Before Beth Slaunwhite was diagnosed with pulmonary hypertension (PH) she spent years trying to figure out what was wrong with her health. She enjoyed playing sports, but couldn’t run or jog for very long. In the months before doctors identified her illness, her symptoms got worse. She was often short of breath, and experienced fatigue and chest pain.
“I thought I was just out of shape, but the more I exercised the worse it got,” she notes. “I was always struggling for air. Thirty seconds into an incline I had to stop. I would almost pass out.”
Pulmonary hypertension is a rare, life-threatening condition that affects the lungs and heart. It causes arteries in the lungs to become narrowed or blocked, making it harder for blood to flow through. People living with PH experience high blood pressure in the lungs, which can lead to an enlargement of the heart and ultimately heart failure. There is no cure, and without treatment life expectancy is less than three years.
Patients are often misdiagnosed, because PH can be mistaken for asthma, and shares similar symptoms with more common heart and lung conditions. Sometimes the disease is genetic, but it can also be triggered by other illnesses, such as blood clots in the lungs or a connective tissue disorder. In some cases, the cause is unknown.
Slaunwhite, a 58-year-old mother of four, was diagnosed with PH in 2016. In her case, the disease is progressing more slowly than most. While very difficult to pinpoint in its early stages, there were hints of trouble from early on. As a teenager she was athletic but didn’t have much stamina. She was pretty good at sprinting but didn’t have the energy for distance running, On the basketball team, she would stop to catch her breath after one turn around the gym, as her teammates continued to race around the court.
Doctors had tried to figure out what was causing her condition, only to come up short. At first, they thought she had allergies or exercise-induced asthma.
Slaunwhite grew weary of seeing doctors and trying to decipher her mystery illness. Instead, she raised the white flag and tried to live as best she could with the symptoms. Over the years, that became increasingly difficult. She could no longer walk from her car up a slight incline to her work at the local hospital without stopping to catch her breath. Also, she began feeling more light-headed at work, and was worried she might faint.
Without a concrete diagnosis, she developed a sense of shame around her slow pace and lack of stamina. When she could not keep up with a 78-year-old friend, she pretended her fatigue was due to a bout of pneumonia. She recalls walking to a restaurant with her work colleagues and telling them her foot was bleeding from a cracked heel and they should go ahead without her.
“A lot of us lie. We pretend we are stopping to look at flowers, or an interesting tree,” she notes. “There is a shame among PH patients that you can’t keep up with anybody. We don’t know what is wrong, and we think we are fat or lazy or out of shape.”
In 2015, after rushing to the ER feeling faint and with chest pain, a cardiology resident requested she receive an echocardiogram. While not a definitive test, it provided doctors with the information they needed to identify pulmonary hypertension. Slaunwhite is now receiving treatment and has seen some modest improvements in her condition. She has also learned to conserve her energy and do everything in phases.
She would like Canadians to be more aware of the key symptoms of PH: unexplained shortness of breath, chest pain, fatigue, and light-headedness. She also encourages anyone who feels they are at risk to ask their healthcare providers for an echocardiogram. The earlier the diagnosis, the better the chances of getting prescribed a treatment that may slow the disease’s progression.
It is also important, she stresses, for Canadian doctors to have more say in the range of therapies PH patients have access to. While it is a difficult disease to live with, she is confident research now underway will lead to better outcomes for patients.
“I know it will be better for the next generation,” she says. Since the first targeted therapy, look how far we have come. I truly believe we are living longer.”
This story was created by Content Works, Postmedia’s commercial content division and Patient Diaries, on behalf of Innovative Medicines Canada (IMC) and an IMC member company.