So E has officially been taking Orkambi for a week. Here is what I noticed:

Cons:

  • She had some mild chest tightness and shortness of breath for a few days. She had to sub herself out of her soccer game on Saturday morning because of it. That only lasted about 3 days.
  • She had some mild fatigue, also for about 3 days.
  • She had some stool changes, but she wouldn’t tell me specifics! 🙂

Pros: (This is the stuff to get excited about!)

  • Unless she has just been outside playing, her skin is not salty when I kiss her! She has been complaining because my husband and I keep licking her forehead. 🙂 You have no idea how big this is for us. We noticed her salty skin within days of her birth, and she has always been very salty, even if right after a shower. Remember in my last post, Our Journey with Orkambi has Begun, I mentioned that she broke the scale on the sweat test.
  • Her blood sugar has been much lower. E has CF Related Diabetes (CFRD) and has been insulin dependent for a year. We had to lower the rate of insulin she takes because she was having too many lows. This effect happened within 12 hours of taking her first Orkambi pills! She is now on the the lowest dose of basal insulin possible. (Basal insulin is the small amount of insulin that the body keeps in its system all day long. E’s insulin pump provides this for her. She now is only getting 0.1 Units per hour.)

We have not seen any other changes yet, like increased stamina or energy, but it’s only been a week. I am ecstatic that she hasn’t had any horrible side effects, though I know they could still appear. Please pray with me that the transition continues to be smooth and that we will only see benefits!

 

Medical Disclaimer

 

Journey with Orkambi-Week 1

3 thoughts on “Journey with Orkambi-Week 1

  • April 15, 2016 at 10:22 am
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    Amazing! God is so faithful! It’s so encouraging to see our monetary donations leading to real life-altering effects in CF patients. We’ll continue to pray and walk until we reach a full cure! (By the way, remind me to tell you your nephew’s suggestions for curing E. The kid thinks he’s been to medical school!)

    Reply
  • April 15, 2016 at 12:27 pm
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    This is wonderful news! Still praying for a cure, though.

    Reply
  • April 15, 2016 at 4:34 pm
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    So excited the benefits seem to be outweighing the side effects! Praying it keeps on doing that!

    Reply

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