New therapies extend life for pulmonary hypertension patients

Jay FitzOur Town Health

At 7 years old, experiencing the flurry of activity after a family member suddenly loses consciousness can be frightening. At 13 years old, learning to put sterilized water in an oxygen tank is an unusual skill. At any age, seeing pale skin and blue lips on a loved one can be unsettling.

“I had no idea what pulmonary hypertension was, but I knew I didn’t want it,” says Jimmy Grea. By the time he was 20, not one, not two, but three of his close family members had died from the incurable disorder.

Pulmonary hypertension happens when blood vessels to the lungs grow too much muscle, and the circulation of blood to the lungs is compromised. No one knows what causes it, but the result is high blood pressure in the lungs, which leads to heart failure. There was a time when physicians could only treat the symptoms and help the patient be as comfortable as possible. When Grea received the dreaded diagnosis at the age of 39, he was certain his own life was coming to a painful end.

He had only known pulmonary hypertension as a death sentence, a cruel thief, stealing breath and life from people he cared about. He was devastated.

That was almost 10 years ago, and today Grea is still embracing life thanks to treatment options that renew his hope every single day.

Life and Hope

“Cutting-edge therapies are available to people in East Tennessee and there are new therapies being developed every day,” says Fort Sanders Regional physician John Swisher MD, director of the East Tennessee Pulmonary Hypertension Center and pulmonologist with StatCare Pulmonary Consultants. “There are currently 14 FDA-approved therapies specifically to treat pulmonary hypertension.”

Fort Sanders Regional Medical Center is known as a Pulmonary Hypertension Association Center for Comprehensive Care. This means the hospital offers special expertise in pulmonary hypertension and connects patients with the highest level of care – the kind of care patients used to have to drive hours out of town to receive.

Crystal Collins, StatCare Pulmonary Consultants Biologic Coordinator and East Tennessee Pulmonary Hypertension Center clinical nurse specialist, says it’s rewarding to see the dramatic change in patients who are diagnosed early enough to see the greatest benefit from these therapies.

“At first they come in and they can’t walk six minutes on the treadmill,” Collins says. “Then you go through this long process and at the end, they’re walking in and they can walk two miles a day. Sometimes they don’t need oxygen anymore. It’s been amazing.”

A Pathway to Hope

During the month between Grea’s diagnosis and his first appointment with the specialist nearly a decade ago, he spent hours online trying to learn as much as he could. His web search led him to the Pulmonary Hypertension Association, where he talked to a woman in her 70s who had been living with the disease for a startling 20 years.

Today, Grea is the leader of the local Center’s support group. He’s living life to the fullest and he’s now sharing that same hope with newer patients.

“I would just encourage anyone who’s been newly diagnosed to maintain a positive outlook,” he says. “This can be very manageable. It is not over!”

Since being diagnosed in 2012, Grea has enjoyed nearly a decade of birthday parties, Christmas celebrations, summer vacations, neighborhood fun on Halloween and counting his blessings at Thanksgiving. Best of all, Grea has had 10 years of sharing life with people he loves, including the surviving members of his family and his life partner. When he tells his story, it overwhelms him sometimes.

“I thought, you know, that I had one, maybe two years,” Grea says. “It’s just so wild to look back on that now and think about how convinced I was that it was over. But once I came to the realization that this was not a death sentence by any means, once I believed that, it totally changed for me.”

Dr. Swisher says early diagnosis is critical for successful treatment. If you experience symptoms such as sudden fatigue and shortness of breath, see your doctor. If you have questions about treatment, call 865-444-4594.

Information provided by Covenant Health

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