Wednesday, August 10, 2016

Another Day, Another CF Clinic

A had his CF clinic appointment yesterday.  It seems like we were just there… time flies.  The bad news is no improvement, the good news is no significant decline.  His lung function was stable and consistent with his last appointment.  I’m always a little disappointed to hear it didn’t improve – especially since this is A’s Cayston month, BUT I’ll certainly take stable.

He was back up to his highest weight ever, which was great news.  I’m still waiting for the day when I weigh less than he does!! :)

We met with the doctor neither of us likes very much.  I’ve tried to pinpoint what exactly I don’t like about her.  I think what mainly bothers me is she doesn’t seem to genuinely care.  The other doctor that we do like knows us well and knows our family.  He always makes a point to say “we need to keep your lung function up so you can enjoy vacation” or “we need to keep you healthy for your family”.  He’s concerned and thoughtful.  This other one – not so much.  It seems like A is just another patient.  She made a comment yesterday about how her students were used to seeing the sick CFers in the hospital, not people like A.  Ummm ok?  Thanks?

Once again, I forgot to ask for the spirometry numbers.  I’m not sure why they don’t always show us these, but I can appreciate that the real measurement is how A is feeling.  And he absolutely knows when his lung function has declined.

A also had an audiology appointment yesterday so it was a long day.  Apparently some of the inhalers he’s on can cause hearing loss.  After very extensive testing, it was determined that his hearing was normal for the most part.  Possibly some hearing loss at very high frequencies (nothing to be concerned about), but there’s no telling if that was the result of inhaled drugs.

So a long day at the hospital.  But happy things went well.

In other news, A and I have been discussing what we can do to advocate for the CF Foundation and support finding a cure.  It’s tough because we are very private.  Yes, I keep a blog, but this is only a glimpse into our lives and I haven’t shared our names on the blog.  Neither one of us has been very open about CF with colleagues.  A has told a few that he’s closest to, but I haven’t told anyone.  Are you involved in any CF related groups?  How do you advocate or promote awareness?

And finally, I have a special treat – A post from A himself!!  I will share that tomorrow. :)

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