“Don’t take your organs to heaven; heaven knows, we need them more here”
My name is Rosie, and I have Cystic Fibrosis (CF). Shortly after I turned 18 I was told I needed a lung transplant as my own lungs were damaged as a result of numerous chest infections and scarring. I had just graduated from school and was embarking on a four year degree in psychology when I was told. It didn’t come as a huge surprise; even though I’d been fortunate to have a good and healthy childhood, I had spent a lot of my teenage years in and out of hospital.
I am the third of four children in my family and the only one with CF. After endless colds and failing to put on weight as a baby I was diagnosed with Cystic Fibrosis when I was 6 months old. Cystic Fibrosis is a genetically inherited disease which can affect the lungs, the liver, and the digestive system and can cause secondary problems such as Osteoporosis and Diabetes. For me, my lungs were worst affected.
A lifelong medical regime of medications and treatments in order to give me the best possible quality of life began. This included physiotherapy twice a day, nebulised treatments 3-4 times a day, as well as an array of colourful tablets scattered throughout the day. As well as the above treatments, because I had a very bad appetite, I began taking feeds at night when I was two years old. I had a tube placed in my stomach and a machine would pump liquefied calories into me as I slept every night. Occasionally I would become sick with chest infections, and would require a two week stay in hospital to receive intravenous antibiotics. To an outsider looking in, it may seem daunting, but having grown up this way I know no other.
Cystic Fibrosis is a progressive disease, and although I enjoyed a fairly healthy childhood, and took part fully in life’s activities as much as my peers did, I began to notice a steady decline in my health when I was about 12. I would get recurrent chest infections and my lung function level was slowly dropping. I continued to go to school and play sports when I could, as well as travel and go shopping. When I was 17, and had started sixth year, the episodes of infection were getting closer together, and I was finding myself more tired and sick with each one.
In November 2005, it was decided that a transplant was really my only hope should I wish to get a proper life back again. At just 6 stone I had to put on weight before being listed and thus had to be fed special food through my tube 3 times a day. After achieving my target weight, I was placed on the waiting list for a lung transplant in Newcastle England in February 2006. By this time I was spending more time in hospital than I was spending at home, requiring antibiotics and oxygen constantly.
There is a serious shortage of donors and some people I knew waited up to 4 and half years for their transplant. Sadly, I also know some people whose time simply ran out waiting. Bearing this in mind, I knew I would just have to be patient, as I could be waiting a while, and try my best to ignore the reality that my time may never come at all.
While waiting for transplant, the progression of the illness continued, and I found myself getting breathless doing simple tasks. Everything I did required planning; for example, I would make sure I had everything coming downstairs in the mornings to save me going back up. There was no such thing as staying over at friends houses (as this would require feed, feed pump, oxygen machine etc). Shopping became a rare trip as I couldn’t stand all the walking required.
On the 1st of July 2006, I got the call I had been waiting for. I was terribly nervous as myself and my parents set off in the ambulance to the airport. A small plane awaited us there to take us to Newcastle. The trip over was surreal, as I kept hoping that the next time I flew I would be a changed person.
I went in for my operation some hours later and everything went well. I woke up in ICU speaking long sentences without taking a breath or needing to cough. When I did cough, there was no loud rattle or wheeze; it was a beautiful (as beautiful as coughs can be) clear cough.
Before my operation, my lungs had been functioning at about 22-28% of what they should have been. Now just seven days after my operation my new lungs were functioning at almost 100%. After one or two initial setbacks, I continued to recover well and returned home after a month in England and just 3 days before my birthday.
As an 18 year old, who had just completed her leaving cert I was facing a very different, often bleak, future to the rest of my friends. Although transplant isn’t a cure for my Cystic Fibrosis, receiving it means I now have a future. Having the transplant has enabled me to go back to college, do unimaginable things like walk the Ladies Mini Marathon but while these things are fantastic, it’s the everyday tasks of running up the stairs, and not having to rely on people to help me with simple things, that make it so worth it. Even though it’s now been 18 months since my transplant, every day I am reminded of precisely how lucky I am.
Thanks to my donor’s generous gift of life, I am able to do things that I could never have imagined possible just two years ago. I am enjoying life more than I ever have done and I now have a whole new future to look forward to. I can never repay the debt of gratitude to them and their family. “Thank you” will never be enough.