I'm not sure if you remember - but when I was 28 years old, my baseline FEV1 was 85%. After following Dr. Bishop's protocol (against my doctor's wishes) for my body weight for a year - my FEV1 had gone up 12% to 97%. My doctors were amazed. I had no IV therapy that year (my first IV was at 30 due to PA in my culture), so I know it was just the addition of GSH that increased my numbers. I've been able to maintain these numbers years later but I do need annual IV therapy to get there.

So, 5 years later, I've been introduced to Pulmozyme, Hypertonic Saline, TOBI and Singulair. Now I need to do more to stay healthy (more meds) but I am not complaining.

I tend to balance out what my doctors tell me based on what my body is doing (sometimes I'm wrong and get yelled at - ha!) but for the most part what I do keeps my numbers up. For instance - I was planning to continue TOBI on/off cycle for 2 years from my last PA culture (in order to make sure it's gone). However, after my last IV therapy, I have very slight ringing in the ears. I stopped my own TOBI but told the doc the next time we met. She agreed that was a good move and is sending me to get a hearing test this week. If it's not from toxicity, then I will continue.

My body's symptoms are not consistent so I adjust my meds accordingly. I'm not sure "when" I learned to do this but I can tell.

I am appreciative of all the new research and treatments for CF - both natural and chemical. I realize this is what keeps me alive.

I definitely think it is harder to be the parent of a CF individual. You parents that find what works for your children are really the amazing ones! I'm sure your kids will thank you when they're older if they haven't already!