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Author Topic: Telling your story survey  (Read 3881 times)
kitkatz
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« on: July 25, 2017, 11:36:53 AM »

Hi there,

Ivy, lead anthropologist at Muse Storytelling, wants to hear your CKD story! Whether you’ve just been diagnosed, or you’ve long been on dialysis, she wants to hear from you! She’s looking to speak with as many people as possible to better understand the CKD experience, and it’s easy to get involved. 

You can follow this link to fill out a quick survey, then sign up to be contacted for an interview. Participation is voluntary, and those chosen for an interview will be compensated for their time.

https://musestorytelling.typeform.com/to/OgVaYu
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lifenotonthelist.com

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
smartcookie
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LMSW

« Reply #1 on: July 25, 2017, 12:58:42 PM »

Just curious, what is she going to do with the information? 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
iolaire
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« Reply #2 on: July 25, 2017, 08:00:07 PM »

Just curious, what is she going to do with the information?

If you start the survey it says it's funded by a large insurance company who wants to develop free programs to help patients. Sounds like duplication of the education provided in center but might be helpful if you were in a smaller center not associated with the major chains.  I personally don't like my insurance co calling me to as basic questions that I covered years ago with my nephrologist.

I did survey but it feels like market research not content that would be a documentary or short like it appears they also make. If you plan to do the survey I recommend doing it on a computer and saving your answers since it does walk you through your personal story. I did it on phone and would have liked to keep my responses.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
iolaire
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« Reply #3 on: July 25, 2017, 09:09:11 PM »

Also if they call you back or talk to you in Portland they will pay you $20. I offered to be contacted but would feel better if this didn't just seem like a corporate research gig.  Obviously being part of some sort of podcast or documentary to help outs would be much more rewarding. 
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Tora66
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« Reply #4 on: September 20, 2017, 10:59:28 AM »

Well, it'll be four years of dialysis for me come October 13, 2017.Hanging in there. Came close to getting a kidney last October. Prepped and everything then sent home. Gotta call this morning while at dialysis. Fourth in line. Not getting my hopes up.






Sp mod Cas
« Last Edit: September 21, 2017, 01:10:16 AM by cassandra » Logged
iolaire
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« Reply #5 on: September 20, 2017, 11:08:23 AM »

FYI someone called from this survey about three weeks ago and left a message.  I keep meaning to call back and setup a time to talk after work, they should be in a West Coast time zone so that should work.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: September 20, 2017, 11:29:50 AM »


Gotta call this morning while at dialysis. Fourth in line. Not getting my hopes up.


You mean a call for a kidney?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Charlie B53
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« Reply #7 on: September 20, 2017, 06:27:55 PM »


I got a call, arranged for her to call me during treatment, I have lots of time then.

She did.  We spent a while, covered most everything.

Seems like a nice enough Lady.
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