I have a form of cystic fibrosis. It is a genetic disorder and classified as a dread disease. It accounts for about a third of all adult lung transplants and about half of all pediatric lung transplants in the US.
I used to participate in CF email lists and forums. I've heard what transplant is really like.
In spite of the glowing testimony here, once you get listed for transplant, you basically sit around hoping someone dies tragically young in the prime of their life who will be a match for you. The surgery is hugely invasive and takes many months of recovery. You will take anti-rejection meds the rest of your life. Etc.
Additionally, most transplant candidates have conditions that involve slow deterioration over many years. It isn't like it typically happens suddenly and without warning.
I was diagnosed late in life, a bit over 17 years ago. I had a hole in my left lung. That hole has closed up and I've spent more than 17 years getting myself healthier while the entire world heaps abuse on me.
I have been thrown off of multiple email lists and forums. I'm routinely called a liar and a lunatic. When I complain to mods about the mistreatment, it's common for me to be told I'm the problem though I'm not breaking any forum rules.
I spent nearly six years homeless. I got damn little support while sleeping in a tent and trying to sort my problems while getting well while much of the world shit all over me.
This isn't really a can of worms I wanted to open. I don't see why it is a big damn deal to quietly suggest that maybe we could research other options too. I'm not suggesting some Repo Man scenario here.
I have a form of cystic fibrosis. It is a genetic disorder and classified as a dread disease. It accounts for about a third of all adult lung transplants and about half of all pediatric lung transplants in the US.
I used to participate in CF email lists and forums. I've heard what transplant is really like.
In spite of the glowing testimony here, once you get listed for transplant, you basically sit around hoping someone dies tragically young in the prime of their life who will be a match for you. The surgery is hugely invasive and takes many months of recovery. You will take anti-rejection meds the rest of your life. Etc.
Additionally, most transplant candidates have conditions that involve slow deterioration over many years. It isn't like it typically happens suddenly and without warning.
I was diagnosed late in life, a bit over 17 years ago. I had a hole in my left lung. That hole has closed up and I've spent more than 17 years getting myself healthier while the entire world heaps abuse on me.
I have been thrown off of multiple email lists and forums. I'm routinely called a liar and a lunatic. When I complain to mods about the mistreatment, it's common for me to be told I'm the problem though I'm not breaking any forum rules.
I spent nearly six years homeless. I got damn little support while sleeping in a tent and trying to sort my problems while getting well while much of the world shit all over me.
This isn't really a can of worms I wanted to open. I don't see why it is a big damn deal to quietly suggest that maybe we could research other options too. I'm not suggesting some Repo Man scenario here.