Wanted to pop in and provide a really quick update on A’s appointment yesterday. I know he was really concerned going into the appointment and even thinking about a hospital admission. To be clear, he didn’t think he needed to be admitted. He wasn’t feeling bad, but he knew the previous virus he caught, was a bad one and he could feel it affecting his lungs. Antibiotics helped immensely and he was relatively back to normal when he started feeling another cold coming on over the weekend. I know that it’s so dejecting to catch a cold right before clinic and A was worried his doctors might overreact before giving him a chance to fight the virus. With all that said, there was good news and bad news from the appointment. Bad news first: A’s weight was significantly down. The lowest it’s been in years. Down 9lbs from his highest weight ever last appointment. I was really surprised. I guess seeing him every day, I didn’t realize he had lost so much weight over the course of three months. CFers know that decreased weight often results in a decrease in lung function so that was very concerning. Now the good news: A’s lung function was only slightly down. His doctor even said it was within the range of error of the spirometer equipment so wouldn’t even be considered down. Huge relief. A is to continue weighing himself and increase his caloric intake and if he doesn’t see an increase in the next few weeks, he’s supposed to call his doctors. Otherwise, he won’t have to go back for another 3 months. I have to give A major props because for the past month, he’s been doubling his vest time and also going for long walks. I really believe that these activities kept his lung function up and if he can continue these and increase his caloric intake, I think his lung function will improve more. We’re also going to try yoga, which makes me laugh just typing that, but apparently yoga is especially helpful for CFers.
Unfortunately, the appointment was with the doctor neither of us is very fond of. Just when I was thinking she wasn’t super annoying this time around, she made the following comment (I’m paraphrasing…): “The flu can be extremely detrimental to people with CF because of the bacteria in their lungs and many times they can’t recover. So good luck.” WTF?!? I’m not sure why we were talking about the flu. A hasn’t been tested for it or shown signs of having the flu. And good luck?!? Was she trying to make a joke? I have no idea, but what kind of doctor gives a “good luck!” as their only advice?!?