Tuesday, October 11, 2016

Orkambi: 1-Year Update

I can't believe how fast time marches on. As of, Sept 13th I've been on Orkambi for 1-year. I remember thinking I'd never live to see the day that a drug that treated the underlying cause of Cystic Fibrosis would hit the market. However, on Sept 13th, 2015, that much anticipated pink pill hit my hot little hands and I joyfully placed it on my tongue with a big gulp of water - down the hatch it went!

Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.

So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.

While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.

I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.

We ARE making great strides and there IS so much hope.


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