinking of trying it in Riverside in clinic if home hemo bottoms out on me.

I'm at home. So far so good.

I've done DC trips doing nocturnal in the hotel room and then going to meetings all day. I drive over to Spokane Thursday and will do two treatments in the hotel over there, attending the Democratic State Convention in the day.

I'm doing five days a week the hard part is going to bed early enough to get enough sleep - no snooze alarm with the NxStage.

[Bill Peckham]

I uploaded a video that shows my tape job - not my best effort but I think better than a picture which was better than me writing it out so the video has to be way better than me writing it out ...
http://video.google.com/videoplay?docid=7996438588639581287&hl=en
At the end I show the moisture alarm - the bed wetting alarm - and test it ... it is an unimpressive test. I had a couple of those pads so after the video I swapped it and the one I have now seems more sensitive. Good lesson that the final step in preparation is testing.

[flip]

I guess I'm totally confused now. Can you not do NxStage during the day? I always thought that you could do it anytime you wanted and not just while you sleep.

[Bill Peckham]

You can. Where's the confusion?

[flip]

I think I'd rather do NxStage than nocturnal. Why does he want to switch?

It's the same machine - NxStage calls it extended dialysis while you sleep because the FDA may see "nocturnal" as a different modality.

I want to try NxStage if I can get a caregiver but I want to do it at my convenience.

[skyedogrocks]

I uploaded a video that shows my tape job - not my best effort but I think better than a picture which was better than me writing it out so the video has to be way better than me writing it out ...
http://video.google.com/videoplay?docid=7996438588639581287&hl=en
At the end I show the moisture alarm - the bed wetting alarm - and test it ... it is an unimpressive test. I had a couple of those pads so after the video I swapped it and the one I have now seems more sensitive. Good lesson that the final step in preparation is testing.

Thank you!!!!   Good to know that the needles haven't fallen out.  He also likes the idea of the wetting alarm, he thought it was very clever!

[mark m]

I just joined a nocturnal study and I am case study number 4. I have been asking a lot of questions an the doc said she had not heard of someones needles coming out during sleep. The liquid detector is just there just in case.

No infiltration using the dull button hole needles.

You are supposed to feel even better doing nocturnal dialysis. And the diet gets even more liberal. The doc said I could possibly be drinking OJ.   

I will start in Aug. Hoping I can sleep.

Bill -- thanks for posting the video of your taping job. I will have to try it out.