It has been 40 days since the words “Trikafta has been FDA approved.” This is a drug I’ve waited approximately 46 years and 2 months for. This drug is supposed to improve the way my chlorides come to the surface and therefore correct the salt and water content in my body specifically in my lungs. This is the first CFTR modulator that I have been able to take due to my genotype (Delta F508 and W1282X).
I think all the posts on Instagram and Facebook had me very impatient to start this drug. After a month of working with the insurance, my medical team, Vertex GPS and the Compass program at the CF Foundation, the box delivered while ironically enough I was in Los Angeles raising awareness. Sunday morning I began the adventure at my house with my wife, my biggest advocate and a warrior herself, standing by my side.
Day one the only thing I experienced was a bad stomach ache for several hours besides of course my trepidation and excitement. It’s difficult taking a drug and having person after person asking if you feel a difference yet. I felt like if I didn’t feel a difference that I was letting them down or I was doing something wrong. The stomach ache finally subsided but I didn’t see any other symptoms. Day two, I coughed a little bit at night but again I didn’t see much. Day three and day four is when the bad coughing really took place. Each lasted around an hour or so. One night was so bad that I stayed in my basement all night sitting up on the couch. I didn’t have headaches or a huge purge like everyone else but it definitely felt different. When I coughed, it was almost like throwing up. I knew there was more coming and I had to keep trying to get it up. Also, I noticed that the more I coughed, the wetter the coughs became.
Days five and six featured chills and some more coughing at night but still, there hasn’t been a “purge.” Here is what I’ve noticed though. Instead of coughing up dark yellow and green sputum like I normally do when I’m not on antibiotics, the sputum is either light yellow or clear which is great. I do feel like I can breathe a bit deeper. I’m not clearing my throat a lot when I run on the treadmill and I’m coughing a lot less. I also don’t have the coughing spasms I often have when I complete my run. Now if anything it’s a quick small cough with sputum that looks pretty normal. I haven’t felt the increase of energy that many people talk about but maybe that’s because my lung function wasn’t really low to begin with. Worst case I can always blame the kids for tiring me out.
All I know is the changes have been subtle but subtle is better than nonexistent. I’m so happy to hear that others are seeing differences too. Everyone’s symptoms are different and the results are all across the board. I just hope that we find a drug for the other 10% of the CF population who deserves it just as much. I’m talking about post-transplant survivors, children under 12, people with different genotypes and those who can’t get access to drugs in their countries. And we all still need a cure! We have a long way to go…but we definitely are headed in the right direction.
Live your dreams and love your life.
Best Wishes,
Andy
Just picked up the new med for my Son last night. I hope it works. He is at 21% Fev1. Thank you for all your uplifting post. We try to stay as positive.
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