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Author Topic: How I spent World Kidney Day - with photos - "Who Lives?"  (Read 8866 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: March 13, 2009, 05:10:49 PM »

Last night I went to the premiere of the play "Who Lives?" produced by Lori Hartwell and the Renal Support Network. The small theater was great for this intimate subject.
The play was well done - it really gave you an idea of the ethical and moral issues faced by the "Life and Death Squad" who determined which small pool of people would get dialysis, and who would not. You also got a sense of the devastation felt when a patient was given the diagnosis of END STAGE renal failure. It was basically a death sentence.
Bill Peckham and his mom Susan were there. It was great to see them. A big surprise was the arrival of Anna Bennett (IHD Member meinuk) all the way from New York!
We had dinner before the play and I got to meet  Bonnie Parks Markuson and her sister Diane. They came down from the Seattle area for the play. It was great to hear Bonnie's story. She's a real inspiration. She was a teenager when the dialysis committee selected her to be saved and granted her dialysis. You can read her story here "The Chosen One" http://www.kidneytimes.com/article.php?id=20070417033027

Photos:
Theater
Bill Peckham and mom Susan
Lori Hartwell and Sharon Pahlka and  Bonnie Parks Markuson
Tim and Robert from the Renal Support Network
Bill, Anna and Susan
Me, Sharon and Lori

« Last Edit: March 15, 2009, 09:57:35 PM by okarol » Logged


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
monrein
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Might as well smile

« Reply #1 on: March 13, 2009, 05:31:05 PM »

Great shots Karol.  What a great way to spend the day.
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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
Zach
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« Reply #2 on: March 13, 2009, 05:35:01 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.

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« Reply #3 on: March 13, 2009, 05:55:31 PM »

I'm glad you got to attend Karol.

                                     :beer1;
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kitkatz
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« Reply #4 on: March 13, 2009, 06:09:33 PM »

Cool. I have a date with the play Sunday coming up. I am taking a friend of mine who is on dialysis also. Thanks to Karol for procuring the tickets. It made things so much easier for us.
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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 #5 on: March 13, 2009, 10:26:53 PM »

Cool. I have a date with the play Sunday coming up. I am taking a friend of mine who is on dialysis also. Thanks to Karol for procuring the tickets. It made things so much easier for us.

After the play on Sunday they are having a "Talk Back" where some of the actors and patients will stay after the show and have an open discussion with the audience.
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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
Wattle
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« Reply #6 on: March 14, 2009, 12:40:01 AM »

 :beer1;  Great Photos Karol.

On a side note.... I loved the pic of Bill, Anna and Susan. Anna you look fantastic! I am so happy for you.   :cuddle;
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June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Romona
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« Reply #7 on: March 14, 2009, 04:51:47 AM »

 :2thumbsup; Thanks for sharing the photos. 
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #8 on: March 14, 2009, 12:04:27 PM »

Anna does look great!
Here's Bill's review of the play http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/who-lives-gets-the-job-done-.html
« Last Edit: March 14, 2009, 12:21:01 PM by okarol » Logged


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
David13
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A meow massages the heart.

« Reply #9 on: March 14, 2009, 12:11:44 PM »

Spectacular!  Thanks for shaing, Karol! 
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« Reply #10 on: March 14, 2009, 09:34:57 PM »

Wish I could have been there to visit with my Taxi driver again. Thanks Karol for wearing the shirt you had on.  :2thumbsup;
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paddbear0000
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« Reply #11 on: March 14, 2009, 09:53:53 PM »

Thanks for the great pictures Karol! Everyone looks  fantastic. I would love to see the play, but it's going to have to travel to Ohio for that to happen!
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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.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: March 14, 2009, 10:08:08 PM »

Thanks Karol for wearing the shirt you had on.  :2thumbsup;

That reminds me - a young woman came up to me before the show started, looked at my IHD hoodie and said "I had to ask, is that site for real?" I told her "Yes! Come join us!" I hope she does!
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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
Slywalker
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« Reply #13 on: March 15, 2009, 08:32:41 AM »

Thanks for sharing the pictures.  Good looking crew.

Sandyb

 :bunny:
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #14 on: March 15, 2009, 09:57:09 PM »

Jenna and I went to the play today - and saw Kitkatz with her friend too. I loved seeing it again, subtle differences from the Thursday night performance made it better for me. Afterward there was a Q&A with Lori Hartwell, Bonnie (the teen who was one of the chosen few), the director, and cast members who are kidney patients. It was great to hear how it came together, and the personal stories of the participants. The other cast members were there too, and seemed as interested and supportive as you'd expect from close friends. It was really heart warming.

Kitkatz will post more photos.

You can read meinuk's review here: "Who Lives? We do." http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/who-lives-we-do.html
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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
Bill Peckham
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« Reply #15 on: March 16, 2009, 09:17:50 AM »

The play got a big thumbs up and was selected as the pick of the week here
http://www.reviewplays.com/03-09-wholives.htm
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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
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Zach
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"Still crazy after all these years."

« Reply #16 on: March 16, 2009, 11:01:42 AM »

The play got a big thumbs up and was selected as the pick of the week here
http://www.reviewplays.com/03-09-wholives.htm

The only problem is at the end of the review where the reviewer doesn't seem to understand that Medicare pays for dialysis today:

"Now all we have to worry about is if the insurance company will deem it a necessary procedure and will agree to pay for it, or refuse to cover it. Is there a committee for that, I wonder?"

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."
kitkatz
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« Reply #17 on: March 16, 2009, 03:04:51 PM »

Here are the pics from the play. The play makes you think. However I did not like the ending.



These are from the round table discussion after the play.
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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
kitkatz
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« Reply #18 on: March 16, 2009, 03:06:26 PM »

More after play pics.
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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
Zach
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"Still crazy after all these years."

« Reply #19 on: March 16, 2009, 03:06:45 PM »

Great pics, Kitkatz!

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."
kitkatz
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« Reply #20 on: March 16, 2009, 03:09:08 PM »

More pics...

1. My friend Jennifer, Me, the actor from the play and Jenna.

2 and 3 Jenna and Okarol
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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
kitkatz
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« Reply #21 on: March 16, 2009, 03:37:24 PM »

My friend and I wrote a review of the play for her Fresenius Center.

WHO LIVES? REVIEW
  We recently went to see the play “Who Lives?” at the Pico Playhouse in Los Angeles. It was sponsored by RSNHope.com. Lori Hartwell worked hard to put together this presentation about the committees that were formed in Seattle, Washington in the 1960s.  This was a dramatic presentation about who would be the first to be put on the new dialysis machines.  It was a choice between going on dialysis or death for the early patients.  The committees had to make choices on whether a patient was a productive member of society and would benefit from the treatment.
     The play made you think as it went along.  It showed the differences between today’s dialysis treatments and what happened in the near history of dialysis. The choices made yesterday for those early dialysis patients changed history.  The play is a stirring representation of the way things were for the 1960s patients.  The play touches on subjects such as dialysis history, choices, prejudice and family, as well as the emotional states the people involved find themselves in.
     Several of the actors are transplant patients.  They chose to be in the play to help to present part of the history of something close to their hearts. One of the actors is Dale Davis - he got a kidney from KABC news anchor Phillip Palmer.
     Tickets can be purchased at the box office of the theater on Pico Blvd, or through RSNHope.org.   It is a worthwhile use of your time.  It has been picked as THE play to see in Los Angeles this week!

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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
willieandwinnie
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« Reply #22 on: March 16, 2009, 03:49:32 PM »

Thanks for sharing everybody. I wish they have it all over the country.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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