You see, for those who don't know already, I have Cystic Fibrosis. Cystic Fibrosis is a life-limiting lung disease and I was diagnosed when I was six weeks old. Basically, I've had it since I was a foetus. As you can imagine, my life is full of medication, phlegm and lung function tests. However, in June 2020, a brand new revolutionary drug was about to come onto the scene which would change everything - Kaftrio. Kaftrio is a triple combination treatment that helps tackle the underlying causes of Cystic Fibrosis. In other words, it's the closest thing to a cure. Well, one that I will see during my lifetime.
Fast forward from June 2020 to March 2021, I received my first Kaftrio delivery in a lovely little box. A box with a drug that can potentially change my life for the better. So, on the 5th March 2021, I swallowed my first two Kaftrio tablets and waited for the effect to kick in. I'm not joking guys, after 15 minutes, the phlegm was coming out of me like lava. I literally couldn't believe how much my little lungs had stored down there! I'm sorry if you're eating your tea while reading this! The day was then spent coughing and spluttering phlegm into a pot and feeling in disbelief that two little tablets could do so much! Honestly, phlegm was coming out of places I never knew existed. Again, I'm sorry if you're eating your tea.
The next few days followed and I started to feel the difference - in a good way. I could take a deep breath in without it being painful or having a coughing fit afterwards. My lungs just felt incredible! I did a lung function test a few days after my first dose and my LF (lung function) shot up 7% in four days! Stunned isn't the word for it!
A few months later, my lung function monitor was giving me numbers I don't think I could ever aspire to in my whole life! I honestly never felt so well!
Obviously, all new medications bring with them their side effects. First, it started with acid reflux (under control now). Then came along sinus issues (kind of under control now) but at the moment (touch wood) things are ok. In this last year also, I've had Covid twice (thankfully made it through each time) and two chest infections. But that's ok. Thanks to Kaftrio (and Covid vaccines) I have managed to come through those obstacles unscathed thankfully!
One of my biggest, or actually biggest, issues with Kaftrio has been my mental health. I won't sugarcoat it, I've struggled. In a recent blog post, I talk about why I have been feeling overwhelmed by my future. Read here.
I think going from the probable prospect of a shorter future to the prospect of a brighter long term future is something I've been struggling to get my head around. My mental health has been up and down like a rollercoaster because of this. I've struggled.
It's something that I need to work through in my own time and at my own pace. This overwhelmingness is not going to disappear overnight. But with the help of my support network and psychologists at the CF clinic, I know I'll weather this storm. Because the first six months of Kaftrio was such a novelty that I didn't really think that far ahead. I was just enjoying the moment and enjoying feeling so well. In between that six month - 1 year period was when I started to fully comprehend everything.
As I said, no new medication is going to come without its problems. Even Kaftrio has its tiny flaws and imperfections, but it's worth it.
One other thing that has gotten to me also is survivor guilt. Let me explain. Some people with CF cannot have Kaftrio because they don't have the right gene mutations that would help Kaftrio work its magic. I have a lot of CF friends who are on Kaftrio and are benefitting from it massively. But then I have some CF friends who can't have the drug for that gene's reason. It's incredibly heartbreaking and I kind of feel guilty for talking about Kaftrio online. It kind of feels like that I am rubbing their face in it. Don't get me wrong, that would NEVER be my intention in any way. But the only time I do talk about it is if I need advice about it. Otherwise, I just keep myself to myself and let Kaftrio do its job.
So, one year on, Kaftrio has completely changed my life.
It's not only helped me physically but it's made me learn about myself a lot mentally. As long as my liver continues to like it (it can affect liver function), then here's to a future on Kaftrio!
I hope you've learnt something from this post and if you have any questions, comment below or DM me and I'm happy to answer!
I'm so pleased this drug has worked so well for you! I'm glad you're getting the support you need to deal with the mental side effects too, sending lots of love!
ReplyDeleteAmy x
callmeamy.co.uk
Thank you Amy! Having that support to help me through my mental health has certainly been valued! x
DeleteI am so happy to hear how you're doing. It sounds as if the medication have really helped you find the support you needed. I truly wish you the best! All our best!
ReplyDeleteThank you very much! I'm glad to have such good support!
DeleteAs a nurse, I cannot tell you how happy I am for you. It’s so nice to hear how beneficial this medication has been for you and how it’s changed your life. Let’s hope that a cure for CF is around the corner and one that all who live with CF will benefit from. Thanks for sharing.
ReplyDeleteThank you lovely! I really hope there is a cure soon too, keeping everything crossed!
DeleteI'm so happy Kaftrio is working for you, Lucy. And while I do understand survivor's guilt, I can only say to you what was said to me: don't feel guilty for being happy you're in a better place now x
ReplyDeleteThank you Lisa! I love that quote, that's so true! x
DeleteThank you lovely! x
ReplyDeleteI'm so glad this has helped you! Don't feel guilty for those who can't have it. I know it's sad but you can't control other peoples illnesses.
ReplyDeleteCorinne x
https://skinnedcartree.com
I suppose so yeah, but I think as we all have the same illness, it's hard to not feel guilty! x
DeleteI didn't actually realise not everyone with CF could take it! Aside the MH issues, I'm glad Kaftrio is working for you. I can't even imagine how much of a difference it's made to you. Thank you for sharing your honest opinions as always!
ReplyDeleteClaire.X
www.clairemac.co.uk
Yeah I know Claire, I think a lot of people don't realise that! Thank you lovely, I'm glad that it's working for me too! x
DeleteI had the biggest smile on my face when you were first sharing your rapid progress last year when you first started taking it. It's phenomenal that one little drug can be so transformative, but I completely understand how that's a lot to deal with for multiple reasons too. I'm glad your physical symptoms are mostly under control now, I hope you see an improvement in your your mental health in the not too distant future x
ReplyDeleteSophie
www.glowsteady.co.uk
Aww Sophie, that's amazing that you have been following my progress since I started Kaftrio, thank you so much! I hope to manage my mental health now and make progress with that x
DeleteI am so happy for you! It's incredible how medicine has progressed and now we have things like this that are a real help. It's a shame that not everybody can take it, but hopefully they can come up with something else to benefit them too xx
ReplyDeleteHannah | https://luxuryblush.co.uk/
Thank you Hannah! Medicine has progressed so much, which is amazing! I really hope that everyone with CF will have the benefit of having life-changing medicine one day too xx
DeleteReading this made me so happy for you, Lucy! I know it's difficult to come to terms with everything, but one little step at the time! x
ReplyDeleteAww thank you Simona! The best thing for me to do is take one step at a time! x
DeleteIt is so great that you have had a positive experience and it has changed your life. Thank you for sharing your experience and your progress.
ReplyDeleteLauren - bournemouthgirl
Thank you Lauren, it definitely has and is still a positive experience!
DeleteI'm so incredibly pleased this worked for you, it's been such a pleasure following your journey while you became adjusted to this new drug! What a wonderful thing! xx
ReplyDeleteThank you Alice! Thank you for following my progress on Kaftrio lovely xx
DeleteI am so happy that this worked for you sweetie!
ReplyDeleteDanielle | thereluctantblogger.co.uk
Thank you Danielle! x
DeleteI'm so happy to hear that Kafrtrio has been helping you! Thank you for sharing your experience.
ReplyDeleteThank you Karalee! x
DeleteSo lovely to read this is working for you
ReplyDeleteHere's to taking the mental side a day at a time!
Thank you Alice, it's good to take things one day at a time!
DeleteI can't believe it has been a year. I'm so happy that it has improved things for you.
ReplyDeleteThank you so much Kelly!
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