Breathing Deeply: My Life With Cystic Fibrosis

Fun? There is no fun.


--Klaus Kinski








In addition to keeping track of the number of unique visitors to this blog, my Statcounter also stores information about how my visitors find this site, which pages they read and which ones they don't. Statcounter's built-in capabilities also enable me to perform a keyword analysis, which I use in determining what sort of information about CF people are searching for when they type a few select words or phrases into their preferred search engine.

The most popular keyword phrase lately is the following " fun facts about cystic fibrosis." I'm guessing that somewhere in the world there is a classroom of students who have been given the task of writing a report about a disease they've never even heard of. To them, uncovering information about cystic fibrosis is like a treasure hunt--they hope to find a nugget of something clever that they can use to make an incurable disease seem like just another entry in the encyclopedia.

If you are searching for "fun facts" about cystic fibrosis, I'm sorry to disappoint you, but there really isn't anything "fun" about this disease. It's plenty interesting though, that's for sure. Here are a few highlights of the more interesting aspects of it:

• some people with CF have ravenous appetites but never seem to gain weight
• CFers who are pancreatic insufficient have to take dozens of pills just to absorb their food properly
• CF is progressive--it gets worse as time goes by
• CFers are often lonely because we are not permitted to be around each other thanks to cross-infection issues
  
• People with CF have to cough regularly just to breathe (and this is when we're feeling well!)
• Hospitalizations are called "tune ups", and may involve weeks of intravenous antibiotics
• Some of us have truly awful smelling gas--it's embarrassing but we can't help it
• We need more than 4000 calories a day
• We hate it when people comment on how skinny we are
• CF's presentation is widely variable from person to person, making the disease difficult even for our doctors to understand
• Even with a dozens medications being taken on a daily basis, we still get sick
  

If you'd like to know more details about what is involved in my daily management of cystic fibrosis, I encourage you to visit my article "CF Doesn't Sleep" which was recently published online by Associated Content.