As you get to know me as the new chair of the Pulmonary Hypertension Association, you’ll learn about my connection to PH. You may see “doctor” in front of my name, but I’m not a medical doctor.

Wonder why someone with a PhD in chemistry, who dealt with rocks and minerals for 40 years, cares about PH? It’s all in the family! Soon after I met my wife Debbie, I learned she had lost a sister (late 1970s) to an unfamiliar disease.

In 1993, about eight months after her Sweet 16 celebration, our older daughter Kelly told me she wasn’t feeling well. I took her to the doctor, who diagnosed bronchitis (heard that before?) and sent her home.

About a week later, claiming she felt better, she went on a walk to meet her boyfriend. She later called and asked me to pick her up, and I saw that she had blue lips and her knees were shaking. I took her to urgent care, then to the hospital by ambulance, where she passed away in the ER.

Like my sister-in-law, she was diagnosed with PH postmortem. Connection?

It didn’t make sense that two young and otherwise healthy women in the same family had died of the same very rare disease. My science instincts kicked in, and I started doing library research about PH.

I found a reference to Robin Barst, a PH expert at Columbia Presbyterian, and reached out to her. She explained that researchers at Columbia believed there was a familial component to some PH cases and hoped our family could provide research assistance.

Our entire family, my mother-in-law included, provided blood samples for Jane Morse, whose team eventually identified and published evidence that a mutation on the BMPR2 gene can cause pulmonary arterial hypertension.

Debbie and Tani (our youngest daughter) had the gene, likely passed on through my father-in-law, but neither was symptomatic.

Fast forward to 2005. On a family trip to Israel, Tani became short of breath while trying to climb Mount Masada. Upon our return, an echocardiogram revealed enlargement of the heart.

A right heart catheterization confirmed PH. Tani’s symptoms progressed quickly, and oral medications provided no improvement. She was a 21-year-old varsity softball player who couldn’t enjoy life.

After a trip to D.C. where she needed a wheelchair to tour the National Zoo, she asked her doctor to begin Flolan treatment, even though it was quite invasive. It was an opportunity for a better life. She improved, went back to school, became a teacher’s assistant, then graduated as a medical assistant and lived life the way she wanted.

After a transition to Remodulin (treprostinil), a less challenging treatment, everything appeared fine. But two weeks later she wasn’t feeling well, and we took her to a local hospital, suspecting dehydration.

After a couple of days on IV fluids, a cardiologist determined that her heart function was declining and got her an ambulance to Columbia. She didn’t make it through the afternoon.

In 2012, Debbie started to show PH symptoms. Treated with triple therapy, she was doing well until six months ago when she experienced a rapid decline. Sotatercept (Winrevair) to the rescue, and it made a big difference. Today she is back to walking six to 10 miles a day.

Tani’s passionate PH advocacy is the reason I got involved with PHA. She championed a PHA support group for young adults (now in place), mentored other young women with PH and made a big impact.

I just knew I had to follow her footsteps. In 2015, after retirement, I made the unusual request to join PHA’s board. And for more than 10 years, I’ve been using my 35-plus years of technical and management skills and experience to help PHA achieve its mission.

My daughter was committed, and I’m personally committed, to ensure that everything PHA does is mission- (patient-) focused. When my term is complete, I want the organization stronger, more efficient and even more mission-committed than when I started.

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