New Normal Day 8 https://ift.tt/2Uoobu3
That feeling when your magic meds don’t matter anymore because you can’t get refills due to pandemic. #cysticfibrosis #trikafta #covid19 https://ift.tt/2TevdSZ
Happy Valentine’s Day. You know what I love?! I love Trikafta. I just completed month 2 and I am feeling so good. All of the physical updates from last month stand, I don’t cough and I breathe easier.
However, mental wellness updates:
I worry a lot less. I have a trip to London coming up in June and usually I would be planning the trip and at the same time worrying and hoping that I don’t get sick and have to cancel the trip. I am not worried about this and a lot of the other day to day little worries that I have been increasingly used to over the past decade.
The future is wide open! For the first time I don’t have to make career decisions with a “well, will I be healthy enough to complete that program/take on a new role/etc”. It is both exciting and overwhelming to look ahead and make some big choices for life. Im trying not to rush into anything to big, because now–for the first time I don’t have to rush to make dreams happen.
I have more time to do things I enjoy because I have more energy.
So life is exciting! Again, this wouldn’t be possible without all the contributions to the Cystic Fibrosis Foundation. You can be a part of life changing research, that brings drugs like Trikafta to more CF people, and more research around antibiotic resistance with affects us all.
The CF Foundation doesn’t just provide funds for CF research they do a whole lot of other things for the CF Community:
CF Compass: a service has helps people with CF manage insurance, financial, and legal issues that arise because of CF.
Impact Grants: grants to small CF related non-profits who provide services to people with CF. My fav recent grant recipients are: CFYogi, Fall Risk Musical, sINgSPRIRE Virtual Choir, and of course Attain Health who has been helping me get my body moving for the past few months.
Virtual Events: Because people with CF can’t be together in real space the foundation puts on multiple virtual conferences each year to help the community connect. I have been fortunate to have worked on the planning committees for these events the past few years.
You can donate to my Great Strides campaigns via the link in my bio. Thanks! @cffmetrodc https://ift.tt/2OVR7rB
Trikafta Month 1
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 “the purge” 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 “improvements” 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 don’t know FEV1 percentage, the home spirometry device I says have gained about half a liter of lung space I didn’t 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 didn’t 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 “CF Perk” 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 “brighter” further into the day.
8. And probably the most miraculous of all: I had a cold just after Christmas and it didn’t go into my chest and didn’t 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 can’t 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.
Today I start Trikafta, a medicine that corrects the cause of CF at the cellular level. This is NOT a cure, but it is a miracle drug that should allow me to continue working and traveling for many years to come. I have been on modulators the past 4 years that have kept me stable, at around 50% FEV1, but this new modulator should help be REGAIN lung function, something previously unthinkable. I’ll take my first dose tomorrow and I can’t express how excited I am for the journey ahead. I am hoping for more energy and deeper breaths.
Unfortunately this drug only works for about 90% of the CF population. 10% of people with CF have genetic mutations that modulators just don’t work for. For these people, and those who have already experienced lung transplants we are still working. And of course we are still working for a CURE for ALL people with CF, not just treatments like these.
A big part of the reason I am here now is the research that has gone into CF, much of it paid for by the Cystic Fibrosis Foundation. My family has been involved in raising money for CF since I was little. I grew up doing stair climbs and walks to raise money. So this year, for the first year in about 10, I am forming a Great Strides team.
What I am asking is for your support as I walk Great Strides on May 31st on the National Mall for my 39th birthday party. Want to come to my party? Join my team! Can’t be there? Please donate. Today I am asking for something to commemorate year 39: be it $3.90, $39, or $390.
Donation link in profile.
Also for my friends in Canada: Please contact your government officials. Canada has yet to grant access to modulators (Orkambi and Symdeko are two I have been on for the past 5 years). And to my friends in the UK NHS just passed access to modulators Orkambi and Symdeko, but the deal didn’t include Trikafta so we have a fight there too. https://ift.tt/2Q8FXj5
Best weekend! #fieldingnotes #fieldingtrip https://ift.tt/2O9uOgM
Thank you @repdonbeyer for having me to your office today to share my #cysticfibrosis story and for the work you have done to support the community.
You too can contact your congressman and ask them to support access to robust health care and fully fund the NIH. #CFAdvocacy @cf_foundation @cffmetrodc https://ift.tt/2ZliBOJ
Saturday Night at Home with Food and Friends #fieldingnotes https://ift.tt/2XPrNcs
#FrizzBoo hopes everyone had a great 4th! https://ift.tt/2XtwERd
Last day of this #FIELDingTRIP2019: Hiked around the tent rocks, had my last my last dose of red chili and enchiladas, visited the air Base I lived on when I was 2-4, and sipped a Sonic slush pool side. Great trip with mom…back to DC and work (summer school) tomorrow. http://bit.ly/2XkbrIB