Breathing Deeply: My Life With Cystic Fibrosis

Breathe from within. --Thomas Leonard





The fun began at 4:15 pm. I showed up a bit early for my PFTs. I gowned up, put on the gloves and nose clip and stepped into what I call "the phone booth." My first round wasn't too impressive. The second one was an improvement. After I coughed a bit to clear out some gunk, my FEV1 went up considerably. I had enough energy to do 5 trials. Each one was better than the one prior, and my competitive nature almost took over. I wanted to hit 70% and probably could have, but I let it stand at 68% of predicted. (In case you're wondering, that's an FEV1 equivalent to 2.30 litres.

When Brad arrived, we went upstairs to the doctor's office. There were a few other patients in the waiting room, which is not something I'm used to. To be honest, I was quite shocked how normal those guys looked despite the blue masks we wore to cover our mouths.

I was ushered into room 3 and fidgeted a bit while waiting for the gal to come get my height and weight. Then it came...the moment of truth...drumroll please... gained! WOO HOOOO!!! I'm still underweight--my BMI is only 19.5--but I had improved from my last visit. The doc was happy and said to just keep doing what I'm doing. To be honest, my appetite hasn't been all that hot, so if it improves, then I'm definitely on the right track.

One thing I appreciate about being at an adult clinic now is that I'm able to learn new things. When I was going to a pediatrician, I felt like I was calling the shots a lot of the time as far as when to start antibiotics and stuff. With the new doc, he jumps right in, looks at all my paperwork and says "here's what we're going to do..." Today I start on a round of levaquin antibiotic, as well as go back on the sporanox to get my IgE levels back down. I'm also going to be trying a new puffer called Spireva. The doc explained that it's sort of like serevent. I was quite wheezy when he listened to my chest, but I don't think it was because I was clogged up with a nasty infection. I think it was just residual Santa Ana stuff.

All in all, one of the best appointments I've had in the last 4 months. Still room for improvment, but at least I don't have to struggle to regain lost ground. I've got a short leash right now though--doc wants me back in three weeks. It's also time for all the annual labs: glucose tolerance test (yuck!!!!), vitamin levels, DEXA-scan, etc.