Saturday, May 16, 2015

Big Week...

Lots going on medically:

This week has been a big week! For example, did you know: this weekend is "National Walk Weekend" and there are over 150 Cystic Fibrosis (Great Strides) events (walks) taking place across the country just
during this weekend! How awesome! Make sure not miss out on Princeton's Walk today as part of my team (Team CF2) here!

 But wait there's more exciting news!...

The FDA advisory board recommended approval of Orkambi (a drug that targets an underlying defect for mutations DDF508). It was named Orkambi just recently, it is a combo drug of Lumacafter & ivacaftor. Side note: Ivacaftor is also know as Kalydeco (which was another drug that targets the faulty gene & its protein product, CFTR. This was for people with the mutation G551D ). Kalydeco & Orkambi are two drugs to actually target the defect, which means we are heading in the right direction.

Side note: this is not a cure, actually the 2 drugs haven shown to help lessen the amount of hospitalizations & increase lung function 2-4% ish on average. Having 2-4% back would be amazing & getting sick would really help with my daily life & quality of life. Here is the press release for the new drug's completed Phase 2 results!

Also, to see the amazing night we met Lewis Black click here!

Plus, the biggest difference in my life right now is GI & arthritis problems. As you know my GI problems were keeping me from work, I saw a specialist, and have a new diet. As I explained on my CF Facebook page, basically my pancreas isn't working enough even with the aid of my enzymes. Which I'm already on the highest dose. So I'm on an "Easy to Digest" diet.

No Nos: protein (beef, ham, fatty meats). High Fiber foods/ multi-grains, broccoli, beans, dairy (boohoo goodbye cheese), butter, hot spices, caffeine, grease or any fried foods.
I can have: White bread, pasta, rice, cooked veggies, any fruit, seafood, lean turkey or plain baked chicken.

It's been really tough, especially when eating out! BUT, it's working and I feel like I'm a normal person now.
Thankfully, my mom and Andrew have come up with great recipes and solutions. Like these Seafood pasta, and turkey/sweet potato meatballs.  AMAZING!

I really miss my steak, ham, meat sauce, cheese, cream sauce, and butter.... BUT, its sooo worth it. I can actually go back to work.

The only problem with my working or working-out for that matter, is the arthritis problems I'm having. I'm developing like bone spurs or something. My fingers are getting super knobby looking in the joints (and its hard to take my engagement ring on & off). Plus, the bottoms of heels hurt, especially my left. I think its a heel spur. I can't walk very long without it killing me. I've noticed my hips pop out of place more often and in general things like staircases are not pleasant.

But, even with Arthritis kicking my butt, I'm excited to go back to work now that my GI problems are figured out!

Speaking of which...Guess who is all set to take her real estate test!!! Me! So hopefully I'll be selling real estate working for the agency I want in less than 2 weeks!!! Exciting. Whew a lot going on. Plus this weekend I got to spend the weekend with my family, catching up with a few friends (even one from out-of-state) and another best friend's baby shower tomorrow!

And this Wednesday I start a new clinical trial! LOVE doing clinical trials! :-) Keep everyone posted!


  1. What trial are you participating in?

  2. Your post is really providing good information.. I liked it and enjoyed reading it. Keep sharing such important posts

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  3. Sarah, Its for inhalation solution P-1037 ( breathing treatment used with or in stead of the hypertonic Saline...) I'm excited to start it :-)