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Bill Peckham
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« Reply #25 on: April 01, 2008, 10:13:50 PM »

I don't want to hear about stockpiling, I had a weeks worth of emergency supplies - it's just that this problem has been over a week ongoing.

How many people have a week? This is a clear example why having extra supplies makes sense.

The value of predictability can't be overstated.

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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
Meinuk
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« Reply #26 on: April 02, 2008, 06:05:16 AM »

How many people have a week? This is a clear example why having extra supplies makes sense.

Great, now I am a cautionary tale...
« Last Edit: April 02, 2008, 10:01:36 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
kitkatz
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« Reply #27 on: April 02, 2008, 09:28:48 PM »

Love ya anyway Meinuk!  Cautionary tale or not!

I say give them absolute hell until they get things fixed!
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Russ
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« Reply #28 on: April 03, 2008, 06:17:06 PM »

I always keep bags as a backup for the Pureflow because you can bet the farm there will be a problem with it at some point during the month.  I ran out of backup bags last month and asked for a resupply twice from Nxstage but never got them until a 3rd phone call was placed.  I ended up going in center on a Saturday (my supporting clinic is closed on Sat.) for treatment because my Pureflow failed.
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Meinuk
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« Reply #29 on: April 05, 2008, 07:34:38 AM »

Thanks Kit (it has been a rough week)

I got the emergency supplies on Thursday - of course NxStage refuses to send me tracking numbers, so I spent all of Thursday making contingency plans for the weekend.  (they make a great machine - why can't they get their customer service in order?  Very frustrating.)

Oh well, we are at their mercy.  I'm happy that I can dialyze at home, I guess that I'll have to put up with their inability to communicate with customers. I've already ranted about their lack of respect in my other thread, I don't want to be THAT poster who belabors a point.  I will simply say that the achillies heel of NxStage is their shipping and customer service (This is a distinction from their Technical Support - when you do finally get through to Technical Support, I have found that they are very helpful - my pureflow disaster was a series of unfortunate events, that I firmly believe were an abnormal occurrence). 
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
okarol
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« Reply #30 on: April 05, 2008, 09:40:40 AM »

I hope these kinks get ironed out - imagine where you'd be if you weren't assertive? I admire you for making this work!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
jbeany
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« Reply #31 on: April 05, 2008, 10:04:12 AM »

I hope these kinks get ironed out - imagine where you'd be if you weren't assertive? I admire you for making this work!

The way I see it, the only patients really qualified for the NxStage home hemo absolutely have to be capable of standing up for themselves.  We get to lead the way, and beat the company into shape for the quieter, less aggressive patients who will eventually follow us! 

Hang in there, Meinuk!
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