The text in quotations was written 25 years ago.

The text in italic – current response.

“One day, a friend of mine asked me if cystic fibrosis made me feel as if I were the walking dead. “

I’d say today, uh-uh – bullshit. Don’t ever ask me that question. It’s rude.

“Sometimes cystic fibrosis embodies a very dark connotation that is misunderstood quite frequently.”

All the time.

“Being the age that I am, at one time, was an illusion.”

Only because a wide swath of everyday people couldn’t see.

“A dream perhaps, but whatever it was seemed to be elusive.”

Living is a dream. It can be elusive until you wack your toe or smack your elbow.

“I feel that living with a life-threatening illness, I have a very difficult time trusting reality, because today may not become tonight.”

It isn’t an illness. It isn’t a disease. It’s a mutation, and disease processes can develop from the mutation. However, cystic fibrosis isn’t a disease or an illness.

I can trust the breath that I am taking and always hope that it leads to the next –

“I had always wanted to reach eighteen, to become an adult, and hesitantly look even further, perhaps middle age.”

Check

Check

Check

“To have the amazement of pulling grey hairs and seeing wrinkles under my eyes, while still breathing and standing, is parallel to finding the end of the yellow brick road. It seems intangible.”

I started sprouting gray hair in my early thirties. Many of my peers have never gotten that chance.

“Living with cystic fibrosis, the road is still being constructed brick-by-brick. Research is always ongoing, and new therapies and medicines are continuously evolving.”

As we speak.

“I have had to learn how to invent and construct my own pathway by trial-and-error, my own research, combined with a lot of hard work.”

I believe my newest finding is my compression legs.

December 2019, I initially started Trikafta and my lung function scores increased by 8-10% (I am combining two main data points), and my weight increased by 6-8 pounds over those first six months. We were well into 2020 and the COVID-19 pandemic by then, right?

I plateaued a bit.

2021 increased 2-4%

2022 increased 2-4%

2023 increased 2-4%

Jan 2024 sitting pretty good. I am moving further and further away from my lowest point, which was in August 2019. I had gained at least 20-22% from my lowest point.

Spring 2024 re-injured my knee. I started PT and began using compression legs. I exercised less.

June 2024 – giant leap.

My Forced Vital Capacity (FVC) jumped 9%.

My Forced Expiratory Volume in the first 10 seconds (FEV1) increased by 3% – that may not seem significant, but improving the FEV1 is particularly challenging.

June 2025 – FVC decreased by 3%, which is essentially the same. Your FVC, especially, can change 4-5% from the morning to evening. It is incredibly dependent on how you feel, your energy reserves, the weather, your sugar levels, weight, hydration, and other factors.

FEV1 increased by another 3%, which is again really challenging to achieve. You can try your best and push yourself to extremes, but the FEV1 may just teeter around the same number. All your efforts could seem insignificant.

I find FVC and FEV1 almost mystical, in another world beyond my total comprehension. Yet, these two numbers predict my lifespan more than any other, and are the firm markers if ever I need a lung transplant.

I haven’t done anything too different for these last couple of years other than my compression legs. It has become easier to exercise, so I can do more, press harder, and longer. But it doesn’t explain the leap between January 2024 and June 2024.

My Boston MD saw no correlation and doesn’t believe in it.

My Minnesota doc was quite interested in it. She believed that the compression legs had increased blood flow and circulation, and in fact, could have helped my lungs. She laughed, saying you are essentially doing an almost whole-body vest treatment. Yes! You get it. My Minnesota doctor is a curious person, constantly stepping out of the traditional box and asking what could be.

Since 2019, I have regained approximately 30% of my lung capacity.

I also realize that anything can happen at any time, and pneumonia could hijack me at any time.

“It’s a huge endeavor. I have had to muster every living energy cell to live and be dedicated to it. It is possible. It is always possible.”

It is possible.

It is always possible.