There has been a recent development in my health. As well as many others with my same cf gene. With the addition of a medication called Trikafta, It is a triple combination precision medicine of three separate drugs (ivacaftor, tezacaftor and elexacaftor). I have been taking it on and off but also having allergic reactions to. So for some time I’ve been unable to tolerate it.
I have had very serious complications from cystic fibrosis in the last 13 years even with my new lungs. Horrible sinus infections requiring surgery and life altering GI symptoms. Causing me the inability to work and at times live a quality life. And many kidney stones resulting in surgeries. Among other setbacks and additional surgeries. Life post lung transplant hasn’t been all health setback free but yes it has been extremely incredible.
Trkafta is a cf modulator that corrects the chloride channel that causes cf and helps people with the df508 gene stay healthier and not lose so much lung function, gain weight, and live healthier lives longer. Also correcting the sinus and GI issues in some people. This medication does not work for everyone with cf, and is not a cure.
I happen to have two of the same copies of the df508 cf gene. Recently over the past month I have been able to take trikafta a few times in 2 and 3 week increments. For me it’s been nothing short of a miracle. Completely drying up my sinuses and battling the infection and nearly correcting all of my GI symptoms.
It’s bittersweet that my lungs didn’t make it for this miracle. Which are now at 50% of predicted function. But I’m so glad I did. It’s also really tough knowing that my brother didn’t make it for this treatment. I do believe he also shared at least one copy of the gene necessary to take this medication.
I’m grateful knowing that in the pipeline there are things coming out to help all the people suffering from this devastating disease. Because maybe someday now there will be a cure. Who knows maybe I will live to see it. But for now I can just hope to be able to tolerate this new drug, and be healthier and more functional than I’ve ever been in my lifetime. With the exceptionally high 50% (for me) lung function as well.
I can’t help but always be so incredibly grateful for the people working tirelessly for these miracles to be available, the doctors and researchers and everyone else committing their own time and lives to this fight. Even with new lungs I still have cf. But I’m also not as sick as I used to be. So for that I am forever grateful.
If gifted with the ability to tolerate this new drug I would have such amazing opportunities for living a much different life. But all in all I’m just excited that it’s available and that people with my gene type have the opportunity to try it since I’ve seen how well it works for me!
So that’s my health update as I rarely share them widely. But my lungs have gone down to 50% while other areas of my life could improve. As always, it’s bittersweet. But super grateful I’m still alive and kicking aside from it all. Also when I finally thought it to be safe for me to leave the house I ended up with covid, twice….
And for those of you who don’t know, my cochlear implant I received post transplant works better than I could’ve ever imagined, I can understand sound, communicate, and music sounds better than I even remember after not being able to hear for almost 10 years.
It’s a real good life.