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Cystic Fibrosis and Cross-infection

By Meg Marinis, Director of Medical Research | Feb 24th, 2011
It's extremely difficult spending your entire life suffering from a chronic inherited disease. Like Julia said, you're always referred to as the "patient," spending a greater part of your life in waiting rooms and hospitals, constantly having blood drawn and being asked how you're feeling. One source of comfort for patients has always been each other – those that share their disease, their symptoms, and the rules they must follow. They can swap stories, treatments, and advice on how to cope with living with their disease.

Unfortunately, Cystic Fibrosis patients can only swap dangerous infections.

First, let's refresh ourselves on CF.

Cystic Fibrosis is an inherited disorder that primarily attacks the lungs and digestive system. Caused by a defective gene and its protein, the disease causes the body to produce extremely thick mucus that can clog the lungs and turn into life-threatening respiratory infections. Along with the lungs, the disease affects the body's ability to break down and absorb food; it can inhibit the vital functions of natural enzymes and obstruct the pancreas in its role of digestion. Patients do vary in the severity of their symptoms throughout their life, but typical problems include:

- Frequent lung infections
- Persistent coughing, frequently with phlegm
- Wheezing or shortness of breath
- Very salty-tasting skin
- Poor growth/weight gain in spite of a good appetite
- Frequent greasy, bulky stools or difficulty in bowel movements

According to the Cystic Fibrosis Foundation, the disease approximately affects 70,000 people worldwide, and an estimated 1,000 new cases are diagnosed annually.

But treatment has come a long way, right?

Absolutely! Back in the 1950s, many children with CF did not survive to finish elementary school. Now, due to advances in medicine and technology, these patients may have full lives into their 30s, 40s, and older. No overall cure exists for CF, but many treatments help prevent and reduce the effects of the disease.

For example, to treat their lung problems, patients usually maintain a regimen of medications, chest physical therapy (CPT), and exercise. Doctors may prescribe antibiotics, anti-inflammatories, and bronchodilators (the inhalers people typically use) to reduce swelling, to thin and loosen mucus, and prevent chronic infections. CPT, also known as chest clapping or percussion, helps to loosen the mucus in the lungs in order to cough it up. It involves physically and repeatedly pounding the chest and back with your hands or a device. Quite uncomfortable, patients find that sitting down or lying on one's stomach with the head down may aid the process. And exercise, besides improving one's overall health, also increases the ability to cough up mucus by causing the body to breathe harder.

Doctors also have suggestions to manage CF patients' digestive difficulties such as nutritional therapy; patients should be instructed on a plan for a well-balanced diet. CF patients may also require surgery at one point to remove an intestinal blockage.

Now, what's this scary business about "cross-infection"?

People cannot "catch" Cystic Fibrosis when a patient coughs on them. But if a CF patient coughs on another CF patient? It can cause all sorts of problems. CF patients carry and attract different forms of bacteria that love to hang out and fester in their lungs that non-CF patients do not carry.

If cross-infection occurs (if CF patients swap bacteria), it can rarely be eradicated from the patient's lungs because many of these bugs are antibiotic-resistant. And, chronic lung infection contributes to lung disease and damage – the primary cause of morbidity and early death in CF patients. Another important issue to remember is the immediacy of inoculation with these organisms; even if a CF patient received the all-clear at the doctor's office, this patient could pick up a strain of bacteria the very next day.

How is cross-infection prevented?

In order to protect CF patients from cross-infection, organizations instituted guidelines for social settings, hospitalized patients, and outpatient situations. The social setting rules include:

- Close personal contact is discouraged among patients (such as sharing rooms, sharing medical equipment, sharing cutlery, and kissing/intimate contact). Three feet of space between patients is usually recommended.
- Do not share toothbrushes or towels. Do not share drink cans, cups, or bottles. Do not share rooms with other people with CF if staying overnight.
- Patients should not ride in cars with other patients.
- Fitness classes and spas are discouraged if more than one CF patient attends.

For hospitalized patients:

- CF patients should be assigned to a private room with a sign on the door that says "Infection Precautions."
- CF patients may only visit public areas in a hospital (such as the cafeteria) if their doctor approves it.
- CF patients should be educated in frequent hand washing using sinks in their own rooms.
- Certain rooms (lounges, playrooms, pulmonary function laboratory) should only allow one CF patient in at a time. Equipment, computers, or toys handled by CF patients should be disinfected between patient use.

For outpatient situations:

- CF patients attending an appointment should be brought to an exam room immediately following check-in.
- Schedule and manage patients to minimize time in a common waiting area.
- Discourage hand shakes and physical contact between CF patients to prevent direct and indirect contact with secretions.
- Instruct patients to cough into a tissue and immediately discard tissue into a covered, no-touch receptacle or toilet.

What's the latest news on cross-infection?

These guidelines were created to protect CF patients, but many people feel the rules could potentially harm these patients in the end. The question is if it's worth it to completely isolate these patients from a social connection to reduce the risk of infection. Many people are in the process of pushing these organizations to re-examine the guidelines because of the psychological consequences. Some patients believe the shared experiences of love, compassion, and camaraderie among each other can be just as healing.

For more information on Cystic Fibrosis, please visit:

http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html

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