My name is Louisa Walsh and I'm the new membership officer for the Heart and Lung Transplant Trust of Victoria. I am 30 and I have cystic fibrosis. In 2010, on September 11th (an easy anniversary date to remember) I had a double lung transplant.
My road to transplant was an interesting one, to say the least. Having been diagnosed with CF since I was 3 months old, I've known for a long time that transplant was probably going to be part of my future. If you had asked me on Christmas Day 2009 when that would be, I would have probably said that it was something I would have to think about in 5 years or so. Unfortunately, on Boxing Day 2009, and only 2 days after I'd moved in with my partner Sean, I started to get really sick.
I ended up with an acute infection of something (speculation still abounds) which led to over 3 months on intravenous antibiotics and a halving of my existing lung function. I went from being a relatively stable CF-er to signing on to the transplant waiting list within just a few months. The initial conversations I had with the transplant team were terrifying, but I can honestly say that by the time I signed the paperwork the decision was made in my mind, and there was no doubt. By that time walking from one end of the house to another was a chore, and if I tried to cook (which I love) I would have to stop and take rests. For a woman who had always been active, worked hard and enjoyed life to the full despite the difficulties CF sometimes brought, being so unwell was very difficult, disheartening and scary.
When I signed on the wait list I was given an estimate of a 12-18 month wait before lungs would be available. I dreaded this wait, and wondered how I would manage home, work and life with Sean when I was so ill and dependent. So, I thought, 'bugger this!' and developed a pulmonary embolism - a blood clot in my lungs. It was a risky strategy that landed me back in hospital, with sky-high carbon dioxide levels, delusions, admissions to ICU, and non-invasive ventilation. It also bumped me up the transplant list.
My family and I can joke about that time now, but it was scary, and worse for my family than for me, as a lot of the crucial times I don't remember. I don't remember Mum, Dad, Sean and my best friend Julie being told that I would die the next day. I don't remember being told that a suitable match had come in the nick of time. I don't remember going in to theatre. And I didn't get the chance to wonder if the transplant was the right decision. For me, and my family, at that time, it was the only decision.
The next thing I do remember is waking up in ICU and being intubated and barely being able to move because I'd become so weak. I also remember asking Sean to text my cousin a happy birthday - because I'd woken up on September 13th. From that first waking up it was all go, and I shuffled slowly out of hospital 19 days later - feeling very daunted but also very excited - to start my rehab.
It's now just over a year later, and already I've done so much. I'm back at my job that I love with Hepatitis Victoria - teaching people with hepatitis C how to manage having a chronic disease. I also wanted to spend some of my time volunteering - so I got involved with the HLTTV and also with Traveller's Aid. I've gone back to badminton - which I haven't played since high school, got back on my bike (I did the 40km Melbourne Summer Cycle 5 months after my transplant), hit the pool a couple of times, did bootcamp through my local gym, and got back into dancing. Next year I'm looking at becoming a guide leader, competing in the Transplant Games and going back to circus skills classes!
Above all, there are three things that this experience has given me:
- an appreciation for how hard life was for years and years before transplant - and I had just grown to accept that as normal. This 'new normal' makes me marvel at myself for getting on with things so well before the operation, and motivates me to jam-pack my life now I can.
- an appreciation for the love and dedication of my family, partner and friends, who were literally and figuratively by my side during the darkest time. It was them who motivated me, and physically helped me, to keep going so I could make it to transplant and enjoy this new life.
- an unerring gratitude to my donor and their family, for making such a generous decision at such a difficult time. I sometimes think of the dual paths that fate dealt my donor and I, and like to imagine that as the last few grains ran out of their hourglass, they used that time to turn mine back over again. It is a beautiful gift that all organ recipients have been given and we should never forget that.
