Today is one of the tougher grief milestones because it marks two years since Ramón's cardiac arrest. My hope for today is that I can live mostly in a place of gratitude — thankful for the crisp morning air, the vibrant colors of spring, and the piece of extra sharp white cheddar cheese I just had for breakfast. To help further my gratitude mission, check this out:
Here's the text from my CF fundraising page:
Typically, when I sit down to write this page each year, I struggle with what to say. I try to think of a new way to convey that (1) yes, I still have cystic fibrosis; (2) yes, respiratory therapy still requires hours of my time each day; and (3) yes, I’m still asking for your support.
However, this year’s messaging is going to be slightly different, so don’t stop reading here! Over the past nine months and counting, my life has changed tremendously, and I have you all to thank for that.
The Cystic Fibrosis Foundation has made incredible advancements over the past decade, most notably the development and FDA approval of Trikafta in 2019. Trikafta treats the underlying cause of CF for 90% of the CF population by correcting issues with the cystic fibrosis transmembrane conductance regulator (CFTR) protein. Though Trikafta is not a cure, it does have the potential, when taken daily, to make the majority of the CF population feel less CF-y (aka able to breathe).
I AM NOW ON TRIKAFTA!
I AM NOW MUCH LESS CF-y!
I’d attempted to take Trikafta in the past, but it presented some concerning side effects, including elevated liver enzymes. However, after incredible help, patience, and coordination with my pulmonologist, we figured out a way to make Trikafta work for me. HOORAY! I’ve only endured about 50 lab visits and 100 needle sticks (twice per attempt!) to get here, but I’m here — I’m on the miracle drug!
When I say my life looks different, I mean that I am finally experiencing what it might look like to lead a day in the life of the average person my age. When I registered for the walk, my fundraising page showed me what I’d written in 2021. Last year I wrote about being wiped out, finishing IV antibiotics, and my recent (and fifth) sinus surgery. However, this was the line that stood out the most: I struggle much more than usual with daily tasks, often stopping mid-basic-household-chore to rest.
You should see me now, folks! I can fold laundry like nobody’s business, and I can aggressively vacuum — all without coughing or feeling the all-too-common exhaustion I used to endure. I can do burpees and tuck jumps and carry dogs inside who refuse to listen to my desperate pleas. I feel like a superhero! (Note: I occasionally remind myself this is what some of you have been doing all along. Congrats to you.)
For me, the biggest change has been my ability to be more present — to do what strikes my fancy. I grew so accustomed to strategizing about how exactly to allot my energy each day. I’d previously adopted a rule where I didn’t leave the house on back-to-back days, and I could schedule a maximum of two activities each week (e.g., coffee/lunch with a friend and one appointment). Now I wake up with gratitude each morning, ready to take advantage of what the day may bring. That thought alone — not knowing what the day may bring — used to cause me anxiety, but now it’s a source of excitement.
So, if life’s going so well, does the CF Foundation still need money? I’m glad I asked myself that question as a means of answering it to raise additional points.
The answer is yes. The CF Foundation still has plenty of work to do. Though Trikafta is great, it’s not for everyone, as illustrated by my story. Plenty of people who are technically eligible can’t take it due to side effects. Additionally, at least 10% of the population can’t take the medication based purely on genetics. Physiologically it doesn’t work on their genetic mutations.
There is also no data on the long-term effects of taking Trikafta. Because the drug hasn’t been commercially available for very long, only a few years of data exist. It’s still very early, so only time will show what long-term usage looks like. Additionally, though Trikafta has shown incredible benefit lung-wise, CFers still deal with digestive abnormalities, CF-related diabetes, and increased likelihood of certain other comorbidities.
And, if I’ve brought things down a notch, from Cloud 9 to Cloud 8, just wait. We’re going to Cloud 7.
Yes, we’re witnessing amazing progress. There’s no denying that. But I can’t put the kibosh on my fundraising now, knowing that beautiful lives that have been lost to CF and that other people are still waiting for their drug. We’re in this together, and the ultimate goal is a cure.
No matter how fast I can unload the dishwasher, I know that things could change tomorrow. So, I embrace this day and continue to ask for your support.