Where do I start? Well, I guess it's that time. It's here. The day that I have been looking forward to for the last 6 months has FINALLY come. I should be happy right? I've got a chance to do something that not many people get the chance to do, and that is to take this precision medicine, every day for the rest of my life...
A precision medicine is medical care designed to optimize efficiency or therapeutic benefit for particular groups of patients, especially by using genetic or molecular profiling.
Sounds confusing right? It is. I still can't get my head around how it works, but what I do know, is that Orkambi could change my life. In so many ways. I may not get as many chest infections, I may spend less time in hospital, my lung function may get higher again. There are a lot of things that could happen, but it isn't the same for everyone.
This is why I'm not sure how to feel... I'm kind of excited and happy, but at the same time, I'm nervous, I'm scared, what if I have a reaction to it? What if I can't deal with the first 2 weeks of feeling like utter shit?
My favourite nurse was on the night shift at Papworth last night... G said to me 'Kelly, no one knows how you feel, except you'
You know, he's right to a certain extent. Who are you to judge me on my feelings? Until you have walked in these shoes and down the exact path I have walked down, you have no right to judge me.
Feel what you feel, don't hide it. Talk to people when you need to, because keeping it to yourself is the worst thing you can do. Believe me, I'm there, but I have realized I'm there, and am trying to get the help I not only need, but deserve.
All my love. K 💖
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