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Author Topic: Why this is the quietest thread on IHD  (Read 4992 times)
Bruno
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« on: January 17, 2011, 03:40:32 AM »

Ever wondered why if NHHD was so good there are not more posts on this thread? All the other threads are lively and active with lots of people sharing their complaints and difficulties, happily whinging about this and that and getting lots of support...but not on nocturnal.
And where is the gossip that unnerves us when we read about the latest f***up at a dreadful centre that has nearly killed one of our CKD comrades?...never happens here at nocturnal.
Have you ever wondered why this is so?
Well, I have, and I'm going to tell you why...
Folks, it's because NHHD works...it's the next best thing to a transplant, and it's a fact, isn't it, that once you get your life back the last thing you want to do is be reminded of how s***y your life once was. Yes, of course you still want to help but often a normal life doesn't give you the time to devote to IHD like you used to.
So nocturnal is really a victim of its own success, it's the one thread on IHD where people get better and move on.
Or am I talking crap?
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Desert Dancer
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« Reply #1 on: January 17, 2011, 06:24:27 AM »

I think also, bruno, there just aren't that many people on nocturnal on IHD. I can only think of five of us off the top of my head.

But even so, I think you're probably right. I've most definitely gotten my life back and I feel one thousand percent better than I did six months ago. To tell you the truth, I feel a little guilty when I try to offer up sympathy here because as much as I genuinely want to be supportive, it's difficult to relate to most (if not all) of the problems that go on in the units. Everything here at home is precisely the way I want it and I call all the shots. Any difficulties are dealt with immediately and properly, and if I have any complaints it just means I have to kick my own  :sir ken;

All in all, I would guess the sound of crickets here is lots better than the sound of whinging! It means everything is going as it should.
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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.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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« Reply #2 on: January 17, 2011, 08:58:27 AM »

Probably because it's offered so rarely in most places.  My questions about a local program for nocturnal were answered with "We wish!"  In rural areas, it's hard enough to find trained D staff, without expecting them to work nights as well.
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« Reply #3 on: January 17, 2011, 10:28:28 AM »

I have often wondered why it's not more available.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
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Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
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« Reply #4 on: January 17, 2011, 11:58:37 AM »



I'm sleeping........  shhhhhhhhhhhh   :blank:
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Desert Dancer
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« Reply #5 on: January 17, 2011, 12:03:43 PM »

I'm sleeping........  shhhhhhhhhhhh   :blank:

But I'm not.  :banghead;  Insomnia is a real PITA with this modality. Let that kick off the nocturnal b*tchfest!
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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.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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« Reply #6 on: January 17, 2011, 12:58:00 PM »

 I agree... yet its only because of the many people who are on nocturnal  have said so..... I have been doing Nxstage for a year now  and have been waiting to start nocturnal.... ( just waiting for that damm pump that they keep telling me they ordered......)   Right now I have slowed my speed down to 370  doing 30L  and I am sleeping....  I get on about 10pm and off at about 2:30 am.....   when I get the pump  I will beable to sleep the full 7 or 8..... I am looking forward to that...

 Really  I think there arent alot of people here anyway...... compared to the amount of people who are on D...  I have told so many about this site along with a few others.....  followed up and they just dont care about this stuff....  Seems most just want to stay to them selves...Most of them have never heard of home D or nocturnal and in my town  there is only a few clinics who have nocturnal or home D.... Like I said  most do not know.....

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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

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« Reply #7 on: January 17, 2011, 03:23:49 PM »

More than likely it is due to that it is just not offered as much. With all on home dialysis, Home Nocturnal with Hemo has the fewest percentage of people performing treatments.  One reason is that the Docs and administration are not doing their job by offering it to us. 
You should consider yourself lucky if your provider offers you home hemo dialysis let alone nocturnal hemo.
Dialyzors need to speak out and ask their docs for nocturnal instead of waiting for them to offer it.  The nephrologists can write for it off label.

Hopefully this will change significantly when NxStage becomes FDA approved for nocturnal.

///M3R
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« Reply #8 on: January 17, 2011, 04:02:44 PM »

hello,
 I am going to have to be really honest with you. I am on PD and have been for 3 years now. If I had, had, had to do hemo without a question, and no transplant, my dream/goal of mine is to do home hemo noctural. From what I heard/read on nocturnal you do not even have to take binders or a lot of people dont! It me that seems to be the most effective dialysis.
 On PD i am on the cycler at night and have my days free. But, I think the home hemo would really clean out your toxins.
 
 Im really trying to write a book, I am actaully stopped at the moment because (one of the reasons) I do not have anyone on home hemo nocturnal to share their experiences. To me that is my favorite one. (it seems to get you the cleanest and frees your day) And I really want people to know all their options.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
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thegrammalady
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« Reply #9 on: January 18, 2011, 06:16:12 PM »

yes nocturnal is wonderful. and i'll talk your ear off about it if you will let me.
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« Reply #10 on: February 18, 2011, 12:35:45 AM »

It has been some time since I have been on this forum, I needed a break I think, from exactly what Bruno mentioned in the original post.  I have been on Home Nocturnal (single needle) for almost three years now, I was doing 6 nights a week but dropped to 5, only because I work and I was finding I was too tired to set up by the time I got home from work that many nights. 
ANYWAYS just wanted to say that I totally agree with you.  Pretty hard to complain or even write anything when there really isn't any of that crappy in centre trouble when you do everything yourself at home.  To tell you the truth I can't remember the last time I even had an alarm go off during the night.  And the fact of not being on a restricted diet or fluid restriction is fabulous!!
Needless to say, as this being my first time back on here in probably a year it does not surprise me that there isn't much posted in this section.
Anyway nice to be back and I will see if I can contribute to any question anyone may have.  And for the record, yes I do single needle dialysis, I know before I was asked by some members how that was possible becuase they were either told by their unit or neph that it is no longer available.  Well it is.
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greg10
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« Reply #11 on: February 18, 2011, 04:27:55 AM »

It has been some time since I have been on this forum, I needed a break I think, from exactly what Bruno mentioned in the original post.  I have been on Home Nocturnal (single needle) for almost three years now,..
Thanks for coming back and posting your experience.  I searched the web and found a John M. doing single needle in BC and he has written a good summary.  You and John M. could be the only two single needle NHHD in North America  :)  Apparently an additional pump is required.  I don't think single needle HD is possible with the NxStage system.
Quote
Posted Aug 24 2008 9:33pm

Last night was another quiet night, no alarms.

It’s been a few months now since we switched over from a 2 needle setup to a
single. When I started on dialysis in the hospital and clinic, only the
traditional 2 needle method was offered. One needle / line is an “out”, the
other is an “in”. In the single needle method, only one needle, branching into 2
lines is used and the dialysis machine alternates using it to pump the blood
out, then pump it in.

In B.C. where I first had home dialysis, the possibility of single needle was
never discussed with us. I don’t know why, it has worked out just great so far.
There is a slight reduction in the amount of blood processed each night with the
single needle system compared to the double needle, but the total amount
processed over the entire week of dialysis is so much larger than with
conventional 12 hours per week dialysis that it really isn’t noticeable.

The biggest difference is in the number of alarms.

In the clinic, I would alarm almost every time I shifted in the seat. This would
have been unworkable in a nocturnal setting when I am trying to sleep. During
the first few days in training for the home dialysis program, Susan tried
various methods of taping down the needles and lines to my right arm, eventually
finding a system that worked for us and my fistula. I could lift my arm and move
it a bit without problem.

Then the training nurse had us surround the site and lines with “burn netting”,
a light-weight, flexible mesh that comes in rolls in a tubular form. This
netting is used with burn patients since it is sterile and weighs almost
nothing. The burn netting lightly holds everything in place an additional amount
so that moving the arm flexes the needle’s position even less.

The last element was the addition of my neoprene sleeve. For those who have not
read my archive posts, I took the last 12 inches from a scuba suit arm and slid
it on over the burn netting / taped lines. That cut down the number of night
time alarms to just a few over the course of a run.

However, even with all this, some nights the alarms just kept coming. The
culprit seemed to be the upper needle. We use the ‘buttonhole” method on home
dialysis, where you use the same holes every night, unlike in the clinic where
you establish new ones each run. After a few sessions, the buttonhole process
establishes a “track” much like the hole in a pierced ear and no longer hurts
when the needle is inserted. Once I started getting alarms at night with the
upper hole, they would not go away until we established a new hole and tract in
a different spot.

I talked this over with Rose, one of the wonderful nurses who look after our
program. She suggested going to single needle dialysis and using the bottom
hole’s area for that needle. The dialysis machine needed to be changed as the
single needle system requires 2 pumps (one for each blood flow direction), but
that was arranged for without problem. Rose warned Susan that it would take a
few weeks to get used to the differences in the systems and it did. The first
few nights were very frustrating for her as she had to make adjustments to her
thinking, often at 4 in the morning when Susan is not at her best.

Now however, everything has settled down. The one hole that we are using works
perfectly and more nights than not, we have no alarms whatsoever. I toss and
turn in bed, sit up, adjust the covers, reach for things in my night-stand, all
without alarms. For the first time in years, Susan and I are getting
uninterrupted sleeps. The payoff is less fatigue the next day and a happier
wife!

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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
paris
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« Reply #12 on: February 18, 2011, 03:34:38 PM »

We need more centers to offer nocturnal.  I asked my neph 5 years ago; they had no plans to offer nocturnal.  I wonder if staffing is an issue, also.  Each center wants to be profitable and I don't think they feel the need to offer more choices for patients.  That is because they aren't doing dialysis!   

A side note - When I first joined, transplants were few and far between here.  It was the rare occasion when a member got a transplant. Now it is one of the busiest threads.  So, maybe, hopefully some day soon, nocturnal may become the busiest thread.    :2thumbsup;
« Last Edit: February 18, 2011, 03:37:51 PM by paris » Logged



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greg10
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« Reply #13 on: February 18, 2011, 04:28:18 PM »

We need more centers to offer nocturnal.  I asked my neph 5 years ago; they had no plans to offer nocturnal.  I wonder if staffing is an issue, also.  Each center wants to be profitable and I don't think they feel the need to offer more choices for patients.  That is because they aren't doing dialysis! ..
Please take note of this thread introducing a regional operations manager for a national dialysis chain:
http://ihatedialysis.com/forum/index.php?topic=22020.msg362022#msg362022
Perhaps these questions can be addressed over there as to how nocturnal dialysis is being managed by the national dialysis centers operators.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
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« Reply #14 on: February 18, 2011, 05:33:28 PM »

I am impressed with the single needle one. I would really like to use this for  my book, because I really believe that other patients need to know about this single needle use at home. I may not mind doing home hemo myself if it only involved 1 needle! What a huge difference! Wow.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Jay72
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« Reply #15 on: February 19, 2011, 02:04:31 PM »

If you have any question please feel free to message me and I will fill you in on it.  In short, I use the Fresenious 2008K@Home and you are exactly right, it has two pumps on it, which all 2008k machines have the ability to have added! one pump is arterial and takes the blood out and the it shuts down and then the venous pump kicks in and pumps blood back.  It is a much slower process, as I do a minimum of 6 hours and max 8 as even running at a dialasate flow of 200 the most a jug will last is just over 8 hours.
As for the nocturnal part, I am actually in a study that is going on out of LHSC Hospital in London Ontario Canada, and they are trying to prove to the Gov't that frequent dialysis is much better for a dialysis patients well being than the regular conventional 3 times a week for 4 hours.  We also have in the study, something called short hour daily, which is where you do 2 hours (two needles) 6 days a week.
@Lillupie  Once you get used to doing your needles it isn't a big deal at all whether you do one needle or two.  I also use the buttonhole technique and it truly is a great way to needle once you get the site established.  Plus you don't get the huge fistula showing up on your arm.
You are more than likley right about Nxstage not having a double pump, but I will tell you what, I would be more than happy to use two needles and have that portable machine, WE DON'T HAVE THAT here in Canada.  Wish we did I tell you that.
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del
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« Reply #16 on: February 19, 2011, 02:59:03 PM »

Hubby has been doing nocturnal home hemo for over 4 years now and it does give you your life back.  He can eat and drink as he pleases and no binders!!!  He even had to increase his potassium and phos intake!!  AS a dialysis choice it is the way to go but sadly it is not well promoted and many people ( doctors and nurses included) know nothing about it.
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« Reply #17 on: April 09, 2011, 06:29:15 AM »

Ever wondered why if NHHD was so good there are not more posts on this thread? All the other threads are lively and active with lots of people sharing their complaints and difficulties, happily whinging about this and that and getting lots of support...but not on nocturnal.
And where is the gossip that unnerves us when we read about the latest f***up at a dreadful centre that has nearly killed one of our CKD comrades?...never happens here at nocturnal.
Have you ever wondered why this is so?
Well, I have, and I'm going to tell you why...
Folks, it's because NHHD works...it's the next best thing to a transplant, and it's a fact, isn't it, that once you get your life back the last thing you want to do is be reminded of how s***y your life once was. Yes, of course you still want to help but often a normal life doesn't give you the time to devote to IHD like you used to.
So nocturnal is really a victim of its own success, it's the one thread on IHD where people get better and move on.
Or am I talking crap?

No you aren't talking crap. I think you are spot on. I am still in training for home nocturnal hemo and I'm almost done, my machine will be delivered home next week or the following week, so I can tell you why I haven't been active posting here yet, and that is because I am busy! (in center hemo I wasn't busy I was asleep all the time!) I am doing all the electrical and plumbing renovations to my home myself, so I'm very busy. Also I have a 2 hour commute in rush hour traffic to and fro the dialysis training unit Monday thru Friday but you know what? It's well worth it. I feel better now than ever before and I can eat what I want. Except weekends where I get 2 days off in a row I have to watch my fluids and diet, but when I do it at home at night I will not have 2 days off in a row I will be doing hemo 6 days a week 6 hour treatments. Hello Pizza and chocolate cake! lol
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« Reply #18 on: April 09, 2011, 11:16:56 AM »

I have often wondered why it's not more available.

It probably costs more than other home HD. From the economic point of view, it may be better off for these companies not to offer it.
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« Reply #19 on: April 09, 2011, 03:31:01 PM »

Why would it cost more?  Perhaps there is the need for a bit more heparin and a pump, but are those things more expensive than hiring more clinic staff?  I doubt it.  And it probably costs less that it does to manage those patients who don't do well on standard D and end up in the hospital with clinic-acquired infections and cardiovascular damage.
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« Reply #20 on: April 09, 2011, 05:42:43 PM »

MM, what you are thinking is for the private insurances and Medicare point of view. For dialysis companies, they get certain amount of money from the insurances or Medicare for each patient each day. There are probably more supplies needed for overnight HD than the other HD, so their margin will be lower. They may lose money if the patient has Medicare as the primary insurance. Other cost, like hospital stays, are not the cost to the dialysis companies.  There may be a conflict of interst for the cost and better care for the dialysis companies.
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« Reply #21 on: May 17, 2011, 11:25:47 AM »

My hubbie is just now starting nocturnal with a NXstage cycler.  What do you use for leak detection and what do you use to stabilize your needles while you sleep?  thanks for the input.
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« Reply #22 on: January 23, 2017, 01:20:26 PM »

Hi all, April here.

I have been in centre for 7 months now and going to nocturnal. Thankful to get away from the Davita I am at. Most were nice but one infiltrated me and claimed he hadn't and then would bitch about me while he thought I was listening to music or sleeping. So needless to say, I get anxiety if I think he might be there because I want to punch him

so onto in centre nocturnal. I am very hopeful that I will feel better. Right now just going to day to day not knowing if I will feel well or not. I am really just alive not living. I am really tired and am not sure how many years I can do this.

I'll report back whenever I get started ( I don't understand why it takes 3 weeks to get you to the centre when they say they have an opening ) :cheer:
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« Reply #23 on: January 23, 2017, 10:25:38 PM »

My hubbie is just now starting nocturnal with a NXstage cycler.  What do you use for leak detection and what do you use to stabilize your needles while you sleep?  thanks for the input.
I tried  NxStage nocturnal for a while, but quit because of insomnia (will try again).

I did not need heparin, so I did not need the 172 cartridge.  Since the 170 does not have the safety clip, I put tape around both the red and blue connectors where they screw to the blood line.

Lots of tape to the arm.   Lots.

NxStage has a polycarbonate filter holder designed to make sure blood leaks fall down vertically and trigger the alarm.

The clinic issued me a Redsense blood leak detector.    I had some very nice conversations with the Redsense CEO (really nice guy hard core nerd).

I have no confidence the alarms will wake me (poor high frequency hearing).  I tape a photocell to the red alarm light on the NxStage and the blood leak detector which goes to a circuit that triggers a relay I have plugged into a bright lamp to alert me of alarms without waking the house.
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