My pulmonary function tests yesterday showed that my capacity was up by 2% to 49% and my function was up 1% to 32%. It’s frustrating not seeing the kind of improvements that I’m feeling. I feel a lot clearer and breathing is better since Monday. I even got on the bike for 10 minutes yesterday and the day before and have been walking around the halls more. I like to do it at night when there’s no one around because I usually have to drag my iv pole along with me and dodging doctors and visitors during the day is a big hassle. So during the day I sleep when they leave me alone long enough. I’m almost nocturnal!
The steroids have finally sparked my famous appetite. I’ve been a bottomless pit for a few days now, to my own suffering, unfortunately! I haven’t really been hungry, but I just can’t stop eating. I end up feeling full all the time, which makes it hard to breathe. They’re also giving me cravings for odd foods that I normally don’t eat, like corn dogs and fig newtons. I’ve eaten 2 sleeves of those things in 3 days! You’d think with all that I’m eating I’d be gaining weight like crazy, but I was only at 118.7 pounds yesterday. I guess it’s going to take more work on my end.
Yesterday was an interesting morning, and right now, when I say, “interesting” I mean it was awful. I was not only woken up by a fire drill, but my blood sugar was low and I was trying to get someone’s attention to check it and bring me some soda and food. It seems like every time they check it it’s low or on it’s way down. I wish it weren’t such a trial-and-error process, because I’m tired of the peaks and valleys.
My CF doctor is now the one rounding in the mornings, so it’s nice to have a familiar person coming in and waking you up instead of some stranger. It’s hard to entrust your health to another doctor who hasn’t been following you… or to any nurse or tech or pharmacist, for that matter. It’s they who are more likely to make a mistake that could cost you. Since being here I’ve caught numerous mistakes (wrong pills, wrong solution in the IV, tardiness, ignoring policies etc.). I feel like I can’t let my guard down sometimes. I just hope they’re paying attention when I’m asleep, because I sure can’t!