Bree Schuette

I still vividly recall the first time I realized something was terribly wrong. It was Easter Sunday, just weeks after I had completed one of New England’s toughest mountaineering challenges—summiting all 48 4,000-footers during a single calendar winter.

A Moment of Realization

I had never been fitter—or so I thought. It was meant to be an easy pre-meal hike with my young teen and my mountain climbing bunny. But shortly before the final push to the summit, I noticed my son was far ahead of me. In that moment, I realized that if I didn’t lay down on the snow-covered trail, I was going to collapse. My breath was too ragged to even call ahead to my son for help.

Shivering in the snow, my breath slowly returned to normal. By the time we made it back to the car, I had convinced myself it was a fluke. Maybe I was tired from a tough week at work or hadn’t fueled myself well enough. But a week later, when I found myself face down in a snowbank on a different mountain, I understood it was more than a fluke. My life had changed.

The Diagnosis Journey

In hindsight, the answer should have been clear. I have relapsing polychondritis—a rare autoimmune disease that attacks cartilage throughout the body, particularly affecting the trachea and lungs. Despite this clear connection and good doctors at academic centers, it took far longer than it should have to hear the diagnosis: tracheobronchomalacia (TBM). There is a significant lack of knowledge in the medical community. As I later found out, my years of high-intensity endurance athletics likely masked some of my struggles.

The Reality of Living with TBM

Now that I have a diagnosis, I wish I could say everything has been smooth sailing. But that would be untrue. Sugarcoating the reality of tracheobronchomalacia doesn’t help anyone. People often ask me what I struggle with the most, and my answer frequently comes down to two things.

First, my life sometimes seems terrifyingly small compared to what it was before. I miss my beloved mountain vistas so much. I often wake up in tears from dreams about bluebird sky winter days on the mountains. Yet, despite this sadness, I still cling to hope—hope that an eventual tracheobronchoplasty will allow me to summit a mountain again and raise my hands in pure exhilaration.

Second, I struggle with the sheer financial cost of my treatment for relapsing polychondritis and TBM. Our broken insurance system deems many of my potential treatments as experimental and, thus, uncovered. I never thought I would be forced into a situation where I had to make hard decisions between medical bills and basic necessities. I never imagined that while I lost my breath, I would also have to bury my pride and reach out for help through GoFundMes and MealTrains.

Finding Strength in Community

And yet, despite this sadness and these challenges, I realize I am blessed in this fight. I have incredible parents, an amazing mountain climbing bunny, and a community that has offered support in countless ways. I also have a strong medical team. This may be my hardest mountain to climb (EVER!), but I am a fighter, and I have no intention of giving up.

The Path Forward

As I navigate this journey, I often reflect on the importance of awareness and advocacy. Raising awareness about tracheobronchomalacia is crucial. It can lead to better understanding and treatment options for those affected. I believe that sharing my story can help others feel less alone. It’s a reminder that we are not defined by our struggles but by how we face them.

Embracing Hope

Hope is a powerful force. It fuels my determination to seek out new treatments and advocate for better healthcare options. I want to inspire others to do the same. Together, we can push for changes that will improve the lives of individuals with TBM and similar conditions.

Conclusion

In closing, I want to emphasize the importance of community and support. We are stronger together. If you or someone you know is facing similar challenges, reach out. Share your story. Let’s raise our voices and advocate for change. We can make a difference, one step at a time.