St. Paul, Minn. (June 8, 2017) – Eleven years after doctors diagnosed her with pulmonary hypertension (PH), Pamela Combs of St. Paul, Minn., is proving to herself and others that new treatments and a positive outlook can help extend and improve patients’ lives.
Combs will address attendees June 24 at PHA on the Road Twin Cities, a free Pulmonary Hypertension Association (PHA) patient forum — sharing how a similar gathering ten years ago was a game changer in her PH battle.
Pulmonary hypertension (PH) — a progressive, life-threatening and debilitating disease — is characterized by high blood pressure of the lungs due to narrowing of the pulmonary arteries. It forces the right side of the heart to pump so hard to move blood into the lungs that it can lead to death from right heart failure. Common PH symptoms are non-specific and can include shortness of breath, fatigue and chest pain. Consequently, this disease is often misdiagnosed — as asthma, for example — leading to delays in proper treatment and costing patients valuable time. PH can present alone or with other illnesses, including congestive heart disease, connective tissue disorders, COPD and many other diseases. It affects infants, children and adults of all races and ethnic backgrounds. Without treatment, median patient survival for those with pulmonary arterial hypertension (PAH), one form of PH, is only 2.8 years from the time of diagnosis. However, with early and accurate diagnosis, treatments can extend and improve the quality of life for many living with the disease.
PHA on the Road is an education program for PH patients, caregivers and family members, and those who might be at risk for developing the disease. The Twin Cities forum takes place 8 a.m. to 5 p.m., Saturday, June 24, at the Intercontinental Saint Paul Riverfront in St. Paul, Minn., and includes free breakfast, lunch, parking and child care. The forum’s programs include interactive presentations, educational sessions and networking opportunities for patients, caregivers and PH medical experts in the region. Session topics will include: Oxygen: How to manage it at home, at work and on the go; Clinical trials and new treatments; Diagnosing PH; Finding insurance coverage and making it work; Healthy diet and lifestyle choices in PH: The important benefits of exercise and rehab programs in PH.
Combs learned she could have PH during a physical exam that included an electrocardiogram (EKG). She had been experiencing shortness of breath that she believed was related to a thyroid condition. Her physician, who had studied under a PH specialist, noticed that the right side of her heart was enlarged, indicating it was overworked, possibly the result of PH. A couple weeks later, a right heart catheterization confirmed Combs’ PH diagnosis.
The news devastated the then 48-year-old empty nester who’d been looking forward to a long life traveling the world with her husband. Like many PH patients, her survival meant being tethered to portable oxygen along with adhering to a regimen of oral medications. She canceled a long-planned trip to Hawaii and began experiencing depression and feeling hopeless. When Combs’ PH specialist recommended that she and her husband attend PHA’s Twin Cities PHA patient and caregiver support group, she refused. “I wasn’t comfortable. I feared I was going to hear a lot about people’s problems and of deaths,” she said.
After Combs’ husband attended several support group meetings without her, he told his wife about the PHA International PH Conference and Scientific Sessions, an event held every other year for PH patients, families, medical professionals and researchers, which happened to be held in Twin Cities that year. He persuaded her to attend with him as a volunteer goody bag stuffer.
“The Conference was a turning point,” she said. “The most meaningful part was meeting other patients and learning firsthand that you don’t have to let PH take over your life. I met people who were examples that while life would be different, it could still be full.”
In the decade since attending the PHA Conference, Combs has become an active support group member. She participated in PHA fundraisers and began making and checking things off a bucket list she would never thought possible early in her diagnosis. Combs and her husband have traveled by plane to California and Florida, and they’ve made many road trips to visit family in Michigan where they also have a vacation cottage. By learning about how to live and travel with oxygen, she swims, takes aqua aerobics, kayaks, sails, camps, hikes, goes crabbing and even takes an occasional ride on a Segway.
At age 60, Combs recently celebrated her 40th wedding anniversary and says there are still things on her bucket list that are not crossed off, like snorkeling and ziplining. She also plans to meet PH patients in her area at the PHA On the Road event. For more information and to register to attend the forum, please go to https://phassociation.org/ontheroad/stpaul.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation