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Author Topic: Social Media Stole My Kidney  (Read 4035 times)
Ninanna
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« on: June 28, 2014, 01:26:34 PM »
Social Media Stole My Kidney is a documentary to raise organ donor awareness.  Right now they are fundraising so they can finish editing the film to present at film festivals and they need our help!  If you watch the trailer you will see our very own Okarol.


https://www.indiegogo.com/projects/social-media-stole-my-kidney--2 
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
jeannea
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« Reply #1 on: June 28, 2014, 03:44:35 PM »
Sounds interesting.
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iolaire
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« Reply #2 on: June 29, 2014, 07:02:44 AM »
I don't like the title, it sounds negative.  He gave up his kindey voluntarily and benefited from it so much he is making a movie.
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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.
Ninanna
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« Reply #3 on: June 29, 2014, 11:33:18 AM »
She*

I can see why you might think the title is negative. A lot of people think the name I Hate Dialysis is negative too. But they both grab people's attention, and organ donation needs all the attention it can get IMO. And I doubt very many people will walk away feeling negative about organ donation after watching this documentary.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: June 29, 2014, 12:43:15 PM »
The title is from Amy Donahue, the film's creator. She donated a kidney after seeing a tweet from a social media acquaintance, whose mom needed a transplant.
She helped save a life, giving her kidney to a woman in Phoenix.
Amy is a stand up comedian, and now an advocate for living donation.
She's spreading awareness and hoping others will become living kidney donors.
Amy drove all over the US and Canada to interview donors. She stopped in to see us on her way, and interviewed Jenna and I, as a family who waits.
Thanks Ninanna, for sharing this!
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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
iolaire
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« Reply #5 on: June 30, 2014, 06:43:06 AM »
Quote from: Ninanna on June 29, 2014, 11:33:18 AM
She*
Sorry, I don't watch videos on sites like that.  I knew as I wrote it that I might be getting the gender wrong.
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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.
Ninanna
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« Reply #6 on: June 30, 2014, 07:40:54 AM »
Quote from: iolaire on June 30, 2014, 06:43:06 AM
Quote from: Ninanna on June 29, 2014, 11:33:18 AM
She*
Sorry, I don't watch videos on sites like that.  I knew as I wrote it that I might be getting the gender wrong.


You don't watch videos on YouTube?

Well, you really have to watch the trailer to get a sense of the project and it's human connection, so you are missing out!
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Ninanna
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« Reply #7 on: June 30, 2014, 07:43:54 AM »
Sorry for the double post.
« Last Edit: June 30, 2014, 07:45:49 AM by Ninanna » Logged
Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
iolaire
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« Reply #8 on: June 30, 2014, 07:45:47 AM »
Quote from: Ninanna on June 30, 2014, 07:40:54 AM
Quote from: iolaire on June 30, 2014, 06:43:06 AM
Quote from: Ninanna on June 29, 2014, 11:33:18 AM
She*
Sorry, I don't watch videos on sites like that.  I knew as I wrote it that I might be getting the gender wrong.


You don't watch videos on YouTube?

Well, you really have to watch the trailer to get a sense of the project and it's human connection, so you are missing out!

I generally find the videos to explain something a waste of time and try to just read the summary text.  Rarely have I found that video content is far superior to narrative text and reading takes MUCH less time that watching some video.
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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.
Zach
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"Still crazy after all these years."
« Reply #9 on: June 30, 2014, 08:52:51 AM »
The title of the film is a play on the phrase, 'You stole my heart.'

 8)
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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."
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