Nightwriter
New member
I just would like to add a few more comments. There are two schools of thought when it comes to health in general. One is I'm going to live my life and I'm willing to take whatever consequences come. The other is I am going to take some inconvenient and less fun options, and try everything I can to NOT to contribute to my own demise. And without judgement, I realize both are personal choices.
I have total respect for everyone following what is right for them. So the following remarks are for the people who believe like I do or at least are open to believing that the progression of CF can be slowed immensely by changing what you do. I wish that my former doctors had taught me what I know now -- I would be able to do all the things that I can't do anymore. And I wouldn't have spent YEARS of my life on IV medicines and being sick every three months.
When someone sends a child out bundled up from head to toe in frigid weather, it is because they are trying to protect the child's body from the brutal elements. When someone suggests that that child come in and change wet gloves to protect them, when it is their LUNGS that need protection, this doesn't make sense to me.
The lungs are the ONLY organ in the body that doesn't have protection around it. Every other organ is protected by skin, bones, muscles, and hidden deep inside the body. Every time you breath in through your nose or open your mouth, the lungs are exposed. And it in fact can take only a few seconds to have an effect.
To say that CF is progressive and what is going to happen is going to happen is simply untrue. I can go through blogs and posts and show you that people's choices or inadvertant exposure changed the course of their disease that lead to a sad and tragic demise.
There are people who have written to me asking me for any advice knowing that because of my doctor, my CF changed course drastically (my former doctor did talk transplant to me). Their children went from relatively mild symptoms with over 115% FEV1 to 34% in a timespan of 1-5 years.
I know that I can end up back at the bottom. And within the 12 years that I have done better, I have had relapses that I can trace to distinct exposures. And if I don't take care of myself, my CF will once again continue it's march.
I have such deep respect and affection for the people on this site. I am particularly amazed by the parents who selflessly put every waking moment into the care of their precious children. Please understand that my urging people to live with simple protections comes out wanting to see every one of you or your kids thrive.
I have total respect for everyone following what is right for them. So the following remarks are for the people who believe like I do or at least are open to believing that the progression of CF can be slowed immensely by changing what you do. I wish that my former doctors had taught me what I know now -- I would be able to do all the things that I can't do anymore. And I wouldn't have spent YEARS of my life on IV medicines and being sick every three months.
When someone sends a child out bundled up from head to toe in frigid weather, it is because they are trying to protect the child's body from the brutal elements. When someone suggests that that child come in and change wet gloves to protect them, when it is their LUNGS that need protection, this doesn't make sense to me.
The lungs are the ONLY organ in the body that doesn't have protection around it. Every other organ is protected by skin, bones, muscles, and hidden deep inside the body. Every time you breath in through your nose or open your mouth, the lungs are exposed. And it in fact can take only a few seconds to have an effect.
To say that CF is progressive and what is going to happen is going to happen is simply untrue. I can go through blogs and posts and show you that people's choices or inadvertant exposure changed the course of their disease that lead to a sad and tragic demise.
There are people who have written to me asking me for any advice knowing that because of my doctor, my CF changed course drastically (my former doctor did talk transplant to me). Their children went from relatively mild symptoms with over 115% FEV1 to 34% in a timespan of 1-5 years.
I know that I can end up back at the bottom. And within the 12 years that I have done better, I have had relapses that I can trace to distinct exposures. And if I don't take care of myself, my CF will once again continue it's march.
I have such deep respect and affection for the people on this site. I am particularly amazed by the parents who selflessly put every waking moment into the care of their precious children. Please understand that my urging people to live with simple protections comes out wanting to see every one of you or your kids thrive.