I have been taking Symkevi and Kalydeco since December last year. Together, they were the second precision drug to be used in Cystic Fibrosis, but the first for the F508del mutation. They are a therapy drug made up of Lumacaftor and Ivacaftor and together they help to keep a balance of salt and water in the organs, especially the lungs, by causing the chloride channels in the cells to operate more effectively. Since then I have had 0 hospital admissions and only one 2 week course of intravenous antibiotics, when I would have usually had about 4 or 5 courses in that time.
Earlier this year, the NHS signed a deal to make a triple therapy drug, Kaftrio, available to CF patients in the UK. In Cystic Fibrosis, the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) protein is damaged due to the mutation in the gene. Unlike Symkevi, Kaftrio is more effective as it is made up of Ivacaftor, Tezacaftor and Elexacaftor which all work together to target the proteins that are damaged by increasing the amount of CFTR protein at the cell surface to help it to work better. Therefore the Kaftrio will replace the Symkevi doses and I hope to see even more improvements in the upcoming months. I can’t believe this day has come after 24 years of kicking CF’s butt.
Although this won’t mean I’m cured... but maybe one day when we’ve seen such a change in just a year
The last 10 months (and 24 years of living with CF) have been bloody tough but I am pleased to say I got through everything that was thrown my way and I have come out better and stronger than ever! Never did I think in November last year this is where I would be. Last month I secured and moved into my own home. The second time around is better than the first, right? When you've loved and failed, it can be painful. But with this pain came a newfound appreciation for myself. Which I never believed would be possible. Today I returned to work after 23 weeks off and I return to University in a few weeks time to complete my final year of my Primary Teaching Degree. Those knockbacks were a blessing in disguise and the grass is definitely greener where I’ve watered it.
(Post from 29th September 2020)
(Post from 10th October 2020)
The last 11 days have been very overwhelming, to say the least! But as promised, here is the Kaftrio update for you all (see below). I’ve been flooded with loving messages and calls and it’s crazy to know that this many people are invested in my Kaftrio journey. This video’s a long one so get your popcorn ready and congratulations if you make it to the end of the video! Sorry, the quality is not great, I’d given up after 40 minutes of listening to my own voice.
As many of you are aware, my beautiful cousin Sian passed away 14 years ago due to Cystic Fibrosis and I wish these drugs had come around sooner. Therefore, this ones for you Sian, love and miss you always.
(Post from 13th October 2020)
OMG I DID IT, 81%!!!!! Two weeks on Kaftrio and the wonder drug is really working!!!!
This time last year my lung function was 63% (2.06 litres).
