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Author Topic: I was asked to present an award  (Read 3234 times)
okarol
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« on: May 04, 2010, 11:29:33 PM »

The American Transplant Congress convention was the last 4 days in San Diego. I went down there on Saturday, got to meet two members of the other forum I admin for, Living Donors Online, one is a man who was an altruistic non-directed donor at 67 years old! The other was Jennifer Martin from the National Kidney Foundation, who I have "known" online for years, but never met in person. They were both great and it was really fun to have dinner with them. My main reason for attending the conference was because I was asked to present an award to Lori Hartwell at the National Kidney Registry Recognition Reception. Here are some photos and my speech.
.........................
          Karol Franks - National Kidney Registry – San Diego, CA - May 3, 2010

I want to thank Garet Hil for all he does for patients and donors, and for inviting me to participate by presenting the Patient Advocacy Award to Lori Hartwell.
 
But first, Lori, I’d like to tell them a little about you. Lori has been a kidney patient since age two and has experienced many years of dialysis, both peritoneal and hemo. She has had 3 kidney transplants, the last one of which has given her 20 years of freedom.
 
Often when a patient like Lori gets a transplant they hurry back to the business of living. Most are happy to leave the ordeal far behind. But Lori devoted herself to helping other patients. She founded the patient-run Renal Support Network that provides many programs: her nationwide Patient Lifestyle Meetings are well attended, and she does interviews for KidneyTalk, an online radio show heard all over the world.  Her HOPE-LINE provides toll-free patient support, and she started weKAN, a patient-advocacy group working for positive kidney health care legislation. For the last 10 years Lori's annual Renal Teen Prom has provided a special evening for kidney teens that may miss normal teenage activities due to their disease.
 
I feel fortunate to have met Lori. In 2001 my 15-year-old daughter Jenna was diagnosed with kidney failure. It was sudden and unexpected so we began looking for a support group. Someone suggested I contact Lori, because she had been a teenage kidney patient, so I called and left a message. She called me right back and we spent an hour on the phone. I knew SHE knew what Jenna was facing, and she invited us to her free patient meeting the following week. It was a great introduction into the world of kidney disease. We learned about fistulas, renal diets and transplant waiting lists, UNOS, and living donors. We learned about hope.
 
Jenna was soon on dialysis, so I began researching transplant options. I wanted to donate my kidney so I joined Living Donors Online, a support group for living donors. Unfortunately it turned out that I was the wrong blood type. Other friends and family came forward, but no one was found suitable.  We posted our story on Living Donors Online, and were contacted by potential donors from all over the world. As a result, eventually, we met an altruistic living donor, Patrice, which resulted in a successful transplant for my daughter, not far from here, at Scripps Green Hospital in La Jolla. Lori's encouragement to Jenna, and support for our family, inspired us to never give up.
 
 Lori seems to know everyone in the kidney world. She writes articles and books, speaks all over the world, and is constantly thinking of creative ways to find solutions for patients, and then she makes them happen. Her energy and enthusiasm is infectious. With courage and imagination, she has inspired many patients to help others as well.
 
Her OWN EXPERIENCE as a patient, her DETERMINATION, and her VISION make her the ideal patient advocate -- One kidney patient helping another.
 
For all of this I, and many others, owe Lori a great debt of gratitude.  I am honored to present Lori Hartwell with the NATIONAL KIDNEY REGISTRY'S PATIENT ADVOCACY AWARD.
...................

Photos:
1. Lori and I
2. Lori and Garet Hil, founder of the National Kidney Registry
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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
RichardMEL
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« Reply #1 on: May 05, 2010, 12:21:47 AM »

Karol, you rock (Lori does too of course!). I couldn't think of anyone more appropriate to present the award.

Congratulations!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Jean
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« Reply #2 on: May 05, 2010, 12:26:14 AM »

Congratulations to you and Lori. Well written speech Karol. Good job!!!
 :thumbup;
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Mimi
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« Reply #3 on: May 05, 2010, 01:03:15 AM »

What a wonderful honor and wonderful speech.  You need some kind of award yourself, girl.  What a privilege to know you Karol.  You always seem to be there and know what to say. Congratulations!!!

Love, Mimi
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Darthvadar
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« Reply #4 on: May 05, 2010, 02:02:02 AM »

Congrats to Lori...

And well done, Karol....

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
paul.karen
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« Reply #5 on: May 05, 2010, 04:30:23 AM »

You must be able to stop time?

To do all you do for everyone you help and be a mother and wife all i can say is  :thx;..

Great speech.  Great award.  Great photo.

I award you the Bouncy  :bandance; award.
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Curiosity killed the cat
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Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
jbeany
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« Reply #6 on: May 05, 2010, 09:58:25 AM »

 :flower;  Very cool!
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monrein
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« Reply #7 on: May 05, 2010, 10:51:17 AM »

Great job Karol...and Lori too!   :flower;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
thegrammalady
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« Reply #8 on: May 05, 2010, 11:51:36 AM »

awesome  :clap; :clap; :clap;
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Rerun
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« Reply #9 on: May 05, 2010, 12:44:17 PM »

Do you admit that you are Admin for I hate dialysis . com or is that kind of awkward?

Great job!   :cheer:
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Sluff
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« Reply #10 on: May 05, 2010, 12:57:37 PM »

I have talked to Lori as well and was surprised that she personally returns phone calls. The way she told me was that she will not waste her time with someone who is not genuine in their quest to help others. She will have a secretary return the call otherwise. I feel very fortunate to know both Lori Hartwell and Karol. We are so lucky to have Karol on our Admin team. I can not begin to think where IHD would be with out her.

 :2thumbsup;

Glad to have known you Karol before you were so popular.  :rofl;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #11 on: May 05, 2010, 01:10:38 PM »

Do you admit that you are Admin for I hate dialysis . com or is that kind of awkward?

Great job!   :cheer:

I wear my pin and people ask about it, but it's too much info to put in the speech, and it wasn't about me anyway, but I wanted to link my experience to meeting Lori.
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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
Bajanne
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« Reply #12 on: May 05, 2010, 01:21:11 PM »

So proud of you, Okarol!!!  That was a great speech about a great person, given by a great person! :clap;
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I LOVE  my IHD family! :grouphug;
Sunny
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Sunny

« Reply #13 on: May 05, 2010, 01:47:32 PM »

What an honor for you. It is amazing how much you both have done for people with kidney disease.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
YLGuy
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« Reply #14 on: May 05, 2010, 04:37:21 PM »

awesome!  :thumbup;
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carla13
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« Reply #15 on: May 06, 2010, 01:43:58 AM »

yay! Congrats! Nice to have something positive happen!
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« Reply #16 on: May 06, 2010, 09:27:39 AM »

WAAAAAAAAAAAY Cool.  Nicely done Karol.   :bandance; :bandance;
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kitkatz
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« Reply #17 on: May 08, 2010, 09:51:28 PM »

Awesome.   Did the nerves go away?
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #18 on: May 08, 2010, 10:09:30 PM »

Not really. I have always been nervous about public speaking. I should do toastmasters, like you did Kitkatz.
When I got to the part in the speech about Jenna my voice began to quiver and I thought "Oh no, I am going to lose it" when out of the corner of my eye I saw Lori sprinting to the stage, climbing the steps and in a flash she was standing next to me, and gave me a hug. That calmed me down and I was able to finish without blubbering. She moved FAST for a tiny person who started dialysis again a couple of weeks ago!
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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
kitkatz
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« Reply #19 on: May 08, 2010, 10:10:39 PM »

That made the award even more special I bet.
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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
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