What it Feels Like to Be in the Transitional Generation
Last updated: May 2023
A recent article in the New York Times Opinion written by Dr. Daniela J. Lamas, a pulmonologist in Boston, detailed the story of momentous change occurring in the cystic fibrosis (CF) community since the release of Trikafta in 2019. “What It’s Like to Learn You’re Going to Live Longer Than You Expected” explained the various complicated emotions and realities of what it is like to believe you would face an early death through the eyes of Molly Pam, an adult with CF.1
Big decisions such pursuing education and career choices to planning for a family have all been influenced by her belief of what the future holds. Would you get braces or wear sunscreen if you believed you would die by your 20s or 30s? Sadly, some people with CF said no as remarked in the article. These conversations were the very difficult inner dialogues people with CF had many times over before the approval of Trikafta.
In the article, Lamas referred to the people with CF in their 30s, 40s, and 50s as the “transitional generation”.1 This generation has experienced the very devastating hardships of CF, while also experiencing the new found health and freedom of Trikafta. A population that continues to live in limbo between both worlds–dealing with the realities of damage from daily CF life while relishing the repair of Highly Effective Modulator Therapy (HEMT).
I identify so much with this generational title because that’s exactly how I feel, floating somewhere in the middle.
Better but not cured
Like many, Trikafta slowed my disease progression at a delicate breaking point in my health. It lessened my IV use and allowed me to be healthy enough to carry another child, a dream I thought was long forgotten. Right now, I’m not drowning in mucus upon waking up in the morning like I used to. My vitamin levels are normal with supplements, something I never experienced before Trikafta. Plus, I don’t pee my pants from coughing every day, which if I am being honest is really, really nice. More energy, less coughing, less hemoptysis, and a more hopeful future are my personal gifts granted from Trikafta.
However, I am still too sick and busy managing CF to work a full time job. I still require daily treatments for airway clearance, manage CFRD (CF-related diabetes), and take the same number of pills as before. As my lungs age, permanent structural damage has caused recurrent pneumonia and atelectasis. Unlike others, I have decided to keep my port and use it for IV antibiotics and still struggle with my weight.
In truth, I feel I still have CF, but thankfully, I am not white knuckling the grasp on my life everyday. Now, I can breathe fully and relax a bit–metaphorically and physically, of course. In short, I am in transition. A wanderer between two worlds. Moreover, I know that if I had to, I could exist in this "place" be thankful for it wholeheartedly, but I still have CF.
If you give a CFer…
Although being in the transitional generation can be a complicated and mixed up process, I know I am undoubtedly lucky. My heart breaks for the people with CF and their families who passed before Trikafta. I often think how many of them were so close to gaining access to the drug and how different their lives might have been if they had the chance to take it.
Instead, I wish it was similar to that favorite children’s book for them, “If You Give a Mouse a Cookie”. If you give a CFer an effective treatment, they will hold on until the next effective treatment. If you give a CFer that treatment, they will thank you and ask for another treatment. In the end, that’s my hope for everyone with CF. Keep hanging on-- inch by inch--as we crawl our way through the spectrum of treatments and make it to our final destination: a cure for all. We transition our way out of this holding place and find complete freedom after all. As we all deserve.
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