The Power of Inspiration #LetMeBeYourLungs—An Athlete’s Perspective

May 29,2018

As an athlete of Team PHenomenal Hope, I have the opportunity to race not only for Team PH, raising awareness and funds for research and our special need fund, but we are also are given the opportunity to literally race for someone, or—as I would say—with someone who lives with Pulmonary Hypertension (PH). And this opportunity, our Let Me Be Your Lungs program, is such a special aspect of what we do. In fact, it’s helped improve my life and my health.

I have known Ornah Levy since 2013, when I met her in Long Beach, California. From the beginning, she has been a great friend to Team PHenomenal Hope and to me. When Team PH started our Let Me Be Your Lungs program, it was only natural that I race for Ornah.

Over the years, I’ve raced as Ornah’s lungs, riding my bike across deserts and up mountain passes and sharing her story when people asked me, “What is Team PHenomenal Hope?” or “What is pulmonary hypertension?” The real question we tell people with Team PH is not “what” is pulmonary hypertension, but rather “who” is pulmonary hypertension.

And, in turn, Ornah has kept me grounded and on my bike, always reminding me why I’m doing this. She has literally kept me going. There are times I would not have pushed the pedals if it were not for her.

I have a very full and satisfying life as a physician. I love my job taking care of patients, building our program, and growing our nonprofit. In the winter and during the week to work out, I ride a Peloton bike, and try to get in at least a 45-minute workout everyday. At the end of every week, I feel I’ve given it my all and have done the best I could. I’m tired, but satisfied, much like an athlete feels after finishing a race.

But when I’m tired and feeling overwhelmed, it’s really easy to give up the training, or eating right, or sleeping well. But then I have Ornah, who has become my training buddy, keeping me accountable.

I was out in California the week before last taking a course and had the opportunity to meet up with Ornah, her husband Jonathan, and her friend, Allison. While we all caught up with stories, she told me how hard she is working to get rid of her extra fluid. Lately, Ornah has struggled with fluid retention, which can happen with pulmonary hypertension. The pressures in patients’ lungs make it harder for the right sides of their hearts to pump fluid forward effectively, so it backs up into their legs or abdomens. They gain fluid weight, literally pounds on the scale, and it takes work to get the body in balance again. When a PH patient struggles with fluid retention, they have to tee total all of their fluid intake, avoid drinking more than 1500 cc of fluid per day, including things like ice, soups, and tea, and take diuretics, which are medicines to help them get rid of the extra fluid using their kidneys.

Lately, Ornah has been working hard on her fluid-retention struggles. She was even in the hospital for awhile. Since getting out, she has also tried to live a full life. In fact, the day after our dinner, she was going to attend a friend’s wedding. Ornah epitomizes “carpe diem,” because while she lives with PH and now has to deal with her fluid issues, she is not defined by it.

But as we sat at that table, she told me she was inspired by me and that she had done her seated stair stepper that day. I saw my friend, who had just been in the hospital and who is working to fit in her life around her current focus of getting healthy again, a person who didn’t give up and doesn’t give in, talking about doing her stair stepper and taking the many necessary steps to get healthy again.

What I saw in Ornah was someone who is working just like an athlete to take care of her body, training to get herself as healthy as possible, and not giving in. And I realized right then and there that I needed to do the same. I realized I needed to make my own training happen, if not for races, at least for my health. I made the pledge to get back on my bike more consistently and get serious again.

After the course, I went back to Denver and found a message in my Messenger.

“Did you get to Peloton today?
Here’s mine:

Stepper (arms & legs):
44-50 RPM
Level 1 – 1.5
15 watts
30 calories
1.5 miles
15 Minutes”

That was when we started sharing our workouts back and forth.

You see, in reality, it’s Ornah who inspires me. She lives with PH, takes continuous IV medication to keep her pulmonary pressures in check, and gets on her stair stepper, putting out Watts every day. She exudes her motto, “carpe diem.” And now she reminds me to get on my bike, take care of myself, stay healthy, and together we continue our journey in this PH race with Team PHenomenal Hope.

I am humbled by and grateful for this special woman, Ornah Levy.

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