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Racing to raise awareness of pulmonary hypertension

This weekend, more than 1,500 patients, family members and friends walked or ran the Race Against Pulmonary Hypertension at Stanford. The 5K race, one of the largest and longest-running PH events in the country, was founded in 2001 by a patient with the rare lung disorder and her family in an effort to promote awareness about the illness. Proceeds from the event benefit the Ewing Family Fund for Pulmonary Hypertension Research at Stanford and the Vera Moulton Wall Center for Pulmonary Vascular Disease.

Given the physical limitations that face many PH patients - such as shortness of breath, dizziness and fatigue from everyday activities - the ability to participate in a race is both symbolic and significant. Mountain View, Calif. resident Nathan Diehl, who has lived with PH for four decades, has completed the last five races - and I had a chance to talk with him before this weekend's event:

When you were diagnosed with the disease?

I was born in 1976 with a congenital heart condition; my two main vessels, aorta and pulmonary artery, had switched places. This caused me to have two separate circulations, body to body and lung to lung, and I wasn't getting oxygen to my body. At the time, the only real solution was a natural shunting procedure known as the Mustard procedure. This redirected the blood flow so I could get oxygen to my body, but a side-effect was dramatically increased blood flow to my lungs, causing pulmonary hypertension. I was seven months old.

What has been your experience living with PH?

When I was diagnosed, my doctors gave my parents a realistic life span of 10-20 years for me.  I, of course, had no idea of this projection. All I knew is that if I got tired playing with friends, I should sit down and relax until I could catch my breath.

As I got older and started visiting doctors as an adult, I was notified of my life expectancy, which always seemed to be about ten years. In 2001, I moved to the Bay Area and after seeing several doctors, I was finally referred to the chest clinic at Stanford...  Thanks to new medications and treatments and personal joy in my own life, I'm happy to report that I've almost doubled my original life expectancy, and I plan on tripling it around the time my two-year-old daughter graduates college.

How does the illness affect your day-to-day life?

I tend to not go places that will cause me to tire easily, like high altitudes or steep grades. Hiking would be great, but I just can't do it. About the most I can do is shop in San Francisco with my wife, and even then we stick to relatively stable areas of the city.

This is your fifth race. Who's joining you, and how long does it take you to complete the 5K?

Every year we're joined by all the family who can make it, and last year we had group ("Team Nathan") shirts made up. I'm excited because this is the first year my daughter will actually be able to walk it.

I walk the race, and it takes me a little over an hour. I'd go faster if I was on my own, but I'm usually just strolling with the family.

What does it mean to be able to participate in the race?

Before my first race, I had a little scare with an abscess on my brain, caused in part by my heart condition. I'm convinced that I only survived that because of the team of doctors who have grown to know me over the years.  Their concern for my well-being and overall quality of life has expanded my view on life, and this race is a small reminder of what I never thought I'd have: a wonderful, beautiful family and hope for the future.

Photo by Christopher Vaughan

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