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Author Topic: Some questions about nocturnal  (Read 6704 times)
Gryphon
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« on: July 22, 2012, 09:54:39 PM »

Ive been thinking about switching to nocternal home hemo, currently doing regular home hemo with nxstage.  I have read a few post on here that were talking about single needle systems... How does that work and what other differences are there between regular nxstage at home and nocternal as far as hooking up?

Im moving to another state at the end of next month so hopefully the center there offers nocternal at home...

Ed




Edited: Fixed error in subject line - okarol/admin
« Last Edit: August 14, 2012, 01:57:05 AM by okarol » Logged
justjen321
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« Reply #1 on: August 05, 2012, 07:24:48 AM »

Hi Gryphon,

I can't speak to the single needle method, as we've never used it. I will, however, encourage you to look into Wellbound in whatever state you are moving to. They are very progressive with Nocturnal, and it will save you tremendous time and effort in fighting for it. :) (You might even post the city and state you are moving to and see if anyone can give you 'reviews' and info on the centers in that area)

Now. You asked about setting up Nocturnal versus short daily. I'm assuming you use NxStage. If not, none of the above will likely mean anything to you, and Desert Dancer might have more info.

Setting up for Nocturnal takes me less than five minutes more than it did for Short Daily. You'll have to learn and use a Heparin pump, and draw Heparin for it.

On NxStage, the cartridges are different for Nocturnal V Short Daily. There will be no Access Pressure Pod on the ones you use for Nocturnal, because you won't be monitoring your pressures every half hour. The 'kidney' will also have a new tube, it's what connects to your Heparin pump so you get small doses through the night. Currently, we do a 2500 bolus and .66 every hour stopping one hour before treatment ends.

You'll also want to find a good method of securing your needles. I tape exactly the same as I did for short daily, but I finish by using a layer of Vet Wrap (not tightly, that's bad.) which is also what secures the small enuresis alarm to his Venous needle site. The enuresis alarm is also new for Nocturnal, as you likely won't have used one with short daily. It's a very small little 'paddle' like thing, about the size of your thumb, that rests over the Venous needle entry (over your tape) and detects moisture. I learned to trust the thing by licking my finger and touching it. It went off immediately.

You won't chart nearly as often as yo are used to. You'll do the usual initial charting, you'll log your 200's (V & E only, remember, you have no Access Pressure Pod for an A) and you'll go to sleep. When you wake, you'll do the final charting and take off. :)

Jen
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TIA reveals failed kidneys (completely unexpected) January 2011
Husband on home PD since May, 2011
Switching to NxStage Home Hemo Nocturnal early spring of 2011

http://failedbeans.blogspot.com/
Rerun
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« Reply #2 on: August 05, 2012, 08:03:07 AM »

The US does not use single needle.  Canada does and has found it wonderful for Nocturnal.    I'm in the US and cannot find single needle.
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amanda100wilson
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« Reply #3 on: August 05, 2012, 10:22:22 AM »

What is a single needle and are there any effects on efficiency?  Does it mean that there is only one buttonhole?
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bevvy5
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« Reply #4 on: August 05, 2012, 12:42:35 PM »

The US does not use single needle.  Canada does and has found it wonderful for Nocturnal.    I'm in the US and cannot find single needle.

I don't mean to disagree and maybe I'm missing the point, but if the discussion is about NxStage, it is not available in Canada.

Hubby does nocturnal home hemo but it's a conventional type Gambro machine, two needles.
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cassandra
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« Reply #5 on: August 12, 2012, 08:35:41 AM »

I would love to start with nocturnal on Nxstage, but the hospital wants to see 'research, and articles' first, which I will have to find. Does anyone know any? Thanx already

love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
mcclane
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« Reply #6 on: August 12, 2012, 02:37:38 PM »

I did home hemo, and it was single needle; buttonhole was involved.

My machine was the Bellco Formula (POS machine but that is another story  :rofl;).  Anyways, the home hemo unit creates 2 buttonholes, and they want you to alternate buttonholes, so one night it will be one hole and the other night the other hole.

The needle used is a blunt, 15G if I remember correctly.  It is a Y needle, and the machine is double pump, I can see why the hospital picked the Bellco because it can run single pump (for CVC or double needle) or double pump (single needle).  Single pump is more efficient in removing waste from the blood, as the pump does not stop but runs continously - the blood is drawn from one needle and put back via the other needle.

In a double pump setup (single needle, remember it is a Y needle), one pump will draw blood for a certain amount of time (the doctors determine the time one pump turns) then it stops, then the other pump goes which puts back the blood, so in a double pump system both pumps do not go at the same time but one goes, stops, the other goes, stop, and it repeats.  On the Bellco, there is an electro clamp, so when it draws blood the clamp is on, when it puts back the blood it is off.  It does dialyse ok, but it isn't as effecient as a single pump or double needle due to the fact that when the pumps switch over there is no dialysis for those mere milliseconds.

Oh, it is impossible to do nocturnal with a Bellco double pump, the clacking of the electroclamp is loud and annoying, it is next to impossible to sleep with that noise, plus in a double pump the machine is way more sensitive to abnormalities so it alarms often.

I don't know much about the nxstage, but I doubt it uses the double pump system, so more than likely it will be double needle.
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justjen321
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« Reply #7 on: August 12, 2012, 08:20:00 PM »

Damn Cassandra,

I really, truly hate when doctors and units and hospitals ask the patients to do the research. They are also very good at then discounting the research when presented to them, because they don't like/know/trust the sources.

I wonder if it might make more sense to have them contact a unit/Nephrologist who is already on board with Nocturnal and start there? I'd be happy to share the names of both our unit and our Neph if they are willing to put the effort into making the calls. :)

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TIA reveals failed kidneys (completely unexpected) January 2011
Husband on home PD since May, 2011
Switching to NxStage Home Hemo Nocturnal early spring of 2011

http://failedbeans.blogspot.com/
cassandra
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« Reply #8 on: August 13, 2012, 03:58:19 AM »

Completely agree with you Justjen321, and thank you for the offer. But of course it will have to be a 'local' clinic who happens to be doing that, as in around the corner (I'm in Liverpool UK). And thank you for starting me again at ringing the clinics in the whole of the UK again.

Take care, and lots of love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Desert Dancer
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« Reply #9 on: August 14, 2012, 12:36:18 AM »

I would encourage you to reach out to any professional - local or not - who has expertise in nocturnal dialysis. That is a very small subset of nephrologists and as such, they all tend to know one another. Any nocturnal expert - anywhere - may just be able to refer you to someone locally you may not have thought to contact.

There is plenty of research out there, from highly reputable sources, supporting the superiority of nocturnal dialysis. If they are rejecting those then I fear you are dealing with ideologues and not scientists.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

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cassandra
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« Reply #10 on: August 14, 2012, 11:30:04 AM »

Thanx DD,

love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
M3Riddler
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« Reply #11 on: August 14, 2012, 04:40:41 PM »

I would love to start with nocturnal on Nxstage, but the hospital wants to see 'research, and articles' first, which I will have to find. Does anyone know any? Thanx already

love Cas

Cassandra,

There is no reason why your nephrologist should not be up to date with this information.  If he is not familiar with nocturnal dialysis, if it be with nxstage or another cycler, he as at his availability many professional databases where he can obtain the information easily.  It sounds to me that they are putting everything on you and this should not be.  Your nephrologist should be trying to give you the best possible care available and if they do not have the info, it is their duty to find the answers, especially if you bring the questions up.   
Dont give up on trying to get the best possible treatment for you.  And defintely dont give up letting your nephrologist.... If you have not found any info on nocturnal, then please message me and I can provide you with some documentation.

///M3Riddler
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cassandra
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When all else fails run in circles, shout loudly

« Reply #12 on: August 16, 2012, 01:59:44 PM »

Thank you too M3Riddler, I might keep you up on that offer. I'll just finish (tomorrow, bit late in the day now  :laugh:
) ringing around the clinics.

love Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
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