When Colleen Brunetti was diagnosed with pulmonary arterial hypertension (PAH), she thought there was nothing she could do.
Today, nearly a decade later, there's not a lot Brunetti can't or doesn't do. She's a holistic health coach, author, mother of two, wife, and fundraiser, and she manages to fit in a Zumba class now and then.
"My quality of life [is] very good," she says. "But it takes a lot of work to keep it that way."
There is no cure for PAH, but treatments and healthy habits can make living with the condition much easier. And a happy life has another benefit.
"If you have better quality of life, you're going to live longer," says Stephen Mathai, MD, assistant professor of medicine at Johns Hopkins University School of Medicine.
Eat Well -- Without Extra Salt and Fluids
People with PAH tend to retain water. So the first rule of a healthy diet is to keep your body from holding too much fluid.
"If you continue to eat salt and drink excess water, essentially the body cannot get rid of that excess," says Vinicio A. de Jesus Perez, MD, who heads the Care for All program of the Pulmonary Hypertension Association. "The fluid accumulates in the legs, abdomen, and [patients] become extremely uncomfortable to the point where they cannot move or exercise."
Don't go above 2,000 milligrams of salt and about 8 cups of fluid a day. It helps to stay away from foods that have a lot of sodium, like chips, lunchmeat, canned foods, frozen foods, and fast food -- “anything that comes in a Styrofoam container,” Mathai says.
It’s a good idea to follow the American Heart Association’s diet guidelines -- eat lots of fruits and vegetables, whole grains, lean meats and fish, and avoid fat and added sugar.
Some people with PAH, including Brunetti, find that a vegetarian or vegan diet makes them feel better. And a healthy eating plan can be a good foundation for other smart changes.
"I always recommend that people start with nutrition,” Brunetti says. “That’s three to five times a day you can do something good for your body.”
Get Moving, but No Heavy Lifting
Not everyone with PAH can manage an hour-long Zumba class, but just about everyone can benefit from some form of light exercise.
Formal pulmonary rehab programs are the best route. They help you build stamina and manage your breathing as you work on exercising. But if you can't swing it, talk to your doctor about other activities, such as walking or swimming. There's even a yoga program for people with pulmonary hypertension.
Perez says people who get the right kind of exercise can walk more, breathe better, and feel better about how they’re handling their PAH. "They feel more hopeful and feel they are in better control of [the] disease."
Muscle strengthening is important, too, but avoid lifting any weights (or any object) heavier than 15 pounds.
"It can cause strain on the heart," Mathai says.
Rest, Sleep, Repeat
Trouble sleeping isn't good for anybody, and it’s a common problem for people with PAH. And if you have another condition, like sleep apnea, that keeps you from breathing well when you’re asleep, your PAH can get worse.
"If there is even mild sleep-disordered breathing, it can have a significant impact," Mathai says.
So let your doctor know if you have trouble getting good shut-eye. They can see if you have sleep apnea or another problem that you can treat for better ZZZs.
Just as important is learning to pace yourself to save up your energy. And be flexible about what you can and can't do at different times. When Brunetti doesn't feel up to Zumba, she goes for a gentler workout instead -- a combination of yoga and Pilates.
Get Support
For Brunetti, support and connections with others have been the cornerstones of her life with PAH.
"I think it's as important as the medication is," she says. "If I couldn't talk to other patients in the low times and if I didn't have a platform to fight back on, I'd be much sicker."
You can reach out through a traditional in-person support group, an online platform, or by volunteering in your community.
All of Brunetti's efforts to improve her life, along with medication management, recently led to one big, joyous change: "We were able to adopt a baby girl last year," she says.