Spring 1998 ~ Newsletter
Resistance To Medicine
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Patient and Parent Perspectives
A Question and Answer Session
Q. How do I handle resistance to antibiotics?- by a 31 year old PWCFI guess that is not something that I consciously consider in my daily battle, yet that ultimately becomes the question. What drugs to use and how effective will they be? This subject, just as any other obstacle with CF, can't be a place to dwell. Only now, at 31, am I realizing the true importance of taking maximum care of myself daily. You may wonder how that would effect resistance, but it most certainly does. In my late teens and early 20's, I did not place much importance on daily care - resulting in often hospitalizations that in turn resulted in a higher resistance to antibiotics. Approximately four years ago, Cepacia was found in my sputum. Since this finding, I have become more diligent in my daily care. Taking better care of myself continually has proven difficult because I am married and have two children, but better care has resulted in fewer hospitalizations which has caused my resistance levels to fall!Q. What feelings come with getting a resistant bug?- by a 31 year old PWCFWhat are some of the emotions that I can expect to experience if I find out that I have a multi-resistant organism? There are many emotions you can expect to experience when faced with this. One is curiosity. You may be interested in finding out all that you can about the organism, where it came from, how you got it, what effect it will have, etc. Another emotion that you may experience might be frustration. You may be frustrated and feel that even your best efforts aren't good enough to keep you healthy. Fear is yet another one. You may be worried and fear how the organism will affect you and your family in the future. While most of these emotions are negative, it is important that you keep a positive attitude and channel these emotions towards keeping yourself as healthy as possible.
Q. How do we get resistant bacteria and what are some ways to avoid infection?- by a parent of a 3 year old with CFOne of the most important jobs I have as a parent of a child with CF is to stay educated with all aspects of the disease. Doing this, I can make sound decisions with his care. Multi-resistant bacteria can be potentially dangerous for anyone with CF, so I have tried to educate myself on ways to protect my child. Multi-resistant bacteria can be caught through various ways in the environment and via person to person (especially now with the over usage of antibiotics). Although environmentally it may be impossible to avoid, there are precautions that a parent can take. For example, during my child's first hospital stay, I requested a room away from others with more serious infections, which my child currently did not have. During his stay in the hospital, he wore a mask around other CF patients. Some multi-resistant bacteria are spread easily between CF patients, and all precautions should be taken. I also do things like clean his nebulizer daily and never allow my child to get in hot tubs or indoor heated pools. Nor do we use humidifiers (all of these -- if not cleaned thoroughly -- can harbor dangerous bacteria). Washing hands at home is another priority. As a parent, I feel as though I have a responsibility to teach my child to take care of himself, by taking necessary precautions, and I hope that this will stay a priority with him as he becomes an adult.Q. What would I do if the doctor told me that my son had another bacterial infection?- by the mother of a 19 year old with CF
This is the easiest way for me to answer this after much thought about it. Several years ago, my son was being treated at another hospital. While he was hospitalized for a routine admission, he became very sick. After several months we were told that he had another bacterial infection. As it turned out, at least three other patients had this same infection. Our son had played with one of them several times. I will always believe that something as little as wearing a mask and washing his hands after playing, which was not instructed at the time, could have prevented him from getting the infection at that time. I know it is impossible to keep the kids from playing together, but I truly believe that taking extra precautions help to prevent the spread of infections.