Orkambi Week 1

Hello everyone,

Today is a special day. Finally, finally, FINALLY I can start with a new drug called Orkambi. It’s the first medicine that treats the underlining cause of Cystic Fibrosis, and I’m lucky enough to have received my first box of this potentially life changing medicine.

Sadly Orkambi is not available yet for all patients due to price (it’s not accepted into to the health care system in many countries) or specific CF mutations (not all types of CF are the same, and Orkambi was developed for ones who have the Delta 508 mutation). I’ll write more about that soon, but I wanted to first start this blog by keeping track of what the drug does to me and (hopefully) keep track of my progress!

I’ll update this post during the week and start a new blogpost next week. Ready? Set? Go?!

Day 1

I took my first two tablets as soon as I left the hospital. I got myself a nice fatty milkshake and a burger. Not because I’m a fat slog (I hope to be soon) but because Orkambi needs to be taken along with fat. And is there any better fat than bacon fat? I DO NOT THINK SO. It’s been 3 hours since and I don’t feel anything yet. Lame.

Now it’s almost 8 hours after my first dose and I spent most of the time wondering if I already felt something. Like the first time you drink at a party or eat space cake as a teenager. Am I feeling it yet? Is this it? I feel dizzy.. Or not?

Just when I let that train of thought go and starting watching a movie it happened.

An audible “click” in my left nostril. Suddenly I felt a part of my sinuses open up and from that point on I felt the side of my nose open up more and more. It was a strange but very pleasant feeling like inhaling whilst eating a breath mint.

I’ll take my 2nd dose in an hour or two, and then go to bed. Big day tomorrow 😉

Day 2

Short after taking my second dose I fell asleep. Two hours later I woke up feeling pretty hot and tight chested. I had a really dry cough and my nose was running. I felt like that for about an hour and after that I felt my lungs opening up again and had a pretty good night of sleep. This morning I felt pretty normal and surprisingly good compared to some of the stories I’ve read of others.

I took my 3rd dose around 10 AM and that’s been three hours ago. Went for a long walk with our family dog and have felt no side effects yet today!

One thing I do find very interesting is that sometimes I suddenly feel how inflexible my lungs are because of CF. It’s hard to explain but it’s like getting a glimpse into what it’s like to take deeper breaths through clear airways, but you’re lungs not being used to actually do that. It’s a funny sensation.

Now that I write this it’s 10.30 PM and I took my second dose of the day. My entire day went by with any side effects. I’m quite surprised by this because of all the stories I’ve read from others about the first few days being very rough. I hope tomorrow will be the same.

Day 3 & 4

Yesterday and today have been great days. Practically no side effects and my cough has definitely changed for the better. It’s been very dry and especially in the morning I can notice the difference. I did wake up with a tiny bit of blood in my mucus but after some inspection it turned out to have come from my nose. My theory is that it’s because my sinuses are opening up?!

Since it’s only been 4 days I can’t really know yet if anything else has changed besides my cough and mucus, but so far I’ve been able to eat a lot without feeling full. Now (luckily) I’ve never had issues eating but lately especially I’ve been struggling to eat large portions during the days. Not with Orkambi so far and I hope to gain some weight before I go back for my checkup in a month!

That’s about it for today unless something major happens!

 

#Orkambi

Comments

  1. Itty Frankema - November 17, 2017 @ 12:18 pm

    spannend!

  2. Hans Blom - November 17, 2017 @ 4:43 pm

    Wat je moeder zegt 😉

  3. mariongooding - November 17, 2017 @ 5:24 pm

    This is truly thrilling! I’m so happy for you, friend.

  4. Hilma - November 17, 2017 @ 6:33 pm

    Wat super dat je het mag en kunt gebruiken! We hopen op heel goede resultaten. Ik blijf je volgen ?

  5. Nelleke van Hoof - November 17, 2017 @ 10:15 pm

    Geweldig Bowe dat je geschikt bent voor dit medicijn!!! Ook ik blijf je volgen, dikke knuffel, nelleke

  6. Ingrid Scheepers - November 19, 2017 @ 10:25 am

    Love is in the air. Ademen, zo doodgewoon, maar niet voor iedereen. Bowe, ik wens je heel veel lucht toe

Comments are closed.