Breathing Deeply: My Life With Cystic Fibrosis

A few years back I was part of a team that did some research to determine whether there was a connection between the frequency and severity of asthma attack and activity level. Part of my job was to assess the study subjects' personal environments (i.e. where they slept, played, lived, etc. ) I was shocked, dismayed and angered by the living conditions of some of the subjects we studied. All socioeconomic variables aside, I observed that one area in particular was dramatically responsible in determining the quality of life for those asthmatics. In a word: compliance.

I'm the first to admit that I am far from an image of perfection when it comes to compliance with my treatment regimen. This was especially true when I was younger. Now that I'm older, I see the extremely vital importance of taking my medications, doing my treatments, and obeying the doctors' orders. I'd like to spend some time pointing out the areas in which I'm sure many of us CFers struggle most, and why compliance is so important.

A commonly overlooked aspect of keeping our health under control involves CLEANING OUR NEBULIZER CUPS. The first place that bacteria likes to linger is in warm, moist places. After your treatment, thoroughly rinse and dry your setup. You don't need to try to cram a paper towel or piece of gauze into that tiny cup to dry it after rinsing. I've found that a hair-dryer on a very low setting, held approximately 8-12 inches from the cup will dry it quite well.

Along those same lines, don't forget to change your nebulizer's FILTER as needed. You're not doing yourself any favors to be sucking in air that has passed through a filthy filter. As an air quality scientist I can tell you that the particles in the air that do the most damage to our lungs are the tiniest ones.

Another big problem is that many of us give up on medications that we don't think are benefiting us. TAKE ALL MEDICATION on time, as prescribed. If a medication truly isn't helping you, then talk about it with your doctor. Don't make an arbitrary decision about it on your own. This is one of the things I struggle with the most. My scientific background helps me in a lot of way when it comes to dealing with CF, but on the other hand, there are times when I don't take a doctor's advice as seriously as I should.

The biggest problem that occurs when we don't comply with doctor's order with regard to medication is that we run the risk of creating a bigger problem that cannot be undone easily. This is especially true for those who have to take digestive enzymes. When we don't take them faithfully and frequently, we are robbing our bodies of the nutrients they need to function well. What may seem like an insignificant weightloss may really be malnourishment, which leads to a decreased ability to fight infection, which allows the infectious "bugs" to be stronger and as a result, it takes a much longer treatment period to wipe out the infection. Tell yourself that the 2 minutes it takes to assess your meal and figure out the appropriate number of enzymes to take with it is a good trade compared to 14-28 days of antibiotics to treat a nasty infection.

I know that despite our best efforts to ward off possible infection, sometimes our bodies have plans of their own. However, I'm a firm believer that an ounce of prevention is worth a pound of cure, especially when it comes to keeping my living environment free from potential health hazards. In all honesty, I think that the effort exerted in order to comply is well worth it, especially when it saves me the trouble of dealing with an infection.