Keeping Yourself Healthy

by Jennifer A. Block

Summer 1998 

Editor’s Note: Jennifer Block is a freelance writer living in San Francisco. Her fiancÚ, Dave Martin, has cystic fibrosis.

It’s your responsibility to take control of your health, and incorporate as many low-tech, cost-effective ways to keep yourself fit. "We are often so focused on the medical aspects of the disease," says Linda Greene, R.N., Center Nurse at the University of California at San Diego’s CF Center, "that we don’t say enough about how important diet and exercise are."

Create your own balance of medication, diet, and exercise, and learn how to alter your routine to provide the best care. Here, three adults with CF and one parent of a child with CF share their health regimens. Note how their plans are fluid enough to change with the seasons, yet consistently maintain good health. Choose a diet and exercise plan that fits in with your lifestyle and makes you feel good.

Making the Most of Your Diet
Because most people with CF have digestive problems, receiving the proper nutrition and combating malabsorption (when undigested food passes out of the body) are crucial. Baylor College of Medicine in Houston, Texas, advocates a high-calorie, high-protein diet so people with CF can store up energy for times of infection, stay physically active, and compensate for lost nutrients.1 But this recipe isn’t for everyone.

Nurse Greene suggests a high-calorie, high-fat diet. "Remember, proteins are harder to digest than carbohydrates," she points out. And while candy bars have lots of calories, Greene advises against making them a big part of your diet. "Don’t concentrate on sweets," she says. "Go for natural sugars from fruit and juice."

Brian K. Eddy, a 38-year-old with CF, of Cupertino, California, disagrees. "I’m very careful to maintain a low-fat diet, which I think is the right approach for an active adult. I also occasionally drink protein shakes and take supplements."

Nebraskan Michelle Rayburn, who also has CF, eats whatever she wants. "I really don’t have any problems with digesting my food. Pizza is the only thing that gives me trouble, so I take more enzymes."

Valerie M. Hudson of Provo, Utah, lets her 17-month-old son with CF nurse whenever he wants. "We also feed Johnny two cups of a homemade concoction and all the solid, easily digestible food he wants. Breast milk, of course, is very easily digestible and contains its own lipase." [Editor’s Note: this does not mean you don’t still need to take enzymes.]

Get in Tune to Your Body’s Signs and Signals
Rayburn always checks her fingernails. "If they have a bluish tint, I’m not getting enough oxygen due to an infection or asthma. I know then that maybe I need to get an extra does of my inhaler,"she says.

Barbara Palys has CF and feels hungry and dizzy when she has low-sugar reactions.

"I also know that when I crave avocados, I am probably low in vitamin E," says the 41-year-old Palys. "Sashimi (raw fish) is great for a low-fat protein pick-up."

Many take vitamins A, D, E, and K along with their multivitamins. Hudson gives her son extra vitamin B-complex, calcium, boron, selenium, and papaya enzymes. Vitamins are easier to absorb when taken with enzymes at meals, Baylor College of Medicine advises.

Summer Fun
With Summer in full bloom, it’s time to step up your physical activities. Greene stresses, "Regular aerobic activity is very important because it improves chest muscles, endurance, appetite, and overall sense of well being." Exercise also strengthens the immune system against respiratory infections, reduces susceptibility to depression, improves the ability to cope with stress, and decreases the risk of osteoporosis and fracture.

"Exercise has most definitely helped my lung function!" exclaims Rayburn. "I country or swing dance every weekend, which is quite a workout. I also go for walks." Palys walks 10 to 15 miles a week, while Eddy lifts weights five times a week.

Studies show that people with CF do not feel as thirsty as they should when their bodies are losing fluids, so it is important to always drink water. In these hot summer months, watch your salt intake carefully. Symptoms of salt loss are fatigue, weakness, fever, abdominal pain, vomiting, dehydration, and muscle pain.

Greene says, "I tell my patients to eat salty foods in the summer, supplement their meals with salt, and drink fluids like Gatorade to replenish minerals and electrolytes."

Hudson puts salt on her finger and offers it to her baby. "If he wants it, he licks my finger," she says. She also puts salt in his special daily shake.

Palys explains her summer routine:"I limit physical exercise to the early morning or late afternoon hours when it is cooler. I carefully read the label of my antibiotics in case exposure to the sun is a no-no. I don’t take salt supplements, but do make sure my diet contains enough salt. I rarely encounter dehydration because I am constantly sipping a drink."

As you age, you need to adjust your health regimen
"I can’t really say that my nutrition requirements have changed as I’ve gotten older," says the 25-year-old Rayburn. "I eat like I always have, but I do take more enzymes than I used to. I try to eat high-calorie foods. I’m more active than I used to be because I take much better care of myself now."

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