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Author Topic: Otto in the paper  (Read 2390 times)
lola
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I can fly!!!

« on: April 11, 2009, 07:13:33 AM »

Some how the Star Tribune(the big paper for MN) found out about Otto and trying to find him a donor and they called and did a "phone interview" with me and now on Tuesday they are sending a Medical reporter and photographer to our house. They want to talk about the need for living donors, paired donors and Dialysis. You know me I'll try to get IHD in there since this is my family who has taught  me sooooooooo much. They said they may also add our caringbridge site so people can follow us through our journey, they also said it would be cool if someone reading turned out to be a match and they could follow the process. Now with 100% pra doubt that will happen but at least I get to try to help educate. Hope all goes well and they really put it in the paper.
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paris
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« Reply #1 on: April 11, 2009, 07:17:19 AM »

That is very exciting!  You will be a great person to interview. You have so much knowledge and have experienced every step of kidney disease.  Let us know how it goes.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
willieandwinnie
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« Reply #2 on: April 11, 2009, 07:52:18 AM »

 :yahoo; lola  :2thumbsup; Can't wait to follow this. You make us soooooooo proud.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Romona
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« Reply #3 on: April 11, 2009, 09:50:55 AM »

 :bandance; Wonderful!
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okarol
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« Reply #4 on: April 11, 2009, 10:17:48 AM »

 :thumbup; That's great lola! I know you'll do a wonderful job represent patients!
Whenever I met a reporter I'd give them a printed sheet of some facts (saves them research and helps them get the info correct.) Also a page of resources, like IHD for patients and caregivers, livingdonorsonline. for potential donors, and the Renal Support Network for more education. They usually like to include the NKF, but they are focused on preventing kidney damage, which for a patient on dialysis is like shutting the barn door after the cow got out. And UNOS is often mentioned too, which is fine for data on wait lists, but they focus on deceased donors and not a good place for living donors to learn more.
Let us know how it goes! You never know where it could lead - I believe in miracles!  :cheer:
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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
charee
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« Reply #5 on: April 11, 2009, 04:27:55 PM »

 :bandance; Thats great , good luck :cuddle;
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Home Hemo  18 months
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from my beautiful sister
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Live donors rock
thegrammalady
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« Reply #6 on: April 11, 2009, 04:54:43 PM »

very nice
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lola
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« Reply #7 on: April 13, 2009, 08:42:32 AM »

:thumbup; That's great lola! I know you'll do a wonderful job represent patients!
Whenever I met a reporter I'd give them a printed sheet of some facts (saves them research and helps them get the info correct.) Also a page of resources, like IHD for patients and caregivers, livingdonorsonline. for potential donors, and the Renal Support Network for more education. They usually like to include the NKF, but they are focused on preventing kidney damage, which for a patient on dialysis is like shutting the barn door after the cow got out. And UNOS is often mentioned too, which is fine for data on wait lists, but they focus on deceased donors and not a good place for living donors to learn more.
Let us know how it goes! You never know where it could lead - I believe in miracles!  :cheer:

Thanks Karol
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lola
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« Reply #8 on: April 14, 2009, 09:32:02 AM »

Well we just got done, They found us on Livingdonors.com. They talked about living donors and why we feel more people don't come forward, and what I'm doing to try to find Otto a donor. They have a few more families they are going to talk to and they will let us know when the story will be in the paper.
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willieandwinnie
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« Reply #9 on: April 14, 2009, 09:41:48 AM »

 :yahoo; lola. Keep us updated.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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« Reply #10 on: April 14, 2009, 10:11:40 AM »

Livingdonors.com ? The NKF site?
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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
lola
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I can fly!!!

« Reply #11 on: April 14, 2009, 10:33:25 AM »

Livingdonors.com ? The NKF site?



My bad, livingdonorsonline.com
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: April 14, 2009, 10:39:19 AM »

 :thumbup; Thanks lola, I always mix them up... and I am an admin on LDO!  :P
 :rofl;
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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
Sluff
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« Reply #13 on: April 14, 2009, 12:02:41 PM »

No rest for the wicked. Thanks for being such an advocate.
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paddbear0000
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« Reply #14 on: April 14, 2009, 11:08:59 PM »

 :clap;  Don't forget to post the article when it's published! We want to see!!
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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