Kenneth Finch has never been one to waste an afternoon sitting at home. An outdoorsman, handyman, and vinyl sign maker for many years, his Alpha-1 diagnosis was the first time in his life that he thought he might actually have to slow down. But after making a few minor adjustments, he learned to keep doing all the things he loves — while traveling full time. Read on to learn more about Kenneth’s Alpha-1 journey and to find out how he manages his condition while traveling across the United States in an RV.
Where do you go when diagnosed with Alpha-1 Antitrypsin Deficiency and how promising does the road ahead look? At 52 years old, I have grown into the diagnosis of Alpha-1 that I received 16 years ago. It has not been an easy adjustment. My life before my diagnosis was active and limitless. My job as a vinyl sign maker required speed, strength, and the ability to switch gears routinely. I was up and down ladders, crawling around on the ground, lifting materials, moving and shaking over customer vehicles — this was not a desk job. And my home life was just as active. I had just become a father and bought a home that required maintenance and remodeling. I tackled carpentry, auto repair, and lawn care. Outside of my home life, I was an avid camper, hiker, and cyclist. Sitting down and relaxing just wasn’t in my nature.
It wasn’t until an afternoon on a paintball field that the world came crashing down on me. It literally felt like the world was on top of me. I had been sick with pneumonia 8 months before. The consensus was that, after having pneumonia, my body would need time to recover, and I was feeling that slow recovery process for the entire 8 months. I had no sustaining energy, and my thoughts were focused on “How long would it be before I felt like my normal self?” That day I had been running and climbing and feeling the rush of a paintball skirmish. It was my first time taking part in this activity. My heart was racing and the face mask I was wearing seemed to be suffocating me. I was being pummeled by paintballs and anxiety when a dizzying feeling took my knees out from under me. I was carried off the field by friends and, by the time I made it back to the car, I was still gasping for air.
A visit to my family doctor started months of speculation and tests and meds that did not fit the bill. The whole medicine cabinet was thrown at me with no results until a referral to a lung specialist began revealing a pattern. This rare pattern resulted in a diagnosis that I received on my 36th birthday. My genetics had caught up with me and a quiet deficiency had reared its head as a result of the bout of pneumonia that I had just a year before. I had no idea what Alpha-1 Antitrypsin Deficiency was or what it had in store for me. The road ahead was clouded and uncertain. I spent hours, days, months scouring information on Alpha-1 Antitrypsin Deficiency. Months later, I began augmentation therapy. Getting stuck in the arm, on a weekly basis, for an infusion of something my body had no idea how to make. I thought, “Is this what my life is going to consist of?”
So, over the past 16 years, I’ve made some adjustments. My infusions are scheduled every two weeks now and my life and my health have stabilized. My stubborn nature refused to let my diagnosis rule over me. It was and still is, difficult to pass on a rocky climb or take a leisurely and level bicycle ride. But the truth of the matter is, I can still be as active as I was before. The only difference is that I will take twice as long to accomplish my goals. I am aware of my body and what it tells me when I’m involved in any activity. I can still build a deck around the pool. I can still change the ball joints on my truck, tear down the little old barn that is falling apart. I do these things with the mindset that I can still achieve, no matter how long it takes me.
Now, I am at the chapter of my life where the open road is in front of me daily. My wife and I gave up 80% of our belongings — the house, the Airbnb, the pool, the La-Z-Boy, and the mower are all gone. We gathered up the 20% that was left and loaded it into a 37-foot motorhome, along with our dog and our cat. For nearly two years, we have traveled the United States in an effort to do what so many people only dream of doing — to travel and see distant places and share new experiences. Some people call it “glamping” but we just call ourselves “full-time RVers”. We have no permanent address. When the neighborhood gets rowdy or the view gets old, we drive to a new experience. We stay in one place for 2 to 3 weeks and then move on. I’ve learned how to start my own IVs, so now I can give myself my infusions no matter where we are.
I have a support team from Eversana and AlphaNet, including a Coordinator who has experience helping Alphas navigate augmentation therapy while they travel. AlphaNet has been with me from the beginning and with the rest of my team, they encourage and help me through the rough spots wherever we are. My medicine, as well as our mail, is shipped to whatever location we are currently set up in. With a little bit of planning, it’s possible to do almost anything.
What I’ve learned is that Alpha-1 does not have to define you. Your determination to rise above it does. It’s not a box that you’re stuck in, it is merely a wall; an obstacle to navigate around to get to the next point in your life. When I first learned of my Alpha-1, I was a little disheartened. I felt like I wouldn’t be able to do all the things that I used to do — all the things that I still wanted to do. But after really thinking about it, I realized that Alpha-1 didn’t have to stop me. Once you realize that your health condition doesn’t rule your life, you can do anything. While there certainly are conditions that can restrict your life in some fashion, unless you’re six feet under, there are no limits to the things that you can do. Whether something takes you two hours or two days, it can be done.
While I write this in the backyard of Mount Rushmore, my wife and I watch as the smoky haze filters the sunrise and catch a glimpse of hot air balloons pushing up over the trees. Not every destination is filled with this kind of experience, but we’d never know of them had we stayed on the couch at home wishing for an adventure. There is an air quality alert forecast for the next couple of days. My Alpha-1 won’t chase me away, but maybe I’ll just head north up the road a bit.