Mary Kitlowski: Running On Air

Mary Kitlowski was an avid runner for years until 2001 when a debilitating lung infection made any type of physical activity feel impossible. She was diagnosed with a rare disease called Primary Ciliary Dyskinesia and had to use supplemental oxygen; though she tried, she did not run again until 2013. With her husband's encouragement, Mary began to build up her endurance little by little. In September 2014, she ran a 5k with a portable oxygen concentrator on her back. Soon thereafter she started the "Running On Air" campaign to educate others about lung diseases and inspire those who use oxygen to live full and vibrant lives.

We caught up with Mary to learn more about the "Runner's World" competition.

Q: How long have you been a runner?

A: I started running in my early 30's. Running had never been easy for me with my chronic cough and "asthma" issues. One day I decided I wanted to try running. I found a plan that said it would have me running for 30 minutes within a month. It worked, and soon I was up to running 3-5 miles at a time. Then in 2001 I got one of my lung infections requiring IV antibiotics. Several months later I tried running again and I couldn't even run for a minute. I tried following the plan again but its starting point of running for a minute at a time was more than I could do. I tried a couple of times a year to see if there was any improvement, but the attempts would leave me wiped out and unable to do much the rest of the day.

Q: When did you start running with oxygen?

A: I started in March of 2014. Here is how it came about: Two years ago, I decided to try running again. My husband suggested I try running just for 30 seconds or less if necessary. I started running for 15 seconds at a time. When I checked my blood oxygen levels with my pulse ox, I saw my oxygen levels were dropping down to the low 80's and sometimes upper 70's. I let my doctor know and she prescribed oxygen for exertion. None of the supply companies in my area had a portable oxygen concentrator available and everyone wanted to drop off a house unit and tanks. I continued exercising without oxygen for 6 months until I contacted a company directly and I’ve been renting out-of-network from them since March 2014.

Q: How did you get involved in raising awareness for COPD?

A: My campaign is to raise awareness for lung diseases in general and for those who use oxygen. I have a rare lung disease called Primary Ciliary Dyskinesia (PCD). There are an estimated 25,000 people in the U.S. who have PCD, although there are a little over 500 confirmed cases. PCD patients share some similar issues and symptoms with COPD patients such as a chronic cough, developing bronchiectasis, and a progressive decline of the lungs, to name a few.

My mother-in-law passed away April 19, 2015 after battling COPD and other health issues. For almost two years we were battling getting her the oxygen she needed to live her life. Her supply company was initially limiting her to 20 tanks a month. This only allowed her outside of her house for about 15 hours a week. She was able to get them to supply her with more tanks when she needed them, but it was the start of her becoming less active. I don’t want anyone who requires oxygen to live be denied living the life they want.

My sister has the same lung disease I do and had a lung transplant last year. When she first went on oxygen she was working part-time and had two small children, ages 1 and 4. When she received her first delivery, she told the driver there weren’t enough tanks for her to go to work that week. The driver replied with “People on oxygen don’t work.”

These are the kinds of misconceptions I’m out to change.

Q: Tell us more about the "Runner's World" competition and your campaign to change misconceptions about living with lung disease.

A: Runner's World is a magazine, focused on running, which publishes 105,000 issues every month. They are having a contest to find the “Most Awesome” runner to be on the cover of their December issue. When I saw the ad in "Runner’s World", I decided to submit my application. How great would it be to have a runner on the cover wearing oxygen? It would generate awareness of these diseases and it would cause people to see those of us on oxygen in a different light.

The contest itself has three phases. The first phase is going on now and runs through July 22. In this phase the contestants need as many votes as they can get. People can vote once a day through July 22. Although these votes don’t guarantee moving on to the next phase, they are considered and will be used in the other phases of the contest. In the second phase, the judges pick 100 contestants to move on. This phase also includes voting and the male and female with the most votes are considered the “Reader’s Choice” winners and will be semifinalists. Voting for this phase goes from July 27-Aug 16. Again, people can vote once a day during this time. In the final phase the judges pick 4 additional men and 4 additional women to join the Reader’s Choice winners to select one male and one female for the cover. If they follow last year’s spread, they will also include stories in the issue about all the semifinalists. Unfortunately, you have to have a Facebook or Twitter account to vote. This is how they track who has voted.

Q: Tell us more about your "Running On Air" campaign.

A: In September of last year I participated in my first race, a 5K. I wore my portable oxygen concentrator on my back. In October I participated in the Army Ten Miler. With a friend’s help, a Baltimore news station did a story on me. It was at that point that I decided to start "Running On Air" to raise awareness of PCD, lung disease in general and oxygen needs. I created a website, "www.RunningOnAir.org", and I have a Facebook page called "Running On Air". I am doing what I can to raise awareness. One of my goals is to run a race in all 50 states. When I run in a new state I try to get news coverage to hopefully bring awareness of oxygen issues, at the least. I ran in 3 states last year: Pennsylvania, Virginia, and Maryland. I ran in Florida in January, and will add California, Minnesota, New Jersey and Texas to this year’s list. I have three big visions for change. The first is to fix how we get oxygen/how oxygen is covered. Between dishonest suppliers and legislation on oxygen pricing, it is those of us on oxygen who are paying the price, often with our health and our lives. The second is to change legislation around drug trials. Currently the FDA requires large groups of patients for statistically significant test results. The problem with this approach is when they start combining too many other factors into the mix that if the studies fail, it fails for everyone, even if there was a subset that did well. I would like to see the FDA take into account small disease groups, even though they aren’t statistically significant. My third vision is an oxygen store. Somewhere where you can try out different portable oxygen concentrators or home units to see what best fits your needs. Then have that covered by insurance.

Q: What inspires you to continue racing?

A: I race to make a difference for those with compromised lungs. If even one person who sees me thinks, “I don’t have to be limited by my disabilities or by my oxygen," then my running is worth it. If one person who sees me thinks, “I didn’t know people on oxygen could do that,” then my running is worth it. If my running changes what kinds of oxygen and oxygen delivery systems are readily available to those who need it, then my running is worth it.

Q: What advice do you have for others who would like to have an active lifestyle but feel discouraged?

A: When your lungs are compromised, it is hard to start. Shortness of breath and the fact that it takes a lot more effort can be scary and/or discouraging. Don’t let that stop you, though. Being active is one of the best things you can do for your health. You don’t have to sign up for a half marathon like I do. You can walk around your neighborhood or go to the gym. Start slow. If you’re like me, slow is pretty much the only speed you might have. Give yourself time to build up and don’t try to take on too much at once. You might have setbacks. Don’t let these stop you. At least once a year I am on IV antibiotics because of a lung infection. If I’m really feeling sick I’ll take it easy. Once I feel better, I’m back in the gym, IV and oxygen included. You will likely be discouraged that you can’t do things the same way you used to do them. Don’t let this stop you. You aren’t the “you” you used to be. You are the “you” you are now. Be the best now “you” you can.