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tyefly
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This will be me...... Next spring.... I earned it.
« on: March 09, 2011, 04:36:52 PM »
I am  starting Extended with Nxstage this coming Monday..... I have been working on this for better than 8 months.....   its been a long haul....  alot of challenges.....  alot of this and that....
    I am looking forward to sleeping dialysis away.....
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
texasstyle
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« Reply #1 on: March 09, 2011, 04:41:11 PM »
I hope it is what you are expecting and makes your life a little easier and your body a lot healthier. Good luck!
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caregiver to husband using in-center dialysis 4 years
greg10
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« Reply #2 on: March 09, 2011, 05:10:04 PM »
Hope you do very well.  Do you have any additional support from your clinic for doing extended home HD?  such as training and monitoring?  I think I read that you have received the heparin pump and training on that.
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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
MooseMom
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« Reply #3 on: March 09, 2011, 05:14:06 PM »
That is outstanding!!!  I want to hear all about it once you're up and running (or down and sleeping..)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #4 on: March 09, 2011, 05:18:56 PM »
Are you going to use a bed or chair? Personally I've found the chair to work well but I know most people use a bed.

Don't be surprised if you don't sleep that well the first night - try not to nap even if you didn't sleep well at all (easier said then done) and hopefully you'll be tired enough to sleep the next night. It'll take some getting use to. I found that having music or a podcast helps me fall a sleep, but TV keeps me up. I also take something once I'm on if I'm having trouble falling asleep.

Think about what to do during the day so that you fall asleep without a lot of starting at the ceiling - watch out for caffeine, no naps, etc.

For me it's made it much easier to feel well and have time to do the things I want to do.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
boswife
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« Reply #5 on: March 09, 2011, 07:16:15 PM »
Im really happy for you as i know how much you've been wanting this.  Seems those who do it LOVE it and feel wonderful and im sure you'll be right with them.  Looking forward to hearing how you do...   :2thumbsup;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #6 on: March 11, 2011, 05:50:11 PM »
  I have a bed and a chair to choose....My machine is in between them....  I am sure I will spend more time in bed..... chair is ok but it doesnt lay flat....  as far as sleeping while hooked up.... I am not worried.... Like Bill said... just stay busy all day doing what needs to be done and then get tired and then go to bed.... hooked up... I am so excited... I will not have to do dialysis during the day .... what will I do with all my time....  I think I will get my life back....   Fishing , gardening, hiking ( even if its day trips ) ,  Dog walking, shopping, more gardening,  oh  I do run a business from my home...guess I can still do that  .... LOL.    choices   choices......
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
willowtreewren
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« Reply #7 on: March 11, 2011, 07:12:56 PM »
This is really, really good news!  :2thumbsup;

And now you may have paved the way for others in your area.

 :clap; :clap; :clap;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
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« Reply #8 on: March 11, 2011, 07:16:10 PM »
No wonder your depression is lifting!!  You've got choices, and you've got your life back.  I want to hear EVERYTHING about your venture into extended D because that's my plan, too!  I can't wait to learn everything there is to know from you!

PS...I found the perfect dialysis chair.  It's only $1200! :o :o :o  I think it sings, dances and makes money!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #9 on: March 21, 2011, 05:45:07 PM »
Quote from: MooseMom on March 11, 2011, 07:16:10 PM
No wonder your depression is lifting!!  You've got choices, and you've got your life back.  I want to hear EVERYTHING about your venture into extended D because that's my plan, too!  I can't wait to learn everything there is to know from you!

PS...I found the perfect dialysis chair.  It's only $1200! :o :o :o  I think it sings, dances and makes money!

MM    you should not have to buy a chair....  they  ( the clinic is suppose to give you a chair...
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #10 on: March 21, 2011, 05:56:35 PM »
UPDATE....  I have started nocturnal....   last night was my first night....  I wanted to start a few days ago but the pump that they gave me,,, no one new how to use it ...so I took it home and read the instructions and did a few practice runs...  anyway..

 I did  NOT   sleep  very much last night.... I kept waking up every few minutes or so...  went on the machine at 10 pm  still up at 1am and they I looked at the clock at 2:30  and  then at 3:30 my pump had alarms....  so up I went  and the pump said that the line was occluded....  I looked at the line... and nothing was wrong... so I added 2ml of heparin to the line and back to bed I went.....  they I slept for a hour or so and up again ...  I waited till I finished my run..  8 hour run.... 

I hope tonight the heparin pump runs with no problem......  I dont want any alarms...  The question I have is how do we get past the #5 alarm....   I dont want to walk up and have to turn that off....  any ideas..... 

I am running BS 260 with a FF of 28 for 8 hrs...   machine is very quite with that speed... 
 
well  hopefully tonight will be a breeze....
 
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Bill Peckham
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« Reply #11 on: March 21, 2011, 06:52:36 PM »
There is a machine setting for the #5 and there is one to turn down the brightness of the display.


I've had nights where I didn't sleep that well and I know when I made the switch I went back to bed after the first two runs  - which was probably a mistake in retrospect - it'll get better. If you're exhausted better to get on early than to nap.


How did the kidney look after the run? What do you think caused your alarms? I wasn't sure from your post if you couldn't sleep from the start because of alarms or if you couldn't sleep and then late in the run had alarms to boot.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #12 on: March 21, 2011, 08:51:31 PM »
I didnt sleep well from the beginning....  it was like starting a new job or  getting ready for a big vacation.... guess I was excited....LOL     I am not sure why the heparin pump stop working 4 hours into it...  it a Baxter AS50  ( hope that wasnt the recalled one....)  the pump said the line was occluded.....  ????  anyway.... I shot 2 ml of heparin into the filter....  no more problems.... my fliter looked great... no streaking ... just a little clot in the front... which I believe is normal....   tonight I am giving it another shot..... I bet I sleep better tonight....

good to know how to do the machine settings...  I had to change the FF down from 33 to 28... pretty easy for the most part..

Even though I have only ran one night....its sure nice to get up and get on with my life....and not have to do another 4 hours of dialysis....   I could get spoiled doing nocturnal..... 

My center wants me to document everything that I am doing and then they will write up a protocol....   as there are a few others in the clinic that want to go extended too....    I love it..... Change is good....
   
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Bill Peckham
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« Reply #13 on: March 21, 2011, 10:32:00 PM »
Quote from: tyefly on March 21, 2011, 08:51:31 PM
My center wants me to document everything that I am doing and then they will write up a protocol....   as there are a few others in the clinic that want to go extended too....    I love it..... Change is good....
   


1. Join IHD
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
greg10
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« Reply #14 on: March 22, 2011, 05:28:39 AM »
Quote from: tyefly on March 21, 2011, 08:51:31 PM
.the heparin pump stop working 4 hours into it...  it a Baxter AS50  ( hope that wasnt the recalled one....)  the pump said the line was occluded.....  ???? .
I am not familiar with the AS50, but there was an Urgent Device Letter (UDL) from 2005 that talked about the occlusion pressure setting:
http://www.baxter.com/downloads/information/safety_information/AS50%20-%20Check%20Flange.pdf

Perhaps they made the default setting more sensitive to occlusion after the UDL and other complaints of occlusion problems that the alarm wasn't sensitive enough.  There is apparently a selectable 'low occlusion pressure setting'.
Logged
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
monrein
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« Reply #15 on: March 22, 2011, 03:21:08 PM »
Great  news tyefly!  Good luck with it all.   :cuddle;
Logged
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
willowtreewren
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« Reply #16 on: March 22, 2011, 04:05:36 PM »
Wonderful news and I hope that each day you have better and better results!  :2thumbsup;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #17 on: March 23, 2011, 07:08:16 PM »
A successfull night at nocturnal.....  I slept well and had my whole day  today to do everything but Dialysis.... What will I do with all this time.....   

My clinic and I decided that I would do dialysis six nights a week  (48 hours per week )for 30 days and then drop to 5 nights. (40 hours per week )  and then maybe  ( probably ) down to 4 nights a week.... 

That will be 32 hours of dialysis per week  and that is still more than what I was doing six days a week ( 27 hrs  per week )  before  I started nocturnal...    this is going to work out great.....  only one thing that I can say that would be  better ... would be a transplant......  which will come in time.....  thats my next goal....
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
willowtreewren
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My two beautifull granddaughters

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« Reply #18 on: March 23, 2011, 07:12:19 PM »
 :clap; :clap; :clap; :clap; :clap;

This is great to read!

Made my day!

 :2thumbsup;

Aleta
Logged
Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
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« Reply #19 on: March 23, 2011, 07:40:24 PM »
Oh, this is just fantabulistic!  I am so stoked because what you are doing is exactly what I am hoping to do!  I am so excited for you!!!!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Bill Peckham
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« Reply #20 on: March 23, 2011, 08:14:27 PM »
Fantastic.

One option to consider is the 2 day on 1 day off schedule. It ends up being equal to 4.66 days a week; one week in three you end up dialyzing four times, two weeks in three you dialyze five times. I do this and mix in three days in a row (or more (sometimes less)) depending on travel/work/life.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
boswife
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us and fam easter 2013
« Reply #21 on: March 24, 2011, 10:16:52 AM »
Im ready for todays update :-)   
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
tyefly
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This will be me...... Next spring.... I earned it.
« Reply #22 on: March 24, 2011, 01:23:40 PM »
Todays Update....  I dialysized from 10pm to 6 am  with no problems.... I didnt have to listen to alarm # 5 (because I turn it off and it doesnt work anymore.)  but I still had alarm 21 only a few times....  I would like to get rid of that too...   This alarm goes off if your pressures change and sometime when I change positions in bed I see that it goes off.... Your pressures go up and down depending on what your doing ...like the difference between laying down , sitting up or standing up. ..So Alarm 21 just tells you that pressures are changing....anyway..

I slept very well and was only awake a few times last night....   it kind of reminds me of when I use to sleep with my daughter when she was born..( 25 years ago)  I would hold so still and listen in my sleep.....if she moved I was awake... I slept with her for a few years and then she go her own bed...LOL   she was my last baby....LOL

I am going to like this way more than sitting in the chair and doing dialysis after I have already slept.... I think I will get more active now..... its been hard for me to sit for any length of time... I am one of those who never sits down..I hate movies cause I cant sit there that long.... 

and just think    Summer is right around the corner....  life is good....  I wish more people could do what I am doing... 

 
Logged
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.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
MooseMom
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« Reply #23 on: March 24, 2011, 01:31:39 PM »
This story just gets better and better!!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
willowtreewren
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My two beautifull granddaughters

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« Reply #24 on: March 24, 2011, 04:56:39 PM »
This is fantastic!  :2thumbsup;

We used to get those #21s after I had fixed a high pressure problem. Like, yeah, I know the pressure is dropping, duh, because I WANT it to drop!

I would call tech support and see if there is a way to make the sensor less sensitive....

Keep up the great reports!  :yahoo;

Aleta
Logged
Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
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