Getting old with cystic fibrosis

I am in no way complaining about getting old with cystic fibrosis – I’m the luckiest guy in the world to have survived for so long.  I am, however, complaining about growing old with cf and the ailments that come with aging.

Case in point: Last week’s root canal.

Two weeks ago, I coughed up blood.  The doctors put me on cipro.  The blood went away but I started getting the chills and feeling feverish.  I started wondering if the cipro was working.  Then the tooth pain came, which led to a root canal.  Overall, I feel better, but not 100 percent yet.  Is it the root canal infection or a cf infection?

That’s the hard part of growing old with cf – interpreting the signals of not feeling well.  What’s cf-related?  What’s conventional-illness related?  Having this disease in like having two minds.  All information must be interpreted through both.

Going on vacation?  One mind says “great.” The cf mind says “bad idea, plane flight, germs – all leading to a hospital stay in another state or country.”  Planning a month out causes the same two-mind thought process.  Will I be in the hospital?  How will I feel in a month?  It’s so hard to tell the future beyond this moment. There are very few trends to rely on because my health can change overnight.

I wish cf was an exact science.  Black and white.  However, its symptoms mirror other common ailments at times, and it’s hard to know if it’s cf or something else.  Think about the medical elements that have to line up to determine if you’re having an exacerbation.  Fever? PFTs? Weight loss?  SOB?  Appetite? If they all line up negatively, like a slot machine showing all cherries, you win a trip to the hospital.  Jackpot.

The hard part is when they don’t all line up, when three out of five go one way, but the other two go the other way.  You’re left to gut it out and wait.  Perhaps, try some cipro.  Then a root canal mucks up the living experiment and you’re left to consider another variable.

No complaints here.  Just a lot of thought.  How many cherries will come up tomorrow?

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