Living life to the full with cystic fibrosis

Chris Kvam is an attorney living in New York. He’s also a husband, an athlete, and he has cystic fibrosis (CF). Here’s his story.

11 March 2015
by Candice Verwey

“I was diagnosed in 1984 at a time when the prognosis was quite grim for people with CF. Today, thanks to considerable advances in drug development, the average life expectancy for people born with CF is close to 40 in those countries where access to treatment and medication is the norm. The treatment burden remains very high – I do upwards of two hours of medication and physical therapy every day.

“Over the past 30 years I have developed several coping mechanisms that I use to maximise my health and encourage adherence to my treatment regiment. These sources of positive reinforcement help me motivate myself and maintain a positive attitude about life in general, allowing me to reach many of my goals.

“Over the last eight years I have run a marathon, completed a half Ironman triathlon, hiked mountains, skied numerous cross-country ski marathons, and cycled thousands of miles on my bike. Having those accomplishments under my belt makes it much easier to sign up for other challenges, and the aerobic base fitness I have built over years of training makes many things possible for me.

“I know many people who have worked as hard as I have and are not able to do the things I can do, but I would like to encourage anyone living with a chronic illness to do what is within their power to live a full life.”

Chris offers these four tips for thriving with CF:

1. Maximise your potential.

“In the face of living with a chronic progressive illness, I place high value on maximising my potential. There are some harsh realities that accompany life with CF. IV antibiotics aren’t fun, nebulisers aren’t fun, and polypectomies are definitely not fun. Given all that unpleasantness, I do stuff that I like to do when I’m not doing those things. I like to run, I like to ride my bike, and I like to ski. Physical exercise is not more treatment, I do it because I love it. It is a break from the many not-so-fun things about CF. 

2. Approach goal-setting sensibly.

“Healthy goal-setting requires that the goal be realistic, yet still challenging. I’m not going to climb Everest. Due to health risks, expense, likelihood of death, and almost certain spousal abandonment, it is not reasonable for me. Marathons are tough, but they are in the range of what’s possible, therefore, running a marathon (preferably faster than my first one) is a reasonable goal for me.

3. Dream big.

“I would rather over-reach and fall short than not try at all. If my parents had asked my first CF physician at my diagnosis in 1984 what the chances were that Chris would be an attorney, married, and running a marathon at age 33, I don’t think they would have liked the answer. As it turns out, the answer they would have heard would have been limiting. Instead, they were told, ‘Treat Chris like a normal child, and when he gets sick, we’ll deal with it.’ I have no desire to be ‘normal’, but I’m glad my physician gave my parents hope and didn’t allow them to limit my potential.

4. Be grateful for what you are able to do.

“Gratitude means a lot to me. I’m incredibly thankful that I have the ability to do so many of the things I love, and I celebrate that. I’m also thankful for the support I receive from my wife, family and friends that makes so much of what I do possible. Every time I ride my bike over some ridiculous hill, and enjoy the descent, I acknowledge the gift. Every day when I see my fitness carry over into maintaining my job, juggling many responsibilities, and making parenthood a possibility, I’m grateful for that opportunity.”