Persistence Pays Off

Despite Skeptical Doctors, Inconclusive Tests

BY DANA FALK

DANA FALK OF PROVIDENCE, RHODE ISLAND, was a 46-yearold mother of three teenage daughters when she was diagnosed with pulmonary hypertension (PH) in 2010. Today, she and her husband support the Pulmonary Hypertension Association’s mission as annual donors. In 2005, I became acutely aware that I was having trouble breathing. I exercised regularly and maintained a healthy weight, so it didn’t make sense that I couldn’t jog for more than a couple of minutes without gasping for air. My trainer was continually reducing my workout routine. I knew something was very wrong.

I watched a program called

“Mystery Diagnosis” on the Discovery

Channel. The subject of the program was a young girl who ultimately was diagnosed with PH. I had never heard of the disease, but it struck me as similar to how I was feeling. I wrote down the name and decided to investigate.

Several doctors dismissed my suspicions. I took many tests, all of which came back with no remarkable results. One pulmonologist told me my lungs would sound like tissue paper crinkling if I had PH. Because they didn’t sound like that, he said I couldn’t have PH. But he referred me to another pulmonologist.

I was relieved when my new doctor assured me he wasn’t going to let me go until we found out what was wrong. A perfusion test yielded a clue, and I underwent a right heart catheterization. After five years of wondering, I was diagnosed with idiopathic pulmonary arterial hypertension. Fortunately, I’m responsive to vasodilators.

IMPORTANCE OF SELF-ADVOCACY Throughout my journey, I realized the importance of advocating on behalf of my own health. When you keep insisting that you’re not well, even though tests show nothing and you appear to be fine, it’s incredibly frustrating.

Dana Falk (second from left) with daughters Leah, Audrey, Rachel. Opposite: Dana Falk with husband Eric.

‘My intent today is to show just how elusive PH is, even to an attentive doctor who you’ve worked with for years.’

My intent today is to show just how elusive PH is, even to an attentive doctor who you’ve worked with for years. Thankfully, the pulmonologists I saw said they believed me, despite test after test that revealed nothing.

I knew they were trying to reassure me that they didn’t think I was exaggerating or making up symptoms. I was glad to hear it at the time, but it did make me worry for other patients. I can’t imagine what it would have been like if they hadn’t believed me.

Now, I am lucky to be able to take a pill each day and basically function as I want to. I still play tennis, but I no longer have the endurance for very long rallies. I still work out, but my trainer understands that I can’t maintain exertion for too long.

Any vascular weakness I had before is now exaggerated and can be uncomfortable. We tailor my workouts and our family activities, so they are safe for me.

GALVANIZING THE COMMUNITY

Having PH can be very lonely and frightening. As soon as I started looking into PH, before I had been officially diagnosed, I found PHA and saw what an amazing resource it was. PHA gathers patients who feel alone and gives them a place to find camaraderie, information and hope. I love reading about other people with PH, treatment advances and professionals who dedicate themselves to this niche of medicine. I feel a connection to the other patients I read about.

It is a comfort to know one organization does so much for PH patients and that we have so much access to it.

PHA, which keeps getting stronger, galvanizes people to push for government funding and raise funds and awareness. It gathers various constituencies to learn from each other and advance understanding and treatments, and it gets information to patients not just at the start of their PH journey, but as new information comes along.

PHA is truly the heart of the PH community, and donating is akin to giving someone oxygen.

I use the knowledge and resources PHA offers to advocate on behalf of myself as a patient. I also donate to PHA as a form of advocacy — to help the organization continue its mission and demystify PH for future patients. I encourage others to do the same — PHA is a wonderful and solid support for our community.

HELP SUPPORT PHA’S MISSION of extending and improving the lives of those affected by PH. Visit PHAssociation.org/donate to make a gift today.