CF Appointment 9.16.2020

Anyone else feel like they blinked and it was September?  This year has been the longest and fastest at the same time.  The monotony of the days make them all a blur of walks, Netflix and doing nothing.  

Thankfully, I had a CF appointment on Wednesday, so I had a chance to get out of the house!  Not that the hospital is a place I really want to go, but at least it's not another day at home.   And I get to have human contact - haha!

I was only there about 2 hours, but it was a whirlwind of an appointment.  I saw my CF doctor, CF Nurse, Dietician, Social Worker, Respiratory Therapist, GI doctor, Physical Therapist, and had blood drawn.  The only team member I didn't see was the Psychologist, but I waved hello in the hallway.   I did not do PFTs at the clinic for 2 reasons.  1) I didn't want another COVID test and 2) I have a home spirometer! As part of the Trikafta study I'm participating in, I was able to get a home spirometer so that I can still do lung function tests whether I'm able to get into the clinic or not.  Yay!  

Fortunately there is not much to report.  I'm feeling great, have lots of energy, and am getting in my exercises and breathing treatments.  My weight has leveled off.  PTL!!!!  

I started running (let's be honest, it's more of a jog) about 9-10 weeks ago.  I used the Couch to 5K app so I worked myself up in time and distance.  I'm not struggling to breathe (even in the crazy SC heat and humidity), but I'm still not a lover of running.  I hate every minute while it's happening but feel great once it's over.  The biggest downside of my new hobby is that I've been having some crazy foot pain.  And being a self-made Google doctor, I diagnosed myself with Plantar Fasciitis.  So, I got some compression socks, ice my foot and try to stretch it and rest it.  When we are in WV, it isn't as bad when I run on the trail (which isn't paved), so I started running on the dirt (sand mostly) roads that are by our house.  The views are great as it's a bunch of horse farms and I get to dodge horse 💩 too! HAHA. 

But, back to my appointment.  Since I didn't do PFTs in the clinic, I don't have much to compare.  The home spirometer doesn't share the results in exactly the same way.  But, my FEV1 is 96% and FVC is 101%.  So, great numbers - yay!

My next appointment will be in December and that will be a big check in for the Trikafta study as well.  So, I'll plan to do my PFTs in clinic (which means a COVID test most likely).  EEK

Not CF related, but thought it would be worth sharing.  I spoke with the Pharmacist at my appointment about the problems I was having getting my acne medication refilled.  Yes - I'm 37 and use prescription zit cream.  Uhhh.  But, I've been on it for a few years now.  This was the first time I've refilled since my insurance changed in December and it's been a pain!  I have no problems getting my Trikafta which costs an arm and a leg (very thankful for that), but hell if I can get some zit cream.  What in the world?!?!  Long story short, the smaller/local pharmacies (which I like to support) would be losing money by filling the prescription.  WTF?  This is bananas.  I was advised to try using Foundation Care (which fills my big ticket CF drugs, like Trikafta and Cayston), and miraculously they can get it for me.  So after going round and around for 10 days with insurance and my dermatologist office, I was finally able to get the refill.  I'll be happy to get the goods on Tuesday.  

Well, that's enough of that.  I'm happy to have received another get report at my appointment! Yay!


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