Reflecting on the Passage of Time

Last week led me to reflect on how things change with time. Looking back on the obstacles I have overcome and the stepping stones navigated help me to appreciate the present.

Last Wednesday I drove home from a checkup at Duke University in Durham, North Carolina. My lung function was stable. I have been on Trikafta for a while and have not needed IV antibiotics for six months. For the first time in a few years, I feel I can maintain this state without experiencing incremental decline each month.

On Rare Disease Day, I participated in a panel at the Food and Drug Administration (FDA). I discussed my experience with phage therapy and gave feedback on regulatory considerations that will increase access to individualized treatments. I’m proud of the connections made that led to me speaking at the FDA and that I have enough experience to give valuable feedback.

Ella at the FDA for a Rare Disease Day meeting. (Courtesy of Ella Balasa)

Last week, I also had a lunch date with a friend who had a lifesaving double-lung transplant about three months ago at Duke. Six months ago, she didn’t have the energy to do anything but mandatory pulmonary rehabilitation. Bacteria ravaged her lungs. But she glowed during our lunch date. Her excitement about starting her life anew in New York City made me so happy. The passage of time has brought new beginnings and opportunities for us both.

My excitement stems from the renewed prospect of independence and is a significant marker of health changes. A few months ago, I didn’t think I’d be able to travel alone until I received a lung transplant. Needing continuous support, I didn’t even think I could live alone. But here we are. My parents are leaving to live in Hungary for the next six months, and I’m confident I can keep up with my health by myself.

This time last year, my lung function was at 18 percent. I couldn’t shower without feeling short of breath. Today, my lung function is at 28 percent. I’ve had some of the highest moments of my life. Everything accomplished, and everything my future holds, are thanks to health improvements.

The passage of time also helps me forget many of the feelings in my past. I forget the details of my most difficult days, which can be a blessing. But without the recollection of hardship, I can sometimes fail to cherish the good when we experience it.

Less than a year ago, I often felt as if I was trying to breathe through a concrete block. I experienced extreme heaviness in my chest upon waking up and could only take meager breaths before my morning breathing treatments during a bacterial exacerbation. But I have almost forgotten the extremity of that feeling because of the time that has passed. It used to happen nearly every month — a constant reminder of the grimness of my health.

However, I can’t write a column without acknowledging that time can bring negative health changes.

Time can take. One of my acquaintances went through the transplant process at the same time I did and received new lungs last summer, but he died. He seemed healthy; I hadn’t thought he would be taken so soon. The odds seemed in his favor. But life is a roll of the dice, and the odds are even less in your favor after transplant. There is no way of knowing what you will draw.

So we have to keep pushing through. Let’s notice and revel in the positive changes that time brings. Let’s remember the details of our struggles and the fact that nothing is guaranteed. Let’s acknowledge the burden of a difficult point in our lives but try to find the silver lining.

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