Free at last

It’s been a year since I started the cystic fibrosis (CF)* wonder drug Kaftrio and a lot has changed for the better…

Here’s my Top 10 list of positive changes:

1. I have more energy and have gained some weight.
2. I rarely cough at all now compared to previously coughing most of the day and night. I don’t suffer from the habitual choking episodes at night, where I felt close to never catching my breath!
3. I have not needed an Intravenous (IV) session to re-boot my lungs and remove chronic infection since February 2020 and it’s not even on my radar to even need such a treatment.
4. I have reduced some of my treatment and tablets burden
5. I have been able to maintain and incrementally improve my lung function and fitness via regular exercise.
6. I was still able to run twice a week during the winter when I was forced to run outside in the cold due to gyms being closed during the many lockdowns. I hadn’t been able to run outside in the winter months for well over 10 years.
7. I felt fit enough to be able to re-commence playing field hockey after a break of two years.
8. I was able to play whole games of hockey for the 1^st time in over a decade and felt like I could be competitive on the pitch, rather than just existing.
9. When I’m playing, I never need to cough up mucus, which was a real problem for the majority of my previous 40 years of playing.
10. As well as being double vaccinated, I feel more protection should I ever catch Coronavirus or any future infections.

Tim with Katie & Felix in the Isle of Wight, July 2021

For transparency, I’m far from cured and I still have some health challenges:

1. I still take over 30 pills a day and do around 90 minutes of different treatments (including diabetic care) per day.
2. Kaftrio does not reduce the 50 years of lung damage so I will need to wait for a different medical intervention for that one.
3. There has been a one significant side effect to navigate which has caused me different issues and I’m still looking to find solutions for it.
4. I also got injured (on purpose) by a hockey opponent back in June and had to have 4 stiches in a vertical wound in my right kneecap.
5. I am beginning to feel the effects of loss of hearing caused by a number of medications (which I have now stopped taking)

Tim having just played a full game of hockey for the 1st time in a decade, June 2021

Overall, I feel blessed with the better quality of my life, being able to take deeper breaths, exercise with more energy and the positive outlook for my life with my family and at work. I’m not free from CF but I feel free at last…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.