New lungs, New Life!
12 months ago, Fiona’s life was very different, but that was before she received ‘the call’ and was gifted her new lungs. We are fortunate to have met Fiona and her beautiful family and to be able to share the story of her journey with its many challenges, and now, her new chapter!
Life Pre-Double Lung Transplant
How old were you when you were diagnosed with CF?
I wasn’t diagnosed until I was 12 years old. I was initially diagnosed with asthma and was considered one of ‘those sickly kids’. When I was 12 I had a severe attack of cholecystitis – gall stones and a badly diseased gall bladder. My chest was also presenting quite badly. So, with my sister having CF, it was finally decided I should be tested further. It turns out I had bronchiectasis and pseudomonas. It was around this same time the CF gene was discovered and gene mapping started, so that’s how I was diagnosed.
How was life as a teenager and as a young adult?
From when I was diagnosed I was in hospital at least twice a year. It was pretty tough being diagnosed as a 12-year-old. I really didn’t like all the treatment; the physio, the nebulisers and the tablets (although I was very aware of them because of my sister). The household was chaotic in the mornings, fitting treatment in for both of us plus the usual business of family life.
I had a lot of infections in Year 11 and Year 12. I was in and out of hospital five or six times each year. This was a difficult time, but fortunately, I went to Perth Modern School, just across from Princess Margaret Hospital, so I could still get to some lessons.
When did your health really start to decline?
I managed fairly well after my rough patch as a teenager. My partner and I always had our own business, so I was able to fit in admissions and intravenous (IV) antibiotics quite well. I was on IV antibiotics two to four times a year. I started to get sicker around 2013 when I was about 35 years old. It was during this time that we had just entered into a surrogacy agreement and we were pregnant! In some ways this was a positive because if I had been sicker earlier we wouldn’t have considered surrogacy at all. However, it was difficult getting sicker with a new baby.
When was the prospect of a lung transplant first discussed and what was your reaction?
During the time we were ‘pregnant’ (through surrogacy) was when I first met the transplant team – although it was an early referral. I knew then it was just a matter of time. I knew lots of people that had had lung transplants, including my sister, who was transplanted 12 years earlier. I felt I was fairly knowledgeable about the process, but it was also really scary knowing how much sicker I would have to get before I was listed.
For how long were you listed before you received ‘the call’?
The path to finally getting listed was a long one. I was living in Geraldton and we needed to sell our business and our house and move to Perth before I could be listed. It was all a very stressful process, especially when I was so sick. When I did move to Perth, I was listed for three months before I got the call!
Life Post-Double Lung Transplant
What were your initial thoughts when you woke up after your surgery?
I was pretty high on pain medication, but I definitely wanted that breathing tube out!!! Apart from that I remember thinking, “thank goodness that’s over and that now my three-year-old son, Theo, won’t remember me being sick all the time”. The other thing I thought of immediately was the donor and their family. They were possibly sitting here in the Intensive Care Unit just a couple of days ago and now they’ve saved my life. It’s hard to get your head around.
Was life very different from the start or did it take some time to feel the benefits of your new lungs?
I had a lot of complications post-transplant. The recovery was gradual and very difficult, but the big difference was, once I got better this time that was it, it was for good!! I wasn’t going to get better and then get sick again a few weeks later. My new lungs were pretty good after a few setbacks – the rest of my body was more of a challenge and took it’s time to catch up.
What are some of the things you can do now that you weren’t able to do 12 months ago?
EVERYTHING!! The biggest benefit is I am back in my own home. We had had to move back in with my parents – I was just too sick to look after a household and my family. I couldn’t even read a full book to my little boy. Now I can play with him and do the school drop-offs and pick-ups. Every single thing was so difficult before and now I just do things with ease.
How would you describe your life now?
My life now is so full. Before I was just existing. Now I have a future, I have plans, even if it’s just to go down to the shops for the afternoon. I just can’t wait to experience each day of my life.
What would you say to someone who is currently indecisive about the prospect of a double lung transplant if it was offered to them?
Without a transplant I would have died. My life was so difficult, there really wasn’t any choice. I wanted the chance to be here for my son, my husband and my family. Without pain there is no gain. I had a huge amount of pain, but the gain is a million times greater. To experience life like this after so many years like that…. it’s AMAZING!
You just have to be prepared, ready to work hard, do what the team expect of you (even if you think you don’t need to) and try and have a positive attitude. It’s worth it!
Article from RED Magazine, Edition 3 2018.