My name is Kate Rootsey and I am a 37 year old survivor of Cystic Fibrosis.
I was diagnosed when I was born. Growing up with CF was a little challenging to say the least with many hospital admissions. Each admission 2 – 4 weeks at a time each time. Hours of physiotherapy every day including nebulisers and over 50 pills a day. The list goes on.
Whilst growing up I missed lots of school, over 300 days in high school. Then I stopped counting. This was due to all the hospital admissions I needed, including the need for antibiotics to help clear my lungs from infection. I tried to be as active as I could, playing school sports and also club sporting events on the weekend to try and keep fit (softball, golf and netball).
I left school when I was in year 11 and got a job at Supercheap Auto. From there I have had numerous part time jobs as found it hard to stay in a job as most employers didn’t understand how I could look so well, but then need to have 3 – 4 weeks off to go into hospital. It made it very hard, I just wanted to be normal and go to work like every other person.
The next few years became difficult. I was having more lung infections, struggling to keep weight on (I looked like a greyhound). It was then that my team of Dr’s suggested I do Nasogastric Feeds (NG). I called them my ‘anteater feeds’. This involves inserting a long tube down your nose, past the back of your throat into your stomach. You do these feeds overnight when you sleep and the purpose is to gain weight.
In 2006 I realised that I was going downhill pretty quickly. My Dr’s also could see this happening. It was then that I was introduced to the lovely team of Dr’s and nurses at The Prince Charles Hospital (TPCH). My mum and I had a meeting with the Dr’s and it was then August 8th 2006 that I was listed for a lung transplant.
I lived in hospital during that time, only home for a few days with a Blue Nurse coming to help with home treatment. Mum was forced to quit her job of 11 years with no pay to help care for me full time at home. I was on oxygen, using a BiPAP machine, having continuous antibiotics and was wheelchair dependent.
I knew my time was running out fast, simple things like brushing my hair, cleaning my teeth and showering became impossible. Without having my Mum and Zeena (my dog) by my side I couldn’t have done these everyday tasks. I was asked by my Dr’s to write a will, not something most 27 years olds are asked to do. That was very confronting to me, that meant more or less I knew I was going to die, and I knew that they knew as well.
When you are on the waiting list for transplant you become very jumpy; every time your phone calls from a private number you have this bittersweet feeling. Hoping that it may be ‘the call’ that will save your life, and also the reality that someone has had to lose their life to save yours.
It was September 5th 2007; 12 months, 12 days and exactly 12 hours after being listed. I was at home on my BiPAP when the phone rang. 5pm in the afternoon. It was the transplant coordinator. She was calling to tell me they had an offer on a suitable match for me. It was that bittersweet feeling I was explaining before.
I knew I had new lungs when I woke up in ICU as I could breathe for the first time in my life without a struggle. I was only in ICU for 2 days and then up to the post surgery ward to learn my new regime of medications and diet. Life was looking up and I finally had my life back. I went back to work 4 months after my transplant!
Post Transplant Life
I held two jobs and then 8 months after my transplant I went on a trip to Europe for 3 months. I was living life again and it felt amazing. I could now walk Zeena, go for runs around Burleigh Headland, ride moto cross again and so much more. In September 2010 on the 3rd anniversary of my transplant I married the love of my life John (a.k.a. Wolfy). We met after my transplant at work.
These days I work as a part time wine taster, Project Officer at Cystic Fibrosis Queensland (CFQ) and being a busy mum to our daughter Molly. I speak at schools to raise awareness about CF, organ and tissue donation.
We as a family like to keep very active and know that it is a vital part of post transplant life – maintaining some fitness and normality.