27 years ago, I was diagnosed with Cystic Fibrosis, an progressive illness which had the life span of 18 years old at the time in 1993. Since then, the median age of life expectancy has risen, treatments have changed, new medicine has been introduced to my body by the year and there is still no sign of a cure – until now.
Ok, not exactly a “cure” cure. But something pretty damn close.
On the 22nd July, I read the news on Twitter (typically brought to me by social media!) that a new drug, Kaftrio, was being licenced in Wales as well as England. Now, you’re probably thinking that it’s just another medication, no big deal. But you have no idea how big a deal it is for me. It’s huge, it’s momentous, more importantly – it’s life changing.
That Wednesday morning started off as a pretty normal, shielding day. I was looking forward to watching the Liverpool team lift the Premier League trophy that evening on my TV and that was going to be the highlight of my day. This news of Kaftrio becoming available in Wales in a matter of a few weeks came completely out of the blue. It had been licenced in England a month earlier and it was a waiting game in Wales.
Kaftrio is a drug that is going to correct the defective gene in my DNA that is controlled by Cystic Fibrosis. It means bye bye to bad lungs, poor breathing, wondering if I could walk from my car to the hole in the wall because I’m too out of breath just sitting down.
Kaftrio is going to give me the life I never thought I would experience. I can maybe start to think about living past 40, getting married (I need to find a man first and foremost), having children, retiring, getting a pension and even getting a bus pass! I never even dreamt of having a brilliant future, I never expected too. I always had the attitude that I would take each day as it comes and mentally prepare myself each day for the worst to happen in the years to come.
I cried tears of joy when the news was announced. I just couldn’t believe it. It was news I was hoping to hear but didn’t expect to happen so quickly. The emotions I felt during that day were ones of excitedness, overwhelmingness, happiness, anxiousness, nervousness and a little bittersweetness. Sorry, that’s a lot of ness’s in one sentence.
The excitement of my life changing, the happiness of how I’m feeling for myself and so many others, the nerves and anxiety of praying it’ll work for me as well as it has for so many others who are already taking it and a bittersweetness for those who can’t have the drug. 10% of people with CF cannot take this drug due to them not having the right gene mutations or if they are post transplant. I, and so many others, won’t stop fighting until EVERYBODY with CF gets the life changing medications they need and can have. It’s only right, we owe it to them.
In a way also, I feel a sense of guilt. I feel guilty and insensitive for celebrating when I know that some of my friends can’t have Kaftrio. Since that Wednesday afternoon, I’ve kept very quiet on social media about it, I also haven’t celebrated with family and friends, it just doesn’t feel right for me. People will have their own opinions on what I’m saying here. Some may agree, some may think I’m overthinking this. Well let’s face it, I’m the queen of overthinking.
Going to bed that night, I had a stirring of more emotions and futuristic thoughts. Is this how it feels to know I have a good, potential future in front of me? Is this the feeling of not worrying about when in my thirties am I meant to die? Is this the feeling of a new found freedom which I never thought would exist for me?
These thoughts are that people who don’t have CF don’t think about. They don’t need to, they’re as healthy as a horse, I’d have given anything to have that life. Unfortunately Mam and Dad decided to do the dirty deed and ended up with a baby with a life threatening illness. Still, that’s life I suppose.
I’m going to keep calm until I see Kaftrio in front of my eyes on my consultants desk. I’m one of those people who doesn’t get their hopes up too quickly to risk getting hurt.
One thing I can say is that I’ve been fighting CF for all my life, it’s finally time to stop and let Kaftrio do some of the work for me!
But yes, I shall celebrate a teeny bit and get started on the rose or vodka and drink to a better future. Cheers!