I read, but it took me 1/2 hour before I could figure out how to respond!! Now that I learned that so difficult piece of technology, I will respond when I feel I have something valuable to say. My son is 32. His pfts are around 80% and his oxygen level is 100%. His is in a clinical trial now. His mutation is 1 delta 508 and 542x. He feels his secret is water soluble oregano oil which he
mixes with saline in his nebulizer.
It is not proven nor suggested by his physician. My whole page is dedicated to spreading awareness, and hoping to actually see the purple rose as much as the pink ribbon! Why that does not happen is beyond me. My son also uses the vest. I encourage him to enjoy his life, be happy, follow his dreams...I have been there for him since birth. He used to cough up blood. I researched and recommended hyper-tonic saline to his doctor. Since he has been on that we have not had an incident. I realize things could change any day. There is no bubble to put around him to protect him from contracting any bacteria. I respond on facebook to people a lot. What do you say to a parent who loses their child, when that is the very fear you live with every breathing moment of your life? There are no words that touch that pain. Sorries, and prayers. Vertex is not the only pharmaceutical co. out there working on this. Call the disease control center in Bethesda. Research on line. UK has many ideas, as does Australia, Israel, Norway, etc. Do not limit yourselves. If you are not happy with your dr. find a new one. I am fortunate to be near Boston where I love my son's Doctors. Communication is very important. Growing up is tough enough, but going to the nurse for your enzymes, brings about questions, and I recall many times the nurse was not there, so my son went without. Talk to your principal. Get involved in every aspect of your kids' life. They grow to resent you as they reach their teens, but so what. Down deep they know you love them. Love to you all. just a mom. (L)[every dollar donated is one more breath)
