Making a Splash in Cystic Fibrosis Research!

My one month update

I am 42 years old and have DF508 / N1303K. I was diagnosed at 3 months of age and did not have lung infection or complications until 18 years of age. I have always been pancreatic insufficient.

The last 18 months were the most challenging lung-wise to date for me. I cultured a new bug called Pandora Apista which I think contributed to a rough year. It included my first bronchoscopy to vacuum out my lungs, 3 rounds of IV medications and numerous oral antibiotics. I’ve never needed that much medication in my life. I finished a round of IVs in late March 2017 which targeted the Pandora Apista and I believe it worked well. 2 weeks post IVs, I agreed to have my PICC line pulled as I was confident the medication worked. I started Indrepta the very next day. I hardly had a cough or mucus because the IV treatment seemed like the right cocktail. I thought it was the perfect time to start Indrepta B. My plan was to increase 1 pill per week.

Day10 I awoke with a really bad head cold where I needed ibuprofen and another hour in bed before I could lift my head off the pillow. I have fought through head colds myself in the past, but never once when it travelled to my chest. My classic transition from head to chest included the cough where it is impossible to speak a sentence. That’s when I normally need oral antibiotics. The cold progressed to my chest without that problem. I lost my voice, had a ton of mucus and had to do 2 extra vest/neb sessions per day to keep up with clearance. That is 3 total lung therapy sessions per day plus an hour of exercise. Since my doctor is not aware that I’m taking Indrepta, I kept a close eye on my FEV1 with my home spirometer, SpiroPd. During the course of the chest cold, it never dipped low enough for me to call for oral antibiotic. There were days I second guessed myself, but I wasn’t in pain and the numbers were stable. It took 2.5 weeks for my full voice to return and I have minimal sputum production which is curiously still lighter than normal for me.

I am up to 5 pills per day and plan to add the new grape TauriNAC when available.

I had no expectations going into this but would have never guessed I would have such immediate results!

I consider myself to be a positive person. I have a 4 year old daughter. Realistically, being an older mom AND having CF, I didn’t expect to be around to become a grandmother. Now, I’m not rushing her…. but, for the first time ever, I seriously think I may live to see a grandchild. I think this is what we’ve all been waiting for since 1989 when the CFTR was discovered.

Thanks doesn’t cover it, but that’s all I’ve got. 😁

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