My Nonprofit Reviews

Ever sense I was in my 20's I was misdiagnosed with asthma. I had 2 years in a row I became so breathless I would collapse if I walked a few feet. I was constantly coughing with a cough that sounded like a seal bark. I was placed in a medically induced coma for a few days short of a month so they could allow me to pass in peace when I was 47. When they finally "pulled the plug" i came out of the coma. I demanded a bronchoscopy. That is when they found my airways were collapsing. I had tracheobroncomalacia (TBM). They gave me 6 months to live. No one knew how to treat this with an adult. Most even after the diagnosis still did not believe it possible. I found this group on facebook and it changed my life. The community is so supportive of each other and never stop sharing information that helps all to learn how to survive. Jennifer Champy is the founder and because of her and this group my life was changed and spared. Through her and this group I learned to live and function with TBM. I also learned about a treatment at Beth Israel Deaconiss Medical Center (BIDMC). My trechea had reached a point that on exhale the full length except at the very top would collapse 95-100 percent. My life was at a point I was couch bound and on a bipap most of the day. I was on full disability. Because of the knowledge about BIDMC I went and they prformed a tracheobronchoplasty by way of an open thoracadomy throuh my back. It changed my life. No, I am not healed. Yes I am still on disability but I am able to breathe. I can do things I couldn't do for the preceeding 2 years. I have a life again. It is still limited greatly but it is a life. And it is because of this group that Jennifer started and continues to build that I have this life. I am a believer in GOD and I believe GOD put Jennifer on this earth for this purpose. So that this group could be brought together giving us all a life again and hope. I am now in my 60's.

I was diagnosed with TBM after being placed in a nearly month long medically induced coma due to the fact I was misdiagnosed for years and they were simply waiting for me to die. Once they knew what I had, noone could treat me because of lack of knowelge in the field. I found this site and it changed my life. I was able to talk to others with the same disease. We help each other to learn what to do. It led me to Beth Israel Deaconess Medical College where the leaders in the knowelege of this disease performed a very complicated surgery that has improved me greatly. I have gone from terrable struggle to a life with much more ability. If I had not found this group, if I was still alive, I would be be on oxygen and bedfast right now.