Two sides of the (CF) coin
– By Alison Smith
Living with CF, for me there are almost 2 different worlds, before kaftrio and after kaftrio. Before I was on this new drug my whole life has revolved primarily around my health, hospital life and medication, and the ripple effects from those reached into every corner of my life. My primary focus was my family and making sure my daughter didn’t suffer or miss out on anything because of my health, and there were many times I’d be in hospital and we would have to adapt how our lives functioned etc. and if I was at home unwell, I’d have to make sure we did quiet and restful activities (this is when she was much younger by the way), so I didn’t have to exert myself. I couldn’t work for a period of 6/7 years and then I managed a very part time job working for my mother which allowed me the flexibility to work and manage my health. Socially I would be one of those who said yes to everything, and then the day of, have to cancel my plans because I wasn’t feeling well.
Money was always something I was conscious and for many years we lived off one wage, but we managed and still had some days out etc. main thing with money was the food shopping as I needed extra calories compared to a person without CF, so that was something we were mindful of.
I won’t lie, the year before I started kaftrio, (2019) I felt like my health was on the slippery slope downhill into the severe bracket, I was struggling to walk and talk at the same time, so breathless, I’d cough until I passed out, and I was mentally and physically exhausted. We went to Florida in the November and the flight was 9.5 hours long, and I struggled with breathlessness – hindsight says I probably needed O2, and I think at that point I did have thoughts about whether this would be our last abroad holiday as a family. And some dark thoughts creep in when you feel that exhausted and I found it difficult to bring up these thoughts and feelings with anyone. I really wished I had offloaded these with a phycologist or other external support. My husband and daughter Harriet were my absolute rock during those few years, they are the best support I could have had however I kept things bottled up as I just wanted to be “normal”.
Kaftrio : things begin to change
Then we have Kaftrio, the first 6 months of 2020, I was on shielding due to Covid which shut the world down, and the UK made everyone who has CF stay shielded inside their homes for many many months. I was as well as I had been in years thanks to this isolating, and also not working, and avoiding all people so I was feeling good and germ free. I’d had some conversations with my consultant about this new medication coming to the UK soon and it was thought I wouldn’t be eligible as the genes I have one of them wasn’t listed. But in the end, I was eligible and the first person in Leicester to be prescribed it! What a monumental moment that was, I remember telling my mum and she just dropped whatever she was holding and cried- she has wanted this outcome for all my life. A moment I won’t ever forget. When I started it, within 10 days my health was turning! I could breathe! Crackles had gone, my inhalers were dormant on the side. I could walk and talk without much issue! My lung function went up from 50-% on a good day, to 68% – It has climbed to 75% now! – the main thing was I could engage and be an active and present mum to Harriet. We did some seaside trips, and bike rides which on one ride she said to me “mum you aren’t coughing, dads coughed more than you!’ – magic.
A changing world
The first year of Kaftrio I stayed on furlough from my work and focused completely on my health and that enabled me to go back to work safely and with a positive mindset! And the last 6 months I’ve changed my job and gone full time as a cinema manager something which I love doing and seeing lots of people, something I didn’t dream of. I am finally able to work full time and for the very first time I feel normal and able to do anything my colleagues do!
Parenting with newfound health
Parenting with CF revolves around so many variables and it’s hard to navigate sometimes or explain to those who have no idea of this lifestyle of living with a Life-threatening condition which is limiting despite looking healthy on the outside then Add the complexities of having a life changing / saving drug and you might not even recognize yourself and how to deal with the changes. For children of those who are in this situation all they see is the mum or dad who can now do so much more! And they thrive on it! The guilt that I feel though knowing I couldn’t be that parent in her early years is there – sometimes it’s hard to describe but I am so thankful I can now be the fun mum, and the one who joins in and gets active! It’s our turn!
Everything is much better, my relationship with Harriet is the best it could be – except for the teenager strops! – we do hikes with the dogs, swimming and travelling- all without the shadow of CF hanging over me. I’ve been able to be a better wife that I can actively do more things round the house and stay awake longer! Little things!
My mental health is in a good place, living the life that others take for granted is good. There is always the chance that things can change but for now I’m just savoring each moment!
There are some ideas for relaxed activities on the www.cfmothers.com blog which can be helpful if you have times with low energy.