Cystic Fibrosis: How Symkevi Changed My Life
Having Cystic Fibrosis (CF) means I have spent a lot of time studying lung function graphs, most of my life just watching and hoping, always hoping it maintains stability. The slightest change in those lines running across the screen can give me a sense of relief or inspire pure panic. In the last couple of years, I had been seeing my lung function line taper down more and more and then then reality hit:
My lung function was declining faster than I felt comfortable with and these fears were only exacerbated when I plummeted from 48% down to 41%(FEV1) in one hit, last winter.
Not only was I seeing a change in those all important lines and numbers but I was noticing even bigger changes in my day to day living; walking my dog had become extremely difficult if not impossible on some days, I wasn’t able to go out and catch up with friends anymore, spending months in hospital and over half a year on IV antibiotics — that in itself coming with a whole host of problems. The development of intolerance and resistance to multiple drugs, my gut as well as my energy were shot and I was exhausted from being sick but even more exhausted from trying to get better or at very best, keep myself stable.
A Very Rocky Road
I had my annual review with my lead consultant in December 2018 who was concerned this was my “worst year yet” as we had maximised all treatment options available apart from the new CF modulators known as Kalydeco, Orkambi and Symkevi. At the time of this conversation, these drugs were not available through NHS England but only accessible on a compassionate scheme offered by the creators, Vertex Pharmaceuticals, which complicated matters further. This meant to access the medications I needed to be “sick enough” and my lung function was required to sit below 40% for 8 consecutive weeks.
Throughout the year my numbers were dropping to the low 30’s but as they came up to 41% in between times, I was not eligible for the access scheme at this point. It took a further 9 months of patience, perseverance and just sheer hope until I was able to start these life changing medications.
September 27th I Got My Chance
That was when I was able to start changing the game. I was handed the white box with yellow banding, blue and black text reading across the front. I started my first dose that evening and it has been an incredible journey towards a brighter and healthier future since.
In the first 4 weeks alone I see huge improvements; walking my dog or taking a flight of stairs felt not just manageable but comfortable for the first time in years. Energy, I had energy which meant I didn’t need several naps a day. I wasn’t needing weeks of IV antibiotics anymore and my chest felt clear — super clear. I didn’t cough as much, my sputum was pale and runny instead of thick and dark green. I felt healthy. I felt strong. And for the first time in a long time I felt like I was living and not just surviving.
Side Effects:
I experienced intermittent headaches and a sore throat in the first couple of weeks alongside the infamous purge of phlegm. I had insomnia for around 10 weeks but I believe that was my body adjusting to the new energy I had. All calmed down and now I am side effect free and feeling healthy.
The Numbers
Remember those all important graphs I spoke about earlier, well, I headed up to clinic for my first lung function review since starting these little blue and yellow pills. Throughout my fight for these drugs I wasn’t hoping for vast improvements in my lung function numbers. The purpose of these drugs and what had been seen in clinical trials was more health stability than big increases in FEV1 however that is not to say it isn’t possible as a exception to the rule.
So, there I was… staring back at that little graphs again and what I start to see over the following weeks astounded me.
My FEV1 prior to starting Symkevi sat at 29%, week two of treatment it had hiked up to 35% and by the fourth week of treatment I was at 41%. That is a 12% increase in 4 weeks. Incredible. Absolutely incredible.
These Drugs Work
The results confirmed what I already felt; these drugs work and they are changing my life. I am over 8 weeks into treatment now and I haven’t needed to check into hospital or take IV antibiotics. I am still finding moments which feel so surreal that I pinch myself. I had strep throat last week which didn’t leave me needing an emergency admission and weeks of drips, that hasn’t happened to me in over a decade. The changes I have experienced have blown my mind. This is a very exciting time in CF medicine and I am truly grateful to be a part of it.
This drug, these drugs, CF modulators are not a cure by far but, they are the closest thing we have.
