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CF Stuff

CF Appointment:
I had my CF appointment on Friday and I'm happy to report, I'm doing well.  PFTs are up a bit from last time:  FVC = 97%; FEV1 = 87%; FEF25-75% = 59%

My small airways are still lower than where I would like them.  Just 2 years ago they were consistently in the 80% range.  So, I need to figure out what is causing the slope and how to get them back up.  I'm going to do some digging into when I started Cayston and if I was on my cycle when I had lower scores.  Not blaming Cayston, but that's the only thing I've done differently in the past few years ;/

The doc prescribed me a bisphosphonate that will help with my osteopenia.  It will be a once a week medication.  I just picked it up today, so I'll get started this week.

I'm feeling pretty much 100% from the creeping crud that I had - yay!!  I was told not to start the HTS until I was completely better, so looks like I will be getting on that soon.  My only hesitation is that I am starting Cayston this week and I do not want 5 treatments a day.  No need to set myself up for failure on my first attempt!!

I think thats about it...happily, it was a pretty easy appointment!!


CF Study:
I participated in a study last summer, and I was excited to get to do it again!  I wrote about it here.  I went on Monday for my first day.  Just like last year, it is studying arterial health in CF patients.  Last year, they determined there was decreased function, so they are trying different medications to see if it helps.

Basically, I went and rode a stationary bike until I couldn't go any longer.  I guess the good thing is that my legs tired out faster than my lungs!

I'm going again on Friday!

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Hello?

I'm back!!!

Unfortunately, I've been MIA due to some family medical stuff.  We had quite a scare with my stepdad.  Thankfully, he is out of the hospital and recovering!  He will be staying with Will and I for a while so we can help nurse him back to health.


I never thought about losing a parent before.  As I grew up, I lost my grandparents and understood that I would have to worry about losing others as they too got older.  But, I never imagined being 30 and having to think about a parent leaving my life.  What a scary thought.  It definitely got me thinking.

Life is precious.  I can't sweat the small stuff.  I shouldn't worry about stupid things that really don't matter.  You never know how much time you have left in this world, so enjoy every moment that you can.  Have fun!  Let those that you love know that you love them.

I am not done with my parents.  I still need them ALL.  I don't think that will ever change though.

Pupdate

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