Today, Not Someday

September is Pulmonary Fibrosis Awareness Month. This year's theme: "Today, not someday."

Tomorrow the Pulmonary Clinical Trials Workshop presents a webinar on recruiting trials. Ifetroban. Nerandomilast. Inhaled treprostinil. UCSF running multi-cause fibrosis studies. United Therapeutics showing positive ERS 2026 data.

I'll watch it. Take notes. Track which trials are recruiting and what the inclusion criteria look like.

Knowing I won't qualify for any of them.

The Timeline That Doesn't Fit

Terminal pulmonary fibrosis. Diagnosed July 2024. Also bronchiectasis, COPD, pulmonary sarcoidosis, hEDS. Autistic, ADHD. 52 years old.

That's not a trial subject. That's a comorbidity pile that makes the data unusable.

Clinical trials need clean populations. One disease, minimal confounding factors, predictable progression. You can't measure a fibrosis drug's effect when the patient also has COPD flares, EDS complications, and sarcoidosis inflammation all moving independently.

I understand why I'm excluded. It's not personal. It's math.

But I still track the trials. Because the timeline of research and the timeline of terminal illness don't line up, and that gap is where you live.

Trial enrolls 2026. Results 2028. FDA review 2029. Approval — if it's promising and gets accelerated — maybe 2030.

I was diagnosed in 2024 with terminal pulmonary fibrosis. The timeline doesn't add up.

What You Track Anyway

So why watch a webinar about trials you won't join?

Because ifetroban targets multiple fibrosis causes. That multi-pathway approach might work off-label when the standard drugs fail.

Because inhaled treprostinil delivered directly to the lungs could mean tolerating a drug you couldn't handle systemically.

Because nerandomilast getting spotlight time at a major respiratory conference means someone thinks it's worth the investment, and that changes what your pulmonologist might consider prescribing.

Because the person diagnosed six months after you might be younger, healthier, and fit every inclusion criterion. The work that won't save you might save them.

That's the gap you live in. Research that matters intensely and personally, knowing it's not moving fast enough to help you.

Living in the Gap

My PCP said, "Go live your life as much as you can, for as long as you can."

That's the same message as "Today, not someday." Different words, same truth.

You don't get someday with a terminal diagnosis. You get today. And maybe tomorrow. String enough of those together and you get weeks, months, years if you're lucky.

So today I write. Today I track clinical trials I won't enroll in. Today I read about SGLT2 inhibitors being repurposed for sarcoidosis mortality and CHIT1 inhibition in Phase II trials.

Not because any of it will change my outcome. Because it might change someone else's. And because staying engaged with the research — even when it's too slow, even when the timeline doesn't fit — is how I remain a person with a disease instead of becoming just the disease.

It's a small distinction. Some days it doesn't feel like it matters.

But it's the distinction I have. So I take it.

What Helps Now

The American Lung Association is running a free program on living with pulmonary fibrosis. Learning to pace yourself. Recognizing exacerbation signs. Understanding when to push and when to stop.

That's not a cure. It's not even a treatment. It's maintenance work.

But maintenance work is what keeps you functional between the diagnosis and whatever comes next. It's learning your baseline so you know when you're slipping. It's stopping before you crash instead of pushing through until urgent care is the only option.

I learned that one the hard way. Respiratory distress, oxygen saturation in the low 80s, being told "you can't ignore this anymore."

So I don't. I track it. I pace. I stop when I need to.

That's today. Tomorrow I'll watch a webinar about treatments I won't live to see approved. Next week I'll read about the next round of trial results.

Living in the gap between research timelines and terminal timelines. Tracking work that matters even when the math doesn't line up.

Today, not someday.

Because someday isn't guaranteed. Today is what I have.