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| | |-+  So thrilled!!! Starting Nocturnal NxStage!
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Author Topic: So thrilled!!! Starting Nocturnal NxStage!  (Read 3292 times)
KatieV
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« on: February 14, 2013, 11:32:44 AM »

I've posted before about trying to get permission from my center to do Nocturnal dialysis with my NxStage cycler.  After months of indecisiveness, I finally got a concrete answer of "No" from them.  I decided I couldn't keep living the way I've been - it's too stressful, not enough sleep, and I don't have time to do anything but work, dialysis, and sleep! 

I had heard about a center in New York that did Nocturnal HomeHemo, so I called them up.  Last Monday, my husband and I visited the center, met the team, and started the process of switching my care.  They have been super fast about getting the ball rolling!  I have a home visit on Monday and we go down on Thursday for two days of training on the heparin pump & securing lines.  They do remote monitoring through the internet.

It is a 2.5 hour drive one way that we'll have do once a month, but it will give us about 20 "free" hours a week.  I will be able to make dinner (my husband is getting sick of cooking) and work on my projects!  I am so excited!  It has been feeling like I haven't had a life.  I'm also looking forward to possibly getting off my binders and blood pressure meds.     
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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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boswife
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us and fam easter 2013

« Reply #1 on: February 14, 2013, 11:44:05 AM »

 :yahoo;  couldnt be happier for you  :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
noahvale
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« Reply #2 on: February 14, 2013, 01:36:02 PM »

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« Last Edit: September 21, 2015, 06:51:54 PM by noahvale » Logged
chook
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Born to be a Granma!

« Reply #3 on: February 14, 2013, 05:56:16 PM »

All the best with it! Keep us updated on how you go.
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: February 15, 2013, 01:32:53 AM »

 :2thumbsup; Hope it works out great!
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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
M3Riddler
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« Reply #5 on: February 21, 2013, 03:48:51 PM »

I've posted before about trying to get permission from my center to do Nocturnal dialysis with my NxStage cycler.  After months of indecisiveness, I finally got a concrete answer of "No" from them.  I decided I couldn't keep living the way I've been - it's too stressful, not enough sleep, and I don't have time to do anything but work, dialysis, and sleep! 

I had heard about a center in New York that did Nocturnal HomeHemo, so I called them up.  Last Monday, my husband and I visited the center, met the team, and started the process of switching my care.  They have been super fast about getting the ball rolling!  I have a home visit on Monday and we go down on Thursday for two days of training on the heparin pump & securing lines.  They do remote monitoring through the internet.

It is a 2.5 hour drive one way that we'll have do once a month, but it will give us about 20 "free" hours a week.  I will be able to make dinner (my husband is getting sick of cooking) and work on my projects!  I am so excited!  It has been feeling like I haven't had a life.  I'm also looking forward to possibly getting off my binders and blood pressure meds.     

Katie,

This shows that you care about quality of your treatment. Not many folks would drive the extra miles to get better quality dialysis.   When I had a move from PA to VA, I drove back to PA for approx 6 months until the clinic I was going to switch to in VA was able to provide NxStage. I was their first patient on NxStage and the nurses etc had to be properly trained to cover me.   The 380 miles each way was worth traveling to be able to stay on NxStage until the other clinic was ready for me.   
Congratultions on holding your ground... Many people would say they woudl switch untit it actually comes down to make the move....
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