Spring 1998 Newsletter: Dear Doctor. . .

Dear Doctor. . .

LeCrecia Britton, MSN, CRNP

Dr. J.P. Clancy

Dr. Raymond K. Lyrene

Q. What is Cepacia?

Cepacia is a bacteria. The scientific name is Burkholderia Cepacia. It is related to the Pseudomonas bacteria. It is usually resistant to most antibiotics used to treat Pseudomonas. This resistance happens even though the bacteria has never been exposed to another antibiotic.

Q. What does it mean to be resistant to an antibiotic?

Resistance to antibiotics is tested each time a sputum culture is obtained. The bacteria is grown in the lab and then antibiotics are placed on the bacteria. The antibiotics are added at measured doses until the bacteria stops growing. If the measured amount of antibiotic is higher than the amount that can safely be given to humans, then the bacteria is resistant to that antibiotic. A bacteria may be resistant to one of many antibiotics tested.

Q. How do resistant organisms affect CF?

All resistant organisms tend to be more difficult to treat. B. Cepacia is known to decrease the life expectancy of patients with CF. Resistant Psuedomonas Aeruginosa has not been shown to change life expectancy. There are other relatives of Psuedomonas which tend to be resistant, like B. Cepacia, specifically Stenotrophomonas Maltophilia and Alcaligenes Xylosoxidans. However, it is not known if these bacteria decrease life span. It is known that there are increasing reports of patients with A. Xylosoxidans becoming very sick.

Q. How do people with CF get resistant bacteria?

Pseudomonas and B. Cepacia grow in the environment. They can be found in wet places, including hot tubs and swimming pools. They can grow in cut flowers, in some fruits and vegetables. Therefore, people with CF may get catch these bacteria from any number of sources. People with severe CF disease are at high risk for developing resistant bacteria. People who are admitted to the hospital frequently tend to develop resistant bacteria also. The more often a bacteria is exposed to an antibiotic the higher the risk that the bacteria will become resistant to that antibiotic. It is known that non-resistant Pseudomonas and B. Cepacia can be passed between CF patients. It is not known if the same is true for resistant Pseudomonas, S. Maltophilia, and A. Xylosoxidans.

Q. How can people with CF prevent these bacteria from spreading?

Hand washing is the best protection. Avoiding intimate contact with other patients with CF and avoiding areas that may have high numbers of bacteria, such as patient rooms, is also important. Thirdly, consider all people with CF as a source of infection to you or your child. Wearing a mask in the hospital provides some protection because it reminds one to protect themselves through hand washing, etc. Finally - BE INFORMED! Ask for a copy of you or your child's sputum culture and an explanation of the results.

Q. How does our (CF) immune system fight B. Cepacia and other multi-resistant organisms?

The short answer is twofold: (1) the same as any other organism, and (2) not very well. The immune system of CF patients is very similar to people without CF, but recent studies suggest that two copies of a "broken" CF gene slightly weaken it, allowing certain bacteria to gain a foothold in the airways and cause lung symptoms. When the CF gene does not work, the thin layer of fluid that coats the airways has the wrong salt levels present, which in turn is felt to inactivate small molecules ("defensins") in the fluid that normally kill bacteria. When the defensins don't work, the immune system recruits "the second line of defense" (white blood cells) to kill the bacteria. While the white cells are very good at fighting infection, they can also damage the airways, which makes the airways more susceptible to infection. CF patients have very good immune systems, in the sense that they usually keep the infection limited to the airways. But the loss of the defensin function may be the starting place of all CF symptoms.

Multi-resistant organisms (Pseudomonas Aeruginosa, Burkholderia Cepacia, Xanthomonas, etc.) are a problem when they colonize the airways of CF patients, because when they produce increased symptoms, they are harder to treat. "Multi-resistant" means that the bacteria is resistant to all antibiotics in two of the three major antibiotic families. Most Burkholderia Cepacia is resistant to antibiotics by "nature". Furthermore, some Cepacia strains are "extra sticky" which makes them difficult to clear from the airways.

Furthermore, these sticky strains can be passed between patients, especially by sharing equipment, intimate contact (kissing), or sharing space in an enclosed area (car rides, doing chest PT together). Most Pseudomonas that is resistant to antibiotics arises from the family of Pseudomonas that colonized the airway of a CF patient. While it also can be passed between patients, it appears to be less "transmissible" than Cepacia. Importantly, there is good evidence that sputum cultures often lag behind actual airway colonization. In other words, patients will often have multi-resistant organisms in their lungs before we can find them in a sputum culture.

Taking this all together, I think that all CF patients when in the hospital need to be cautious about protecting themselves and other patients from the possible spread of multi-resistant organisms. This includes wearing masks, washing hands, not socializing in each other's rooms, not sharing equipment, keeping an arms length distance from each other, and sticking close to your own room when first hospitalized (when you are coughing a lot). I also think that it is important that CF patients know that they are taking a risk when they have a lot of close social contact outside of the hospital. Until we know more about who is at risk and how to prevent spread, all patients need to use common sense to keep themselves and others well.

Minimize Chance of Acquiring Bacteria Resistant to Antibiotics

By Dr. Raymond K. Lyrene

There are many ways that you as a patient with cystic fibrosis can lessen your chances of acquiring resistant bacteria, but it will take everyone (patients and caretakers) working together to make this happen. Following are a few simple guidelines to help protect yourself and others, and it may add years to your life.

1. Hand Washing. The single most important way to prevent the spread of multi- resistant bacteria is by vigorous hand washing -- after handling your secretions, after coughing, and before approaching another patient with cystic fibrosis.

2. Close contact should be avoided! Close contact with others with cystic fibrosis, such as sharing rooms and car trips together will make the spread of resistant bacteria much more likely.

3. Cystic Fibrosis patients with resistant bacteria are much more likely to spread bacteria during chest physiotherapy or coughing spells.

4. Sharing eating or drinking utensils or personal items like toothbrushes or nebulizers with other cystic fibrosis patients is another way resistant bacteria are spread.

5. Cystic Fibrosis patients should handle their own secretions when possible. Hospital staff should glove when handling secretions. Spitting in the sinks allows Pseudomonas to grow in the moist environment of the sink and to be spread to other patients.

6. Staying at least three feet (at least an arm's length) away from each other helps avoid the spread of bacteria.

7. Resistant bacteria spreads when you congregate in each other's rooms.

8. Develop the habit of wearing a mask when outside of your hospital room. This is especially important if you know that you carry resistant bacteria.

9. Parents should bring toys for their small children for playing in the waiting room of the clinic or when they are in the hospital. Sharing toys can spread resistant bacteria from one child to another.

10. Treat each other as though you have resistant bacteria. Sometimes we don't have culture results until later in the hospitalization. This would avoid unfortunate surprises.

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