Living with Pulmonary Fibrosis: Adam’s Rare Patient Story (and World Record Attempt!)

Written by Adam Faatz

Imagine not being able to breathe and spending nine days climbing the world’s tallest freestanding mountain. That is my story, and that is my goal.

Sixty-five people out of every 100,000. That was the rate at which people on a global scale were diagnosed with the deadly disease of pulmonary fibrosis in 2021. Sadly, most of those people are no longer alive.

I was diagnosed with pulmonary fibrosis in 2018 by accident during a surgical biopsy of slow-growing masses in my lungs. Shockingly, it was discovered that almost all of my left lung was not working, and it hadn’t been working since 2011. I just didn’t know it. It was completely fibrotic, and most of it ended up being removed. The disease has progressed beyond this point and is now seen in all three lobes of the right lung.

Many have never heard of pulmonary fibrosis; I surely didn’t at the time of diagnosis. Despite there being over 250,000 new cases a year, it’s a lung disease that is not well understood. It does not have a cure, and it’s progressive, meaning it worsens with time. As it spreads, you lose the ability to breathe, and many will begin to feel as if they are suffocating. For most people, it’s terminal, and the length of time that one can survive varies drastically, but most succumb to it in five years.

Pulmonary fibrosis simply put means scarring of the lungs. It can be caused by many things: autoimmune diseases, environmental factors, medication, and others. To date, there’s absolutely no cure, and the only medication available to help slow down (but not stop) the spread of scar tissue is not available everywhere, and thousands can’t afford it. There are many causes, but usually, it’s not known. Mine is believed to be a cause of the burn pits used in Iraq and Afghanistan.

This disease is a destroyer of families and people’s happiness. It helped lead to my mental health struggles which almost resulted in suicide. It drained my (now ex) wife’s and my bank account, caused anxiety and depression, isolation, and more. Like many people who have chronic illness, I know what it’s like to suffer. I also know that I overcame that suffering mentally. I just needed help, and now I want to help others.

I’ve done a lot of things in life: the US Army, and on and on. After my diagnosis, I felt like I didn’t have a purpose. I began my outdoor journey, becoming the first person with PF to climb NY’s Mt Marcy, the Catskills 3500, and so on. I still need to do more, which is why I plan on climbing Mt Kilimanjaro in January 2024.

Mt Kilimanjaro is the world’s tallest freestanding mountain. It stands just below 20,000 feet. This summit will take me nine days. I’ll cross five ecosystems, and if successful, be the first person in the world with PF to complete this, let alone be the first person with less than one working lung. All in hopes to raise awareness for pulmonary fibrosis. I’ve been blessed to have such a lucky team on my side: Dr. Jan Kasprowicz of NJ’s Elite Sports team, expert respiratory trainer Gilles Essiembre out of NB, Canada, and my world-famous guides, Jim Sumpter and Kristi Paxton of Endeavor Expeditions. This journey will be photographed by Florida-based Chandler Williams of Modus Photo and will be published in Emerald Coast magazine! This has been a long and challenging journey. I was able to lose over 150 pounds in 11 months, and my physical and mental health has drastically improved. I hike every single day with my dog Taco as well as my regularly scheduled workouts with my trainers. I had to push myself beyond what I thought was capable in order to receive medical clearance from my doctors. I was able to drastically improve many of my health issues, which alone is a huge accomplishment to me. Despite that, and to maintain compliance with set standards, I do have travel health insurance, which includes medevac coverage up to 20,000 feet should it be needed.

I am aiming to raise as much money as possible to benefit people around the world. The combined total I earn will be split even among three charities:

  • The Pulmonary Fibrosis Foundation
  • Action for Pulmonary Fibrosis
  • Asthma and Respiratory Foundation New Zealand

This covers Canada, USA, Scotland, UK, Wales, New Zealand, Australia, and more. It truly is a disease all around the planet, which is why I chose this particular geographic location and named this fundraiser OutOfAirAroundTheWorld!

In December, I will be posting to this page a way that everyone will be able to watch my journey on Kilimanjaro live. You can also keep up with me on here, as I will do my best to provide weekly updates or changes. If you wish to follow along elsewhere, you can find me on social media.

From the bottom of my heart to you, I want to send my utmost gratitude to my sponsors, future donors, and past donors. As well as the organizations that have supported me along the way.

If you or a loved one would like more information or need assistance, there is help available. Regardless of your geographical location, you can contact one of the foundations provided here:

NOTE: While sponsors are always welcome to donate or discuss future opportunities with me about desired goals, there is no advertising allowed for the length of this fundraiser across all platforms. This shall include and is not limited to providing the addresses of any websites or social media accounts owned and/or maintained by a private or publicly traded for-profit organization. Any solicitation attempts will be refused in their entirety.

Thank you!

Ready to support Adam?? Click here.

Update (January 17, 2024): Adam’s climb of Mt. Kilimanjaro was a success!

source: Adam Faatz

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