Supporting each other through pulmonary hypertension
For Cathy MacLeod, a diagnosis of pulmonary hypertension was terrifying.
“They said the average life span is three to five years. Then they said, ‘but with medication, you can live longer.’ But the only thing I heard was three to five years,” she said.
That was five and a half years ago.
MacLeod, a Falmouth resident, has since become a source of information and comfort for other Cape residents with pulmonary hypertension (PH). She founded the Cape Cod Pulmonary Hypertension Support Group, which meets monthly in Falmouth and is hosting a special forum on Dec. 3 in Centerville.
The forum will begin at 1-3 p.m. at the Centerville Fire Station, 1875 Route 28, Centerville. An elevator is available to get to the second-floor meeting room.
Special guest speaker Sandra Lombardi, RN, has 15 years of experience working with PH patients in the San Diego area, including work on clinical trials.
“She will speak on the newest medications, and will explain to caregivers and people who are newly diagnosed how to deal with PH and what to expect,” MacLeod said.
The support group has proved invaluable for members, she said.
“My doctor can tell me the medical facts, but he’s not sitting in my chair,” she said. “It’s nice to talk to someone else who has it.”
What Is Pulmonary Hypertension?
“Pulmonary hypertension is a constellation of diseases,” said Paul Evans, MD, a specialist in pulmonary medicine at Cape Cod Hospital.
“The short version is that it’s a disease where there is high blood pressure – that’s the hypertension part – in the blood vessels that go from the right side of your heart into your lungs.” This forces the right side of the heart to work harder to keep blood moving.
“The most common symptom is shortness of breath, especially with exertion, going uphill and things like that,” he said.
Other symptoms can include chest pain or chest pressure, fainting spells, fatigue, swelling in the legs, and signs of low oxygen level, such as blue finger tips or blue lips.
“The day-to-day symptoms are that you’re very tired,” said MacLeod. “You can wake up in the morning and think, I’m going to do this and that, and by noon you’re not doing anything.
“We call that a PH day; when you get up and you get no further than your couch – a no-energy day. That’s a very common symptom because our oxygen level is lower than for a normal person.”
In some cases, a specific cause for PH can be found, including left heart disease (such as congestive heart failure), lung disease (including chronic obstructive pulmonary disease, also known as COPD, or emphysema) or blood clots. Sometimes it’s idiopathic, meaning there’s no identifiable cause, although some people have a genetic predisposition, Dr. Evans said.
“It’s something where you just get it, like rheumatoid arthritis,” he said. “You develop it, and it’s not your fault.”
Screening and Treatment
An echocardiogram and breathing tests are among the non-invasive tests that can be done to screen for PH, but the definitive test is a right heart catheterization (sometimes called a cardiac catheterization).
Since there is no cure for PH (except for cases that lead to a lung transplant), treatments focus on dealing with the underlying causes, Dr. Evans said.
“If you have a leaky valve on the left, we fix the valve,” he said. “If you have sleep apnea, get that treated.”
Drugs like the erectile dysfunction drug Viagra, which affects intravenous flow, can be used to relieve the symptoms of PH, while patients with blood clots get a blood thinner, like Coumadin. MacLeod initially used an oxygen tank around the clock, but now uses one only while sleeping.
As far as MacLeod is concerned, joining a support group is an essential part of treatment for PH.
“At the support group meetings, we share anything new that we know and we support each other. It’s nice to know that everyone knows what you’re talking about when you say, ‘I was too tired to do that.’”
Dr. Evans agreed.
“Educating people leads to better outcomes with almost any disease,” he said. “They learn about the best therapies, the latest treatments. It keeps the dialogue going between them and their physician.”
To learn more about the Cape Cod Pulmonary Hypertension Support Group, call Cathy MacLeod at 508-273-3078.