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Author Topic: I have a great opportunity to advocate for NxStage  (Read 4267 times)
Adam_W
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Me with Baron von Fresenius
« on: May 11, 2009, 08:14:15 PM »
In November, The Indiana Kidney Foundation is having a convention of nephrologists, nurses, techs, etc. to present and discuss different dialysis related topics. There will be a presentation about NxStage, and I will be the focus of it, and I will actually be dialyzing right there on the stage! This will give us the chance to not only talk about NxStage, but to give dialysis professionals, particularly nephrologists, the opportunity to actually see how NxStage and home/self dialysis works. Since it's a formal event, my nurse and I were joking about having me dialyze waring a tuxedo. I'm really looking forward to this, because the more doctors and other professionals know about this treatment, the more they can offer it to their patients. I'll post updates as they come.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Zach
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"Still crazy after all these years."
« Reply #1 on: May 11, 2009, 08:15:13 PM »
 :2thumbsup;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: May 11, 2009, 09:47:03 PM »

Great! We'll have to get you a "I Hate Dialysis" lapel button to wear!
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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 -
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Bill Peckham
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« Reply #3 on: May 11, 2009, 09:51:52 PM »
 :thumbup;
Do you have any details? Are you going to get on while on stage and then finish the run while other speakers come and go? Will you have to have a helper or will you do it as a self dialyzor?

Now I'm thinking that this should be a feature at these conferences - a group of NxStage dialyzors on stage during the whole program - like the chorus in Shakespeare.
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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
Dan.Larrabee
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Dialysis Dan
« Reply #4 on: May 11, 2009, 11:05:20 PM »
Way to go Adam, thats so cool. Make sure you post some more Youtube videos of the event.
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
jbeany
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Cattitude
« Reply #5 on: May 12, 2009, 10:20:08 AM »
 :clap;

That's great, Adam!

What's the appropriate stage salutation here?  Not break a leg. . . bust a clot?
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Sunny
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Sunny
« Reply #6 on: May 12, 2009, 12:08:02 PM »
What a wonderful thing to do. The medical profession needs education on NxStage. I wish my neph would go. She doesn't know a darn thing about it.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
paul.karen
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« Reply #7 on: May 12, 2009, 12:19:28 PM »
 :2thumbsup;

Good for you Adam.

The scary part for me is reading how many nephs dont know about or choose not to understand what NXstage is all about.  I would think they would be up to date on anything new for Dialysis.  And well NXstage isnt new :stressed;....

I  :clap; what you are doing.  Show these professionals that they truly dont KNOW IT ALL like they would like to think they do.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
paris
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« Reply #8 on: May 12, 2009, 01:14:33 PM »
This is great Adam!  Marvelous opportunity for you and the medical professionals.   :2thumbsup;
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willowtreewren
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My two beautifull granddaughters

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« Reply #9 on: May 12, 2009, 01:53:38 PM »
Great News, Adam!  :clap;   :clap;   :2thumbsup;

I hope you can get a video tape. this will help others get better "eddicated" about this great HD option.

Aleta :yahoo;
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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. :)
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