A New Reality With CF

Every now and then I get to feeling down. Sometimes, small, and simple things can bring me down. For example, not being able to go out to dinner with a friend because my cystic fibrosis (CF) symptoms have flared. Or maybe it is missing one of my niece’s or nephew’s school plays because I need to stay home and do a treatment. Other times, heavier things can bring me down and make me feel sad. For example, my history with CF.

These heavy feelings are very mixed. They range between gratitude to guilt, from frustration to fear, from joy to disappointment. For example, I know I am privileged and blessed to have the health I have now. My life was very different a few years ago before Trikafta was made available to me.

And then on the other hand, I am frustrated and disappointed that I can not do the things I used to do easily. For example, attending church is all but impossible for me now. Work has changed so much that it would be unrecognizable to me if I had seen the future when I graduated from graduate school. And life is good, but different from what I expected whenever I would be asked, “Where do you see yourself in 10 years?”

New conversations

There have been a lot of conversations about how new meds have changed what the future holds for CF patients. CF patients have made past decisions because of what we were told the future could look like for us. That information directly impacted decisions my generation made on whether to attend university, go to trade schools, travel, marry, etc.

The life expectancy for people born with CF in 2023 is much higher than when I was born in the 1980’s, which is great news. Prolonged quantity and quality of life is also amazing. But what do the people who are kind of in the middle of that do? People like me who, very nearly died from the disease, are healthier now, but not nearly as healthy as they once were.

Personal struggles

Each person who encounters these issues while living with CF will have something they struggle with most. For me, it is hard because my current reality doesn’t match what I was told would be my reality would be as an adult with CF. I had a very healthy childhood, adolescence, and young adulthood, but that changed right after I turned 30 years old.

My reality is that my CF has affected my lungs so much that I am unable to do what I once did. And I don’t know what to do with my new abilities are. They are different and adjusted for what my lungs can handle. And I am still confused after over three years from my first Trikafta dose. What does someone do when they expect to die or need a transplant, but a miracle changed the outcome? Where do we fit in and how do we process the inner dialogue of confusing questions and mixed emotions?

No easy answer

I wish there was an easy answer. Because if there was, I would share it with everyone I met. Facing those questions for me looks like seeing a therapist weekly. It means grieving what once was, acknowledging what could have been, and accepting what has happened. And it means accepting that there is a learning curve that I just don’t understand.

My doctor told me that I was part of the in-between generation when I was younger. I was born in a time when there were treatments to help with maintenance of CF. And there were great expectations of increasing the life expectancy for CF patients. But I was born before the modulator generation.

Not alone

I always had hope that medications like Trikafta, Orkambi, and Symdeko would improve the lives of CF patients. But I never thought about what that would mean for so many of the CF community who, like me, lost so much lung function before they became available. As more adult and middle-aged CF patients continue to think about what life looks like after Trikafta, it comforts me to know that I am not the only one having confusing thoughts with mixed emotions.

Life looks a lot different than it used to and it doesn’t look like how many of us thought it would, but with time I hope that all CF patients can be at peace with where they are now. Prolonging the quantity and quality of life comes with a lot of questions. And those questions can not be answered in just one day.