Kevin Mayhood-Paskawych, 30, of Marietta was on a ski trip in Truckee, Calif. last January when he had a fainting episode that landed him in a small local hospital there.
Back in Marietta and with continuing symptoms, his local cardiologist diagnosed him with congestive heart failure and cardiomyopathy.
"I had an enlarged heart, but he wasn't sure what was wrong with my heart to cause the enlargement," said Mayhood-Paskawych.
SHARON BOPP The Marietta Times
Teresa Asselin-Hayes and Kevin Mayhood-Paskawych, both of Marietta, trade information about their diagnoses of pulmonary hypertension Wednesday. They are working to raise public awareness of PH.
What's more, the doctor said he would most likely need a heart/lung transplant to survive.
Fortunately, the cardiologist had Mayhood-Paskawych get a second opinion at the Ohio State Medical Center in Columbus.
This August, he was diagnosed with Idiopathic Pulmonary Arterial Hypertension, or high blood pressure in the right side of the heart and blood vessels between the heart and lungs. PAH is one of five categories of PH.
Symptoms of pulmonary hypertension:
Shortness of breath.
To get help
Go to www.phassociation.org/Patients/FindADoctor to find a list of PH specialists in Ohio. There are currently no PH specialists in West Virginia.
According to The Cleveland Clinic, the incidence rate for PH is 2 per 1 million adults in the U.S.
Although there are at least five individuals in the Mid-Ohio Valley diagnosed with a category of PH, it is not known why this number is elevated, said Teresa Asselin-Hayes, 57, of Marietta, who has also been diagnosed.
Without treatment, the median survival rate for PH is approximately 2.8 years. The mean duration from symptom onset to a confirmed diagnosis by right heart catheterization is also 2.8 years.
For Asselin-Hayes, a PH diagnosis took even longer.
"It took about four and a half years to get a proper diagnosis," she remembered.
Asselin-Hayes was actually diagnosed with HP in 2003 and saw an HP specialist in Columbus.
"I was told I was obese and I needed to lose weight and start exercising, and I would start feeling better," she said.
Thinking the specialist was right, "I would try to exercise. I would have episodes of passing out and terrible fatigue," she added.
A Cleveland cardiologist, who treated Asselin-Hayes for three years, also declared her "fat" and in need of more exercise.
In 2008, a new HP specialist in Cleveland finally did the necessary tests and the right heart catheterization to give her a proper diagnosis.
"It was a damn comedy of errors, but it isn't very funny," Asselin-Hayes said.
"It's difficult to diagnosis, it's sneaky," said Dr. Ed Tappel, D.O., a Marietta family practitioner who is Asselin-Hayes' primary care physician.
Other medical conditions like asthma, other lung diseases and heart failure are more common and "look like pulmonary hypertension," he added.
The tests for confirming a diagnosis of pulmonary hypertension are complex and include a right heart catheterization, Tappel said.
"It requires specialized equipment, training and facilities," he added.
PH symptoms include shortness of breath, fatigue, chest pain, dizziness, fainting and edema, according to phassociation.org.
Both Asselin-Hayes and Mayhood-Paskawych take medications that help slow the disease's progression but there is no cure-except a heart and/or lung transplant.
"The medicines improve our life, they buy us time," Asselin-Hayes said. "Hopefully we last until the next medicine that can buy us time."
During the time for making a correct PH diagnosis both Mayhood-Paskawych and Asselin-Hayes suffered huge personal losses.
"I lost my job, my savings, my retirement, everything," Asselin-Hayes said. After filing for disability in 2005, she did not receive it until 2008.
In April, Mayhood-Paskawych lost his job as a shipping, receiving and warehouse manager for a local manufacturer.
"This disease has bankrupted me," he said. His medicine bill is a whopping $17,000 per month, for which he receives some help from pharmaceutical companies and other organizations, he added.
In addition to the difficulty in diagnosing PH, it is often hard for people to believe someone with the disease is sick because they look healthy.
"I'm six feet tall. I weigh 180 pounds. I quit smoking years ago," Mayhood-Paskawych said. "Some people look at me as a healthy person and say 'Well, you're not sick at all."
Asselin-Hayes was in agreement.
"We don't look sick," she said. "I've had people tell me that I'm lazy, and that if I just tried a little harder I could go back to work."
Both Mayhood-Paskawych and Asselin-Hayes are working to raise awareness of PH.
"I'm trying to find ways to organize fundraisers to raise money for research into the triggering factors and causes for this disorder," said Mayhood-Paskawych.
Asselin-Hayes recommended those who suspect their symptoms may be PH should see a PH specialist.
ask to be referred to a PH specialist.