Twenty years ago, when I was in my mid twenties, I was diagnosed with a rare lung disease called LAM (lymphangioleiomyomatosis), which attacks the lungs and slowly destroys them.
Within a decade, I went from being fit and healthy to someone whose only chance of survival was a lung transplant. I deteriorated gradually; as the disease progressed I got increasingly breathless until every breath was a struggle. By then, my world had shrunk to the four walls of my flat. I was being slowly suffocated, which was terrifying.
It was incredibly difficult for my family, dealing with the fact that a transplant might not come in time to save my life.
I went onto the list for a lung transplant in July 2003 and got my transplant eight months later, in February 2004. Waiting was the worst part. I realised how physically ill I was and that there was a very real chance that I’d die before I got the transplant.
The emotional side of waiting was just as difficult as the physical side. You don’t always get a transplant the first time you get called; there are lots of false alarms.
You can go all the way to hospital, be prepped for the operation and then told the organ isn’t available, or there’s someone ahead of you.
It was also incredibly difficult for my family, dealing with the fact that a transplant might not come in time to save my life.
The lung transplant I received in 2004 took me from being close to death to living again and, as I recovered, back to a normal life again: working, doing my own shopping, dressing myself and spending time with family and friends.
My transplant was the most amazing gift, and I have nothing but gratitude for my donor family and the medical team.
But I think that the question that donor families have to deal with – whether their loved one would have wanted to donate their organs – is asked at the wrong time, usually when they are coming to terms with and grieving over the death of someone close to them.
That’s why I think the opt-out system would be much better, because the decision about whether to donate your organs after death can then be made in a considered way, when you’ve got time to think about it and discuss it properly with your family.