CF clinic visit

Full PFTs
Originally uploaded by Beckerbuns

Ricky went to CF clinic on Tuesday for his quarterly follow-up appointment. Before the appointment, he did have a full pulmonary function test (which you can see him doing in this picture). The test took about 45 minutes, even with him goofing off and holding his breath, hyperventilating, etc. a few times (he thinks he's soooo funny!). :)

And the results were spectacular... One of his scores showed his lung function over 100%. Not bad for someone with a chronic, fatal lung disease, eh? This did manage to disqualify him for an upcoming clinical study he was going to participate in, but that's okay. We'd rather have him be healthy!

At the clinic visit, we first saw the nutritionist who noted that he'd put on 1.5 kg (a few pounds I think?) and possibly grown a little. I told her what the endocrinologist had said, about him being delayed in growth/puberty.

We then saw the doctor and I told her about what the endocrinologist had said as well. I also reiterated my concerns about his dizziness. She said that inhaled TOBI rarely causes vestibular problems, but she'd read of one (!) case. So she is referring him to audiology for testing. There is a hearing nerve that, if shown to have deficiencies, might also cause the vestibular problems, if I am remembering the conversation correctly. There is also another nerve that could be causing the problems, but we'll start with the first one.

I also reminded her that it has been a few years since Ricky had a dexa scan, which is something that people with CF and also those who take oral steroids should have done on a regular basis. So she is going to get authorization for that as well.

I mentioned that we need some more home supplies for port flushing, and the nurse told me how to get ahold of those.

The CF doc didn't need any labs drawn, so we went ahead over to the lab and just had the endocrinology labs done and then we went home. We were there from 10:45 til 3:30! (We did have lunch between the PFTs and the doctor appointment.) Whew!

So we go back to CF clinic in March, and meanwhile we'll get the audiology appointment and the dexa scan done, hopefully.

I am so stunned and thrilled about his lung function. Go Ricky!!!