Just a month ago I felt like I was watching a movie of my life instead of living my life. I would constantly stare at my phone wondering if/when I'm going to get new lungs. Flipping back and forth from excited to nervous. As soon as I found out about Trikafta I constantly asked my cf team when I might be able to get it. They kept saying unfortunately my genotype (ddf508) couldn't start the compassionate use program unless I was ALREADY on the list. I was going through transplant evaluation feeling frustrated that it seemed like a backward process. I found myself getting jealous of the other people who had already gotten to try it, sad for the people who might not/didn't get to, and then mad at myself for being jealous. Suddenly one day my brother sent me a text saying Trikafta was FDA-approved. I was confused and didn't believe the news, since my cf team had just told me it would still be a while before I could start it. Apparently, they didn't know about the much earlier-than-anticipated release and were surprised by the news too.
After a few weeks, I started the newly FDA-approved medicine (3 pills a day) and although I kept my expectations low I found it extremely hard not to compare my experience to everyone else's experiences. I had been reading of other people's results, so after my first dose I tried to convince myself that maybe I wasn't feeling differently from Trikafta or it was "all in my head".
Four hours after my first dose I was sitting in a waiting room with my toddler and boyfriend. I started coughing and getting stuff out of my lungs when I didn't feel like I needed to cough. Then, I kept coughing. It wasn't extreme coughing attacks and it was never constant coughing. I experienced an awful taste and some pretty uncomfortable sharp rib and chest pains, as well as rubbing/wheezing coming from my right lower lung. I struggled to listen to the Cardiac surgeon and understand what he was talking about because the pain and surrealness of it all made it hard to concentrate. I couldn't believe that this new drug, basically a last resort before transplant might be working...
A few days later my excitement was short-lived. I felt short of breath, I had more body aches. I could take slightly deeper and clearer breaths which was awesome, but I was frustrated that I didn't have more energy. I didn't feel like my lung function was dramatically increased. I didn't have this insane "purge" that everyone was talking about. I struggled more when I started having arm and leg weakness that wouldn't resolve and still hasn't resolved.
Since Trikafta, I have been iv and oral-antibiotic-free for the first time in years and I haven't had a fever in 20 days. I can't remember the last time I haven't had a fever in 20 days. My PFTs went from pre-Trikafta 36% to 46% in a little less than a month, so I was able to be listed as inactive on the transplant list due to the high increase in my PFTs. I have intense insomnia and my energy levels have been all over the place from non-existent to over-abundance. I have more shortness of breath but increased quality of life due to not having to be on antibiotics or having fevers and tachycardia. I still have rib pain, which I have chronically, and some days it is more intense than it once was. I still cough but now I can cuddle with my boyfriend sometimes and feel like I could even sleep lying down (I've slept on a couch recliner for about a year now). Things are changing, maybe not in the way I expected, but I'll take what I can get.
I'm really grateful that people take the time to research and come up with new ideas for Cystic Fibrosis. I truly hope one day we can all have access to great medicine at a price that won't break banks. I'm glad that Vertex has a program to offer support to people with cf and that my team works so hard to try to keep everyone happy and healthy. I'm really glad I haven't lost nearly as many friends this year as in years past and that I still have my family.
There's a lot to be thankful for this Thanksgiving.
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