I just took the last dose from my first month of Trikafta. To say this month has been amazing would be an understatement. I was fortunate to experience βthe purgeβ that some people with Trikafta have experienced. About 5 hours after I took my first dose I started coughing up all the mucus in my lungs. This went on for about 3 days, and then stopped.
Here is a list of the βimprovementsβ to my life this past month.
1. No coughing. The silence is weird, still getting used to this one, and also seeing my coughing abs disappear. Whomp Whomp. BUT YES NO COUGHING!
2. More lung capacity. While I donβt know FEV1 percentage, the home spirometry device I says have gained about half a liter of lung space I didnβt have before. Being able to gain anything back is amazing!
3. I have been able to exercise, even run. Right before I started Trikafta I joined a physical training program called Attain Health Foundation for people with CF. This group has really helped me start to achieve physical goals that I didnβt know I had. (See attached photo of workout me, lol).
4. My heart rate has lowered. I pulled my fitbit out of a drawer Jan 1, and since then it has gone from resting 73 bpm to 68 bpm. Thats 8,000 beat difference a day. This is probably a combo of Trikafta making my lungs not work as hard and working out. Yay!
5. I have gained weight. This is honestly a hard one, as I have had a healthy weight. Losing the βCF Perkβ of being able to eat whatever/however much I want is a shift. A true lifestyle switch. One totally worth making though, its just going to take more than a month to get used too.
6. I sleep better (and more quietly according to Dave).
7. I have more energy and my mind feels βbrighterβ further into the day.
8. And probably the most miraculous of all: I had a cold just after Christmas and it didnβt go into my chest and didnβt linger for weeks. In fact during the cold I went and ran at an indoor track. 3 days, head cold only, and then gone. I am jealous of what you normies have been experiencing for years!
9. I feel less worry about making plans I would have to cancel "What if I get sick then..." This is the most exciting part. Getting to really plan a future.
So with this update I again ask you to donate to or join my Great Strides Team (Fieldings Force: Kristy Fielding Polacek, Keiranne Barnicle O'Donnell, and Krysia Gabenski are already on board). Thanks to your generous donations I am almost half-way to my $3,900 goal to celebrate my 39th birthday the week of the walk.
If you could donate $10 dollars for the 10% of people with CF that canβt take this medicine that would be so appreicated. We still need solutions for them, and research in other areas such as lung transplant, antibiotics for superbugs, and inflammation.
http://fightcf.cff.org/goto/katief
Also remember we are still fighting for everyone eligible for these meds outside the US to be able to get access to them quickly. If you have ties to Canada, the UK, and other places please advocate for people with CF there to your legislators.
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