Breaking Expectations

With two lung transplants, Samantha refuses to let her Cystic Fibrosis rule her active lifestyle. 

In my opinion being strong is a requirement if you have a chronic illness, it comes with the territory. Strength is being capable of fighting a war; which coincidentally, is what I have been doing for the past 36 years. I have been fighting a war with Cystic Fibrosis, and even though it has tried to knock me down more times than I can count, I’m still standing.

This September I will reach median life expectancy for someone living with CF, 37. I really can’t put into words the feeling I get each year that I grow older. I’ve been told not to bother with going to college because I wouldn't live long enough to finish, or that I’d most likely never live on my own, have a career, or meet anyone that would put up with the suffering that loving someone with CF causes. It makes each day I open my eyes that much sweeter. It takes strength to defy your illness and create a life for yourself – not based on the statistics or what others say. 

As I look back on my journey I am amazed at what the human body and mind can endure and adapt to. I have been blessed with the gift of life three times now, with the first being most obvious, my birth. My mom, RIP, was told like most mothers in the early 80’s not to get used to the idea of me sticking around – my CF meant that I would most likely not live past the age of 10.

I’ve always been an active person, pushing myself even when I felt like I couldn’t go anymore. At times this got me into trouble as I didn’t always listen to my body. I would end up sick and in the hospital for weeks at a time. I didn’t want this disease to hold me back. I didn’t want it to be the reason I failed. If I gave it this “power,” then in my mind I let it beat me. Like it had some say in whether or not I could achieve things in my life. Most of all, I didn’t want people to pity me. No matter how much I fought the inevitable progression of CF, in my mid 20’s I knew I was slowly suffocating, and at the age of 27 my lung function began to decline rapidly to the point where I needed a lung transplant in order to survive. CF was beating me.

On August 13, 2011, I underwent my first life-saving operation and recovered quite well. I was reborn! I could finally breathe and was taking full advantage of it. I was winning climbing competitions, mountain biking, snowboarding, advancing in my career, and actually allowing myself to think about the future. I finally felt free; almost as if the war was over. I was able to be spontaneous and let my guard down. For lack of better words, I was ignorant about my mortality. It wasn’t until about five years later that I began to feel short of breath again. I could feel something was wrong with my donor lungs. I went from 115 to 85 pounds in a matter of two months and was back on supplemental oxygen 24/7. Statistically speaking there is only a 50% chance that lung transplant patients will be alive after five years. Once again, the odds were stacked against me. I was going through chronic rejection and needed another lung transplant. After 31 years, I had gotten a taste of what it felt like to be physically strong, to be a healthy, productive, thriving woman and all of that was suddenly gone. My illness seemed to have found a back-door way into my life. I was literally plucked from my existence one day, and admitted back into the hospital. The universe worked its magic, keeping me alive with the machines I thought were a distant memory. It was a stark reminder of how fragile life really is. During that time, I was also diagnosed with parathyroid cancer which needed to be removed before I could be re-listed for another transplant. As I lay bedridden not able to care for myself, I longed for the life I had just been an active participant in. Maintaining my mental strength and staying optimistic was my only option. I wasn’t going to let CF break me and on October 11, 2016, I was reborn once again!

I am now slowly getting back to the activities I enjoy, taking one day at a time. If it weren’t for the selfless act of strangers signing up to be organ donors I would be but a memory to my friends and family. Each day I am continuing to fight the war with CF, and like you, trying to survive everyday life. I’m happy I can still say that. Strength is the ability to persevere no matter how hopeless the situation may seem – to not take our time for granted, to appreciate one another. I feel grateful to have learned this many times over. All we really have is today. Thank you for letting me share a small part of who I am.