Kalydeco…Month 1

I am officially in week number 4 of my Kalydeco journey so I thought I’d share some of my ups and downs, but mostly ups.

For those of you who don’t know, Kalydeco is the only FDA approved medication that effectively treats the malfunctioning protein causing the symptoms of Cystic Fibrosis. At least, that’s the nutshell version.

I have always been rather healthy, 94 PFT, don’t take enzymes, but I cough a lot. Mostly at night after too much exertion. Kalydeco, has changed all of that.

I was told to give it at least 2 weeks before I saw any real changes and now…well…

  • I take my pill twice a day, 12 hours apart. I take mine at 10am and pm.
  • Finding fatty foods is super easy, finding ones you want to eat, not so much
  • I was experiencing chronic daily sinus headaches, I’ve had 3 in the past 4 weeks.
  • I have slept through the night, every night since week 1.
  • My BMs have become more regular.
  • I still clear my throat…a lot
  • I coughed violently the first few nights, vomiting was involved.
  • My skin has broken out.
  • Some discharge pre-period (it ended yesterday so we’ll see)

Overall, mostly ups though. I can deal with a lot of things so hopefully the break-outs and vaginal upsets will dissipate as my body begins to adjust to it’s “new normal.”

I have my first CF appt since starting Kalydeco on March 11, so we’ll see if anything else has changed. I’m really looking forward to getting back in the gym to see how my breathing changed there. Hopefully I’ll have that opportunity next week.

Until the next update: GO TEAM KALYDECO

Advertisements

4 thoughts on “Kalydeco…Month 1

  1. scott says:

    http://Www.gofundme.com/lg6lrs

    I’m a cf’er as well. I’ve had a dble lung transplant and bow almost 5yrs post I’m looking and potentially another dble lung and possibly a kidney transplant. I’m supper excited for you!! My cousin has c.f. also and I praying she has the correct gene for this treatment. My prayers are with you!! #GOTEAMKALYDECO !

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s