Managing Your Chronic Illness

Why it’s important to be an active member of your care team

A Program for People With Complex Illness

People with late-stage illnesses like recurrent cancer and heart or kidney failure not only have symptoms that are hard to manage, they also face challenging emotional and family issues as they make choices about their health care. The new OACIS* Services program at Lehigh Valley Hospital and Health Network is designed to guide them on this journey physically, emotionally and spiritually.

* Optimizing Advanced Complex Illness Support

A diagnosis of heart disease, diabetes or emphysema can leave you feeling powerless. But by taking an active role in your care, you can gain control and help prevent future complications. “The key is self-managing your illness,” says pulmonologist Daniel Ray, M.D., of Lehigh Valley Hospital and Health Network. “It’s important to think of yourself as a member of the care team.” Here’s how:

» Educate yourself. Read up on your condition. “Ask your doctor for a longer appointment to learn about your disease—especially what you can expect five, 10 or 20 years down the road,” says family medicine physician Lou Lukas, M.D., who directs the OACIS program for chronic illness (see box below).

» Pay attention to changes in yourself. Nobody knows your body better than you. If you start sleeping in a recliner because you can’t breathe well in bed, or your shoes don’t fit because your feet are swollen, call your doctor. “Little changes like this signal impending problems,” says nurse practitioner Donna Petruccelli, C.R.N.P. “If we know about them, we can help you manage your care at home and hopefully avoid the emergency room.”

» Understand your medications. Though it sounds simple, many people don’t know why they take certain drugs. “Know the names, dosages and reasons you take them,” Petruccelli says. And check with your doctor before taking any over-the-counter medications, vitamins or herbal remedies because of possible interactions.

» Make sure your doctors talk to each other. It should happen naturally, and often it does. But if you see more than one specialist, ask if they’ve talked to each other about your care. Your primary doctor should be the focal point for such communication. “When caregivers collaborate, the patient’s outcome is better,” Ray says.

» Ask questions. Don’t be concerned about taking too much of your doctor’s or nurse’s time. “I’d rather a patient call too often than not at all,” says OACIS nurse practitioner Gretchen Fitzgerald, C.R.N.P. She suggests keeping a journal of what’s going on with your health, including your questions and concerns. “Bring it to your appointments for the doctor to read,” she says. “Also, get names and numbers of who you should call if you have problems after office hours.”

» Pay attention to what matters most. Sometimes people with serious illness spend so much time on their physical health, they forget vital matters like personal relationships, stress levels and spirituality. Talk to your caregivers if you find you can’t do what’s important to you—for example, if you really value family time but are struggling with a relationship, or you love your church but can’t get a ride there. “We can offer suggestions or resources that can help,” Fitzgerald says.

» Take good care of yourself between doctor visits. Get enough rest. Don’t neglect your flu and pneumonia shots. Eat a healthy, well-balanced diet, and exercise regularly—it keeps you strong and eases stress.

Want to Know More? For help on writing questions to ask your doctor, call 610-402-CARE.

Published from Healthy You Magazine May-June 2007

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