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Author Topic: denied access or removed from transplant list?  (Read 3497 times)
health reporter
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« on: November 20, 2013, 10:46:23 AM »

Hello!

I am a health reporter with the Bend Bulletin, a daily newspaper in Bend, Oregon. I'm working on story about some government regulations that may be serving as a barrier to transplant. I'm looking for individuals who transplant centers are unwilling to list because they're too old or too high risk. Also would like to talk to patients who couldn't get listed at a transplant center near them, so had to travel to another center who was willing to list them.

If that sound like you, and you'd be willing to talk to me, please email me at health@bendbulletin.com.

Thanks!
Markian Hawryluk
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Bend Bulletin
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health reporter
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« Reply #1 on: January 06, 2014, 09:18:55 AM »

Just wanted to let you know that my series on organ transplants is running this week. The first story ran yesterday with two more coming this week.

You can read all the stories here: www.bendbulletin.com/transplants

Markian
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Zach
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"Still crazy after all these years."

« Reply #2 on: January 06, 2014, 02:43:25 PM »

"… thousands of viable organs are thrown out each year…"
Do you have actual facts, not opinions, to back up those claims?
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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."
jeannea
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« Reply #3 on: January 06, 2014, 03:37:20 PM »

I'm with you Zach. How do we know organs are being thrown out? This article says kidney transplants are down but doesn't explore if less people are willing to donate. It is irresponsible to just say they're being thrown out with nothing to back that up.

CORRELATION DOES NOT EQUAL CAUSATION.
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Ninanna
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« Reply #4 on: January 06, 2014, 07:09:37 PM »

I actually read a good article recently that talked about inefficiencies in cadaver donor kidneys and how it is believed around half of all kidneys that are thrown out are usable and can and would have benefits for people. It covered everything from people waiting for a perfect kidney, multiple rejections of the kidney by patients creating a self fulling prophecy of an undesired kidney, an over reliance on kidney biposies, as well as pressure from government regulators to provide the highest possible outcome numbers.

http://mobile.nytimes.com/2012/09/20/health/transplant-experts-blame-allocation-system-for-discarding-kidneys.html?ref=us

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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 #5 on: January 07, 2014, 05:23:10 PM »

That's a frustrating article. They don't chase down the reasons. For the one kidney, they claim 10,000 people turned it down. But they don't give even one reason why someone would have turned it down. There has to be some reason why 10,000 people would not want that transplant. I know I turned down a kidney. They told me she comitted suicide and had a history of drug use and prostitution. I don't know if anyone ever took it but I thought I made the right decision. And it doesn't explore the other side of throwing out organs. Are hearts and lungs only offered if they're in good shape or are people offered the lungs from a 40 year smoker and forced to make a decision? I wish journalists would do thorough reporting.
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Ninanna
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« Reply #6 on: January 09, 2014, 03:57:54 PM »

That's a frustrating article. They don't chase down the reasons. For the one kidney, they claim 10,000 people turned it down. But they don't give even one reason why someone would have turned it down. There has to be some reason why 10,000 people would not want that transplant.

It's true they did not say why (and the people who turned it down might have all had a different reason) but it really makes you wonder when his liver and his left kidney went to someone else.  Especially because the article described him as a fit 36 year old who died from smoke inhalation in a fire.   
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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
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