CF Appointment 12.4.2019

I've concluded my 2019 CF visits - got all 4 in, as usual!  This appointment was a bit of an overload as the main focus of my visit was to talk about Trikafta.  Being that my mom has lots of questions about this "miracle drug," she came along for the appointment so she could get all her questions answered first hand.  Boy does my doctor have a lot of patience!! LOL

So we went page by page through the Trikafta pamphlet.  There isn't anything too scary about the side effects - main ones being headache, upper respiratory tract infection (that doesn't sound fun), stomach pain, diarrhea, and rash.  Some other things are increase blood enzyme, increase liver enzyme and sinus stuff - nasal congestion, runny nose, etc.

My biggest concern about taking the drug would be having an adverse reaction.  I've been fortunate with medications so I have the fear that this will be the one drug that my body decides to go haywire on and make me worse.  I feel healthy and am so grateful for that.  I do not want to make my CF seem worse.  But my doctor put me at ease - obviously she can't promise that I won't have any reactions but I feel confident I'll be OK.  And if something goes wonky - I will stop taking it.

Some things we discussed that caused me annoyance more than anything.

1) Weight gain.   UHHHHHH! Why oh why?  Someone 5' 5" weighing 130lbs would gain about 6 lbs in 24 weeks.  WTF.  I'm actually trying to cut a few pounds.  Guess I better do some overkill since its gonna come back.   For most, this is a good thing.  My BMI has not been an issue since I finally hit 100 lbs in high school.  It will definitely be an adjustment.  I can't eat like a linebacker and not gain weight - my body will actually function more like a normal person with these meds.  Again good, but annoys me.

2) Grapefruit.  Can't eat them.  Dang it.  I love a good grapefruit and I really love some Stiegl Grapefruit Radler.  So I went out and bought some grapefruit this week to eat and cram it all in while I can.  Guess I won't get to enjoy a good beer by the pool next summer.

I know I sound like a total a-hole complaining about those things.  Obviously I'll take weight game and no grapefruit ANY DAY to be able to live a longer healthier life.  Hell, I'd give up anything - even Sour Patch Kids!

So - where does all this leave me and Trikafta?  Mom had all her questions answered and was comfortable with me getting the meds.  Yes, at 36 I still want my mom's approval!  LOL!  Will and I talked in great detail about Trikafta before my appointment and he was supportive with whatever conclusion I came to at my appointment.  So, my doctor has sent in the prescription and we are just waiting on everything to go through insurance!! 🥳

I'll have a whole other post about what happens once I start the medication, so be ready for that!  Keep those fingers and toes crossed that everything goes through!!

In the meantime, here's a look at my PFTs from my visit:


I was on week 4, day 3 of Cayston.  Numbers were slightly down, but I felt great!  We had just come back from a weekend in Las the lungs took a beating there with all the cigarette smoke!😷  Uhh! I can't wait for the day that Las Vegas is smoke free!! I know, I'll probably never see that day.  At least the ventilation is getting better out there.

Hopefully my next post will be full of excitement about Trikafta! Stay tuned!!

Me and Mom at my appointment 😷

Will and I on the way to Vegas! 🎰


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