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Author Topic: extended is a go!  (Read 3635 times)
amanda100wilson
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« on: February 04, 2013, 02:13:59 PM »
i was planning on starting extended at the beginning of the year, but the corporate office for my dialysis unit, got to know about it and put the brakes on it.  Anyway, lots of communication later, they have finally agreed to support it.  not sure how much My input influenced their decision, but I am happy about it. :bandance; :bandance; :pics;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
big777bill
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« Reply #1 on: February 04, 2013, 02:36:58 PM »
 Congrats hope all goes well for you. :2thumbsup;
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
justjen321
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WWW
« Reply #2 on: February 04, 2013, 02:54:26 PM »
Way to use your voice!

When do you get to start?
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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/
SugarBear
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« Reply #3 on: February 04, 2013, 03:04:04 PM »
Sweet!  Glad it got work out.
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Xbox GT: ShonumShogun

CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In-Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo with Remote Viewers  May 2010
Received Transplant March 1, 2012
Transplant Failed in October 2017
Nocturnal Home Hemo with Remote Viewers December 2017
amanda100wilson
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« Reply #4 on: February 04, 2013, 04:41:27 PM »
as soon as they get all the stuff and as soon as I get my spare room sorted out.  Wonderi g if I can train a dog to be a therapy dog, to rouse Steve in the event of a problem?  since we are getting a new dog this year, wouldn't it be cool to have adog that I could take amywhere?
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
boswife
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us and fam easter 2013
« Reply #5 on: February 04, 2013, 07:09:49 PM »
Amanda, if you were to train your dog to 'assist' you and or hubby, (im not trying to be smartie here) and would be needed for your condition, you would want  to label it 'assistance dog, or service dog' if you want to be able to take everywhere. (states 'may' call it different names, but a " therapy" dog does not have the same allowances as far as i know)  Being kidney failure is considered a disabling condition, and dog very well can be trained to assist you,  you would have what you want.  I value these dogs and all they do for their humans, and if 'trained' for the job, and they pass the 'public access' testing and all, I  :bow; to each and every kind out there.  My dog is a 'natural' alert dog and has aloud me to go out on my own.  Otherwise, i would have to have someone with me during times of my illness.  God bless these creatures :)
Ohhhhhh,, and  :2thumbsup;  on your extended!!!!  I sort of envy you, but beings im not the one on it, and hubby doesnt want it, we're staying with daytimes.  I will be loveing hearing how you like it though.  You did great getting what you wanted!!!!!
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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
KatieV
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« Reply #6 on: February 05, 2013, 08:30:41 AM »
Amanda,

Please tell me how you talked them into it...I was just denied extended by the administrative board at my hospital.  I'm pretty disappointed. 

"They" say that with NxStage that dialysis doesn't "run" your life; however, I've found that because I work full-time there isn't much time for anything but work, dialysis, and ~6 hours of sleep a night.

Anyway, I'm very happy for you!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Angiepkd
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« Reply #7 on: February 05, 2013, 09:01:43 AM »
I would love to do extended, but don't have a center near me that supports it. Congratulations on winning that battle!  Please keep us posted on how it goes. Very interested in this option!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Desert Dancer
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« Reply #8 on: February 06, 2013, 05:25:29 AM »
Quote from: KatieV on February 05, 2013, 08:30:41 AM
Amanda,

Please tell me how you talked them into it...I was just denied extended by the administrative board at my hospital.  I'm pretty disappointed. 

"They" say that with NxStage that dialysis doesn't "run" your life; however, I've found that because I work full-time there isn't much time for anything but work, dialysis, and ~6 hours of sleep a night.

Anyway, I'm very happy for you!

"They" don't have any clue how dialysis affects a patient's life, NxStage or otherwise. "They" could not find a clue if they drenched themselves in clue pheromones and stood in the middle of a clue field during clue mating season. "They" do not have final say over your quality of life or the modality you choose. Don't take no for an answer. Find a different clinic if you're able and tell them you will take your money elsewhere if they won't co-operate.

It's YOUR life. It's YOUR health. "They" have no right to dictate how you will live, period.
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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.
KatieV
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« Reply #9 on: February 06, 2013, 06:02:30 AM »
Quote from: Desert Dancer on February 06, 2013, 05:25:29 AM
"They" don't have any clue how dialysis affects a patient's life, NxStage or otherwise. "They" could not find a clue if they drenched themselves in clue pheromones and stood in the middle of a clue field during clue mating season. "They" do not have final say over your quality of life or the modality you choose. Don't take no for an answer. Find a different clinic if you're able and tell them you will take your money elsewhere if they won't co-operate.

It's YOUR life. It's YOUR health. "They" have no right to dictate how you will live, period.

That's exactly what I did yesterday.  I called up the Rubin Center in New York and asked if they take out-of-state patients for their nocturnal homedialysis program.  They do and we have an appointment on Monday to visit and get more information!  They offer remote monitoring through the internet.

I drew labs last night for antibody/HLA testing for the Texas Transplant Institute.  I am working on getting into their paired exchange program (need a live donor tested).  It feels like my life is finally moving forward!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
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