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Author Topic: News Story: My childhood friend waited and waited for new lungs. Not lying down  (Read 265 times)
iolaire
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« on: May 13, 2019, 06:44:48 PM »

Since I was relatively healthy on dialysis my story was not that I would die without a transplant immediately so I enjoyed the initial premise of this story on the Washington Post. The story builds to the transplant recipient needs a lung which doesn't allow the recipient the freedom to live like a dialysis patient - so for that person it was a very urgent need for a transplant.  But I think its valid to promote that although transplants can be life saving, they also can delay long term damage from treatments that might prolong a person's life indefinitely but over time (or immediately) have serious impacts on one's quality of life. And in the end the transplant recipients are normal people who go on to hopefully live long normal lives - except for Aries Merritt and Selena Gomez who were stars before and after transplant.


My childhood friend waited and waited for new lungs. But not lying down.
Yes, organ transplants save people near death. But they also save people who ski, party, tour the Pyramids and rescue cats

https://www.washingtonpost.com/outlook/2019/05/09/my-childhood-friend-waited-waited-new-lungs-not-lying-down/?utm_term=.5605de1ec006
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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.
UkrainianTracksuit
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« Reply #1 on: May 15, 2019, 11:50:16 AM »

Any stories about CF patients touch me hard.

When I was a young kid (before kindergarten), I had my first extended hospital stay. An older girl became my first real friend... by that, I mean, a friend you made on your own. We had so much fun together and the days really passed because of her. She had a tracheostomy; I remember that clearly. She knew she had a problem because she'd say she had cystic fibrosis but I was at the age that I didn't know that we were sick. Long story short.... she passed away two years later. My mom told me, and I understood on the basis what that meant, but I didn't understand it in totality.

Now, I find myself thinking often of her and wondering about the life she could have lived or who she could have been. It's hit me even harder during transplant life because you often run into the odd lung transplant patient due to CF at support meetings. Young and wanting to do so much... and some making the most out of their time.

Prior to ever even thinking about transplant (but knowing I had CKD and my function was not so good), I watched the doc 65 Red Roses about a young girl with CF waiting for a lung transplant. She found support with other young chronically ill/transplant patients online. Long story short again, she passed away while waiting for a second set of lungs, and I cried at this news.

So, I'm just babbling now, making no sense. That's further proof that the majority of transplant tx recipients have normal lives and continue to have normal lives. This is an especially important message. There have been some horrible comments lately over Canadian provinces mulling presumed consent. One guy obviously against the premise said, "What do these transplant patients actually contribute to society?" The same as that guy, obviously! Normalcy and just going about our business...
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iolaire
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« Reply #2 on: May 15, 2019, 07:51:57 PM »

. That's further proof that the majority of transplant tx recipients have normal lives and continue to have normal lives. This is an especially important message. There have been some horrible comments lately over Canadian provinces mulling presumed consent. One guy obviously against the premise said, "What do these transplant patients actually contribute to society?" The same as that guy, obviously! Normalcy and just going about our business...
Yes so many of us are some small part of this world but we represent a huge part of the fairly un-notable people who are the building blocks of this wonderful world.
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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.
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