By Sam Ira
It’s been an incredible journey living with cystic fibrosis (CF) and I’m so proud that I’m 45 years old.
Turns out, dreams do come true.
I find that keeping busy, working as a freelance Video Producer/Editor, playing ten-pin bowling in a league and doing my best to live a normal life has been helpful, but what’s “normal?” Growing older with CF has been a huge challenge, the sea air and my passion for fishing are an ideal therapy for the never-ending challenges of living with cystic fibrosis.
I’ve experienced two double-lung transplants – in 2009 and 2013 – and I still can’t believe I also had a pulmonary artery (??) in 2014 and even skin cancers quite a few times.
The need for a transplant was first raised by my doctors when I was 25. It took me more than five years to accept the reality of my life and I then finally signed on to the transplant waiting list. Within seven weeks of registering, I received my new lungs which was a great and very emotional surprise.
I never gave up under any circumstances and I’m always still trying to achieve my goals in life. To top it off I was even building x2 townhouses with my 47-year-old brother who also has CF. As the townhouses were getting built, I still can’t believe that a second double lung transplant was necessary; my lung function again dropped to dangerous levels – 18%.
The cause was believed to be a rejection of the 2009 transplant. There were several other health complications, and I undertook more than two years of hospital in-home treatment. Then, at the urging of family, close friends, and colleagues, I did commit to a second transplant.
While I was waiting for my new lungs, I was admitted pretty much permanently to the Alfred Hospital, as I had become critically ill. I then received news of another set of lungs but unfortunately, they were found to be incompatible. I was devastated and can’t even imagine how devastating it was for my parents and family.
I pretty much gave up and wanted to leave the hospital but three days later, a nurse told me that new lungs were available. I had my second double lung transplant which I still currently have, special thanks to my donor and family.
It’s hard to even explain, I try to imagine what I would have achieved without living with CF. Knowing that life expectancy is a lot lower, I’ve lived life to the fullest, I’ve been travelling, built townhouses, and moved into one. Still currently editing video projects, attending the World and Australian Transplant Games, playing ten-pin bowling, darts, table tennis and 5km runs/walks. In the past, before the Transplants, I couldn’t even walk and was always short of breath due to cystic fibrosis. So, after the transplants, I’ve started a new life all over again!
I still can’t believe what I’ve achieved in life, I can write a book!
Throughout my childhood and adolescence, I was reluctant to reveal that I had CF to my friends and classmates. But in my adult years, I’ve become an inspirational crusader for CF and organ donation. A video I also produced at the Royal Children’s Hospital for raising awareness and funds for CF won awards in Britain and the United States.
However, I find it harder to deal with CF mentally as I’ve lost quite a few friends to CF and transplants. I try to do my best not to keep thinking about it, but it’s become part of my everyday life. I set goals in life and I do think of the future at times, but in my mind, there is, “What if this or that happens?” For instance, if I had kids one day, would I see them grow up? I also recently had an unexpected shock, I was put on oxygen and just about went into ICU at The Alfred last week. Things can change so quickly. In reality, I take it day by day.
My parents Joe and Joan have kept me going in every possible way and they never give up.
My brother Vince, who is two years older than me (47), also lives with CF but has not yet required organ transplant or any other radical treatment. He has an auto-electrical business and is also an Educational Teacher at Kangan TAFE, and actually lives next door to me in the townhouse we built; we are so proud of our achievements together.
My younger sister, Louisa, a dental nurse, does not have CF. She also lives with me and I do highly credit her as a carer and helping to keep me healthy and happy.
Other inspirations in my life are my cousin Valentina, aged 13, and my 8-year-old godson Patrick. My goal is to see them grow up.
As for the future, I’m wanting to produce a documentary on my own life. I’ve got so many hours of video footage, including catching fish. But I still need to review most of the work. Hopefully, I will soon find the time and motivation – it is a story that needs to be told.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
