Wednesday, August 12, 2015

Another Tuesday and Another CF Clinic

I took the day off of work yesterday to attend CF clinic with A.  W came with and insisted on having a checkup too.  He was cute and the clinic team was great with him, even checking his pulse, looking in his mouth, and offering a roll of exam table paper – ha!  He received a clean bill of health!  

One downside, I’m used to A having the same CF doctor.  They’ve recently added a new doctor to the CF team and A met with her yesterday.  I’m not a big fan.  I had planned to ask about Orkambi and if we could expect the specific mutation that A has to be studied in clinical trial.  Seems unlikely since A’s mutation is rare and if that's the case I wanted to know her thoughts on the likelihood of gaining approval for Orkambi as a treatment for A’s gene mutation.  I can probably answer this question better myself by looking at the ongoing clinical trials.  Anyway, I didn’t ask because I felt a little uncomfortable not having met her before.  I should’ve asked regardless.  I find doctors intimidating, which is silly.  One thing stood out, though.  She said she was on the fence about Orkambi since it only improves lung function by 3% and A’s lung function varies by 3% between appointments.  She implied that it was, for lack of a better word, relatively useless because ONLY 3%.  Here’s my take (and I obviously don’t have CF and I'm not a doctor so my thoughts are inadequate, but...).  3% is SOMETHING.  And if Orkambi improved lung function even a minimal amount, something is better than nothing.  Also 3% is the average so thinking optimistically, Orkambi could result in even higher lung function improvement for some.  This is a start and it makes me hopeful.  I would have loved to hear her say something to that effect instead of the negative assessment.

Most importantly, A’s appointment went well.  His lung function didn’t improve, but it also didn’t decrease, which is great.  His weight is holding steady and remains as high as we've ever seen it (and up about 20 pounds from when he was in the hospital last year!!).  Next appointment is in 3 months.

After that we headed to the Chicago Children’s Museum at Navy Pier.  W had a blast.  He says the fire truck was his favorite, but he also really enjoyed the mailboxes, car, bus, and grocery store.  Much to my relief, the museum wasn’t very crowded.  And you know he must’ve had a great time if he slept through the night AND slept 10 hours… score!!!  S stayed with Nani (thank you, Nani!) and I know he enjoyed having one on one time as well.

All in all, a really great day!

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