Just a quick update to say my lungs are going well but I have had some other health issues, will write more in another blog post. Hopefully soon 🙂
In the meantime I thought I would add my speech from the recent CFSA ball:
Hi everyone, my name is Gen, and I’d like to share my story about living with Cystic Fibrosis.
I was diagnosed with CF at the age of 3. I was too young to understand what this meant, but it was a massive shock to my parents as nobody knew CF could be in the family. Back in 1989, my parents were heartbreakingly told that my life expectancy was mid to late teens.
Straight away this meant I needed to take many tablets each day, spend an hour a day with chest physiotherapy and have regular check ups at the hospital. My health was reasonable at first, but it got worse as I got older, and I started needing regular hospital admissions. I missed weeks of school at a time, due to chest infections, my digestive system, and even a stroke at the age of 7.
During high school my health declined, despite spending 6 to 8 weeks a year in hospital for my lungs, and having overnight feeds from the age of 12, in an attempt to help me gain weight. This was also when I realised what CF meant, as I saw many of my friends, who were the same age as me, becoming sick. Sadly many passed away. I hoped that I was a long way from needing a lung transplant, but my uncertain future and the realisation that I was not going to live as long as my friends was impossibly hard to accept as a teenager.
I worked hard to catch up work throughout high school, often to the detriment of my health, and through determination achieved a year 12 score of 99.6. This was then followed by uni, where I studied Biomedical Science, and then Physiotherapy. Despite my health continuing to decline, I was in the top 15% of both of these degrees.
I knew that a transplant may not be far away, so I always tried to do as much as possible whilst I was still well enough. This lead me to study in England, work as a ski instructor, teach English to children in asia and to travel and see as much of the world as possible.
My lung function continued to get worse and in 2012 it reached a very low 41 percent. To put this in perspective 30 percent is commonly when transplant is discussed. By this stage, I had been admitted to hospital over 60 times, which meant I had spent more than 3 years of my life in hospital.
I reached the point where I was puffed out with basic things like walking, spent hours a day on never ending treatments, and struggled to keep up with work and uni. I was very worried that my health would get worse with even a simple cold. At this point I was extremely fortunate to start a revolutionary medication called Kalydeco, which treats the underlying CF defect, helping 8 percent of people with CF.
The change with this medication was astonishing, within weeks I was back at 70 percent and my health was stable for the first time in my life. I stopped needing regular hospital admissions, and I have now been out of hospital for over 2 years, which is a 20 year record for me.
Kalydeco has allowed me to do things that I never thought I would be able to do, like visiting Machu Picchu, at a very high altitude, with no breathing issues whatsoever. Kalydeco has also changed my life expectancy significantly. I can now stop worrying that a transplant, or a life threatening chest infection is around the corner and instead think about having children and my career as a physiotherapist. I even need to think about superannuation.
The amazing changes that I’ve experienced first hand highlight the importance of research. Whilst I have been very lucky, sadly I have lost too many friends to CF, many that were younger than me. The reality is that for 9 out of 10 of my friends, there is no Kalydeco yet. We need research to occur as quickly as possible, which is one of the key areas that CFSA aims to support.
I feel extremely fortunate to have benefited from this amazing break through, in fact it feels like I’ve won the lottery, and I can be excited about the future for the first time in my life. And it’s with your help, that I hope my friends can grow old with me.