3 ms·

Wow. Have you kept track of environmental factors? Like your diet in that time frame as well as the air quality etc.? It would be just awesome to compile that

Wow. Have you kept track of environmental factors? Like your diet in that time frame as well as the air quality etc.? It would be just awesome to compile that and see the correlations with other people's datasets. Perhaps, that might lead to better strategies with dealing with atypical cystic fibrosis before we can actually find a way to replicate this 100% of time. By the way, does the percentage of damage matter? How damaged were your lungs? Clearly, there has to be a threshold beyond which healing is nigh impossible, but has anyone ever tried to define it outside of ballparks?

Mz 16y ago
I didn't track things on paper in the way you suggest. I have tried to share my best understanding of the process here: http://healthgazelle.com/ http://healthgazelle.com/ I would like to learn a programming language and write a game (simulation) to try to more effectively teach the process to others. Of course the amount of damage matters. My 23 year old son has the same diagnosis I have but was never anywhere near as sick as I was. Where he is at provides clues to what may be possible for me. I don't know anyone else who was as sick as I was and came back the way I have, so I don't have answers to some of your questions. My lungs were not deemed to be very damaged. I don't have a percentage. I have been working on this for more than 9 years, but I had to figure it out as I went. Presumably, if I can find the right means to share the mental model, it should take less time for others to heal. Of course, the best hope is to prevent damage in the first place, as was done for my son. It takes a lot of resources to come back, though far less than conventional medicine currently puts into this population with a result of basically dying slower. I think it is great that some folks get a second chance at life by getting new lungs. But I think it is horrifying and immoral that improving lung transplants is a much higher priority for the medical community than keeping these people well in the first place and keeping the lungs they were born with healthy and functional.

Mz 16y ago

I didn't track things on paper in the way you suggest. I have tried to share my best understanding of the process here: http://healthgazelle.com/ http://healthgazelle.com/ I would like to learn a programming language and write a game (simulation) to try to more effectively teach the process to others. Of course the amount of damage matters. My 23 year old son has the same diagnosis I have but was never anywhere near as sick as I was. Where he is at provides clues to what may be possible for me. I don't know anyone else who was as sick as I was and came back the way I have, so I don't have answers to some of your questions. My lungs were not deemed to be very damaged. I don't have a percentage. I have been working on this for more than 9 years, but I had to figure it out as I went. Presumably, if I can find the right means to share the mental model, it should take less time for others to heal. Of course, the best hope is to prevent damage in the first place, as was done for my son. It takes a lot of resources to come back, though far less than conventional medicine currently puts into this population with a result of basically dying slower. I think it is great that some folks get a second chance at life by getting new lungs. But I think it is horrifying and immoral that improving lung transplants is a much higher priority for the medical community than keeping these people well in the first place and keeping the lungs they were born with healthy and functional.