The Pulmonary Hypertension Association (PHA) is organizing a series of events, called “PHA on the Road: PH Patients and Families Education Forum,” to give the pulmonary hypertension (PH) community a free, day-long platform through which to network with other patients, medical professionals, and PH experts.
Two upcoming PHA on the Road events are set for Saturday, Oct. 1, at the Grand Hyatt Washington, in Washington, D.C., and for Nov. 19 at the Tampa Marriott Waterside Hotel & Marina, in Tampa, Florida.
Each event is open to PH patients, people experiencing PH symptoms, and people who have PH-related diseases and are at greater risk for developing the condition – such as coronary artery disease, high blood pressure, autoimmune diseases, and sickle cell anemia — as well as their family members and caregivers.
To encourage attendance and engagement, the PHA asked Nicole Cooper, a PH patient, to tell her story. Cooper, from Baltimore, knows first-hand how PH can suddenly affect a person’s life. In a press release, Cooper talked about how she found out she had PH.
It started in 2008, at a time Cooper thought herself to be in top physical shape. She started suffering from severe cramps in her left calf, so painful that she went to a hospital emergency room for treatment. Doctors soon identified blood clots, and she was quickly admitted.
“I immediately started feeling very short of breath and very faint, I could barely speak,” Cooper said. “The nurse got me a wheelchair where I collapsed. In that short amount of time the blood clots had moved to both of my lungs.”
Cooper was given blood thinners and discharged. But her health continued to decline, and months later she was diagnosed with hypertension. She took blood pressure medication for two years, until she was finally diagnosed with PH by a pulmonologist who examined her using two key tests, an echocardiogram and a six-minute walk test. The tests confirmed the pulmonologist’s suspicion: “He gave me six months or less to live,” Cooper said.
Devastated, Cooper turned to the University of Maryland, where a PH specialist put her on a combination therapy. Cooper’s PH was caused by blood clots in the lungs, a rare condition known as chronic thromboembolic PH (CTEPH), which can be treated through surgery to remove the clots blocking the lungs’ arteries.
Because Cooper had CTEPH, her doctor send her to the University of California San Diego Medical Center to undergo potentially life-saving pulmonary thromboendarterectomy (PTE) surgery.
“My lung pressure started out at 136,” said Cooper. “After surgery it’s now at 39. I’m not cured of PH 100 percent, but I’m breathing better and living life to the fullest!”
Cooper is encouraging others to seek help and support from a caring community to fight their disease; she also heads her own support group, one of more than 275 that the PHA sponsors nationwide.