By Ben Mattlin
Every year some 24,000 Americans die from influenza infection, according to the U.S. Centers for Disease Control and Prevention. Last year the swine flu caused an additional 12,000 fatalities — fewer than initially expected. For many people with disabilities, the risks are higher than average. People with compromised immune and/or respiratory systems are more likely to suffer the most severe symptoms, especially secondary infections like bronchitis and pneumonia — infections that could kill. Recognizing these dangers and taking adequate precautions can make all the difference.
Pneumonia and Other Complications
“The thought of contracting the flu really scares me,” admits Debbie Hamilton, 51, a registered nurse and C4 incomplete quad who lives in Powell, Wyo. For her, the nightmare involves not only the flu, which is bad enough, but the potential for bronchitis and pneumonia, which can easily be set off by the flu or even a bad cold. “Since my accident, I only have about a quarter of my lung capacity,” Hamilton says. “I have a terrible time coughing and clearing my lungs.”
If you can’t clear your lungs, they can become a breeding ground for nasty viruses and bacteria. What’s worse, if your body’s germ fighters are already exhausted from battling the flu, they are less able to fend off complications. “Depending upon the disability, some people are more likely to develop complications that may require additional medical assistance,” says Dr. Bill Lewis, senior vice president of medical operations at Concentra, an independent health and wellness concern in Phoenix and an expert in health-care delivery systems. “Left untreated, influenza can develop into pneumonia, bronchitis, sinus infections and ear infections.”
Even if you’re lucky enough to avoid complications, you still might suffer more from the flu than others. “People who have difficulty breathing — ventilator users and individuals with asthma and other respiratory conditions — tend to require extra medical attention,” Lewis says.
What to Do
“I have enough health-related concerns without worrying about coping with the flu,” says Lex Frieden, 61, a C5 quad and a professor at Baylor College of Medicine and the University of Texas Health Science Center, and a director at Independent Living Research Utilization, a disability-rights think tank in Houston. Frieden is a firm believer in avoiding preventable illnesses. “About the easiest thing to do consistent with that philosophy is get a flu vaccination each year,” he says.
The past couple of years, however, flu shots were in short supply, even for those of us identified as a priority because of a pre-existing condition. Frieden insists it’s important to keep looking, even if it takes many weeks and many phone calls. Last year, he says, “I contacted physicians’ offices, public health clinics, occupational health clinics at the universities with which I am affiliated, county and state health departments, and major drugstore chains.” He finally found a hospital with a supply for its staff that had some left over.
Frieden says since he started getting flu shots as early as possible every fall, he has not contracted the bug.
Flu shot supplies are supposed to be plentiful this year, but still, you must stay vigilant and assertive. “No one is going to call you,” says Amy Jo Stevens, 45, a beauty consultant in Spruce, Mich., who has limb-girdle muscular dystrophy. “You have to be your own health advocate.”
Some disability-specific organizations such as the National Multiple Sclerosis Society and the Muscular Dystrophy Association can help you locate and even pay for flu shots. If you’re a member, call the local office or check the website. And don’t be shy. “Make people aware of your situation. Follow up each week until you are covered,” Stevens says.
Pneumonia Shots, Avoiding Sick People, Anitvirals
Stevens hasn’t had the flu or even a bad cold in several years, which she attributes to annual flu shots and pneumonia shots every five years (as directed by a doctor). She also takes other precautions. “Make your family and friends aware that you must avoid getting any type of flu,” she says. “Avoid being around anyone who is sick. We cannot take any chances because what is [just] a cold or flu to others can be fatal to us.”
And don’t forget, your personal care assistants can spread viruses too. They should get vaccinated as well, even if you have to pay for it. “I can’t force my help to get the flu shot, but I recommend it to them,” says Hamilton, the ex-RN. “I also make sure I keep antibacterial soap in the bathrooms and have my caregivers wash their hands frequently.”
Stevens notes that it’s a good idea to have a bottle of hand sanitizer, too, for when soap and water aren’t available.
If your aides do get sick, and you don’t have adequate backup, ask them to wear masks. Or put one on yourself. “Paper masks are appropriate,” says Hamilton, who plans to have a box on hand for the current flu season.
Another medicine in the flu-fighting arsenal is the antiviral Tamiflu. “Tamiflu can be a preventative measure and an acceptable treatment of flu,” says Flora Macatangay, an RN and director of clinical assessment standards and practices at Trinity Senior Living Communities, an assisted-living facility in Livonia, Mich. Available only by prescription, Tamiflu can stop the virus from making you sick. “It can be taken by anyone who has been exposed or thinks they may be exposed to the flu, [and it] helps stop the flu virus from spreading inside the body.”
Tamiflu should be started at the first sign of symptoms or after exposure to the virus. Usually it’s taken for five days, under doctor supervision [see "The 2009 Swine Flu" below].
Another antiviral is the inhaler Relenza. Recent reports, however, indicate it can be harmful to people with asthma or other respiratory conditions.
Nebulizers and OTC Expectorants
Staying on top of symptoms can limit their duration and severity. “For most people the flu lasts a couple of weeks, but for me it lasted five or six weeks,” says Billy Kimberlin, 46, a U.S. Army retiree and C3 incomplete quad in Tampa, Fla., referring to the flu he caught four years ago. “My doctor put me on a nebulizer in conjunction with a portable ventilator.”
A nebulizer turns medicine into a fine mist you inhale. If used with a ventilator, the mist is pumped into your lungs with little or no effort. Kimberlin pours into his machine a combination of albuterol and ipratropium — powerful bronchial dilators that open constricted lungs to make breathing easier and help loosen secretions to facilitate effective coughing.
Kimberlin did these breathing treatments four or five times a day. After he got better, he was supposed to continue them once or twice daily as a preventative. Except he didn’t, and so a year later he caught the flu again. “The doctors got on me about that,” he says. “So since then I really have been good. I’ve been religious about doing the prophylactic breathing treatments for the past three years, and I’ve had no problems ever since.” If he starts to feel even a little cold coming on, Kimberlin increases the treatments.
“The other thing I do if I feel fluid building up in my lungs, which happens occasionally, is take Robitussin,” he adds. “It helps me extract [phlegm] so I don’t get pneumonia.” Plain Robitussin is best. Labeled for chest congestion, it’s a liquid form of the expectorant guaifenesin — as opposed to Robitussin DM, which contains dextromethorphan, a cough suppressant that can inhibit the coughing that’s needed to expel mucous.
Kimberlin starts with a small dose, but if he’s still having difficulty clearing his chest, he increases it. If the bitter-tasting liquid is too difficult to swallow, another option is Mucinex tablets, another form of guaifenesin.
Macatangay notes further that if you start coughing, sneezing, feeling a sore throat or having other flu-like symptoms, you should “stay home for at least 24 hours after your fever is gone.” If all else fails, the old standards still apply: drink lots of fluids, take vitamin C or eat fruits rich in vitamin C, and take it easy. “Simple bed rest is the number-one treatment,” she says.