A stranger saved my life
Andy was diagnosed with idiopathic pulmonary fibrosis (IPF). After 12 years of treatment, he got a lung transplant that saved his life.
Six months ago, a stranger saved my life. But he didn’t pull me from a burning building or stop me from stepping into the road without looking both ways.
He saved me by carrying a donor card and making his family aware of his brave decision.
I now have both of his lungs rising and falling in my chest.
I don’t know who this hero is. But what I do know, is that without his bravery, my wife would be a widow, my children would be without a father and my grandchildren would be without their ‘Poppy’. And I certainly wouldn’t be at my desk writing this - with tears already welling up in my eyes at the thought of what might have been.
The long journey to diagnosis
In 2006, I noticed problems with my breathing. I went to my GP, who said it was nothing to be concerned about. I was still playing badminton, squash, golf and football. I just thought I was slowing down as I was then 42.
The following year my family came down with flu, and so did I. Their coughs and sneezes went but my cough remained. Back to my GP I went.
After a couple of courses of antibiotics and X-rays, she referred me to hospital. Then started a 6-year journey to find out what was wrong with me.
All this time, I had a horrible cough which was pretty much 24/7. From 2007 to 2010, I practically had no voice. I got myself referred to a voice therapist and after 6 months of treatment taught myself to talk again.
My breathlessness was getting worse and the results of my lung function tests were in decline. in 2006 my lung function was 60% of what a normal person should have by my age. By 2012, it was down to 45%.
I did some research of my own and saw a cough specialist who in turn referred me to a respiratory consultant. That was in June 2013. He told me I had idiopathic pulmonary fibrosis (IPF).
Getting treatment and never giving up
I was only 49. My career was a distant memory and my salary was a third of what it was, bringing inevitable financial problems. I couldn’t play sports and I couldn’t pick up my 2 grandchildren.
According to my consultant, I’d need a lung transplant within 2-3 years.
We’d tried all sorts of treatments during the previous 7 years, and none of them had been able to stop my lung function decline – by this point, it was down to 34%. My consultant said there was anecdotal evidence that chemotherapy could slow the rate of progression. But his colleagues weren’t so convinced, and it took another 18 months to get it agreed and arranged.
Fast forward 5 years and I was still holding on. I had to plan each day carefully and had been on oxygen therapy for 4 years. By now my lung function was down to 21%.
My consultant told me that without a lung transplant I should enjoy Christmas as it was likely to be my last. I was 54. I wouldn’t get to see my grandchildren grow up. I wouldn’t be able to walk my daughter down the aisle and I was pretty sure I wouldn’t see my beloved Villa back in the Premier League.
Getting the news we’d been waiting for
Lung transplants aren’t suitable for everyone. The transplant team have to consider whether the benefits of having the transplant outweigh the risks of the operation.
But on 18 September 2018 at 01:20 in the morning, I received the call saying they may have suitable lungs for me if I still wanted to go through with the transplant. I was there within half an hour.
The lungs went in and after 6 weeks in hospital, I was allowed home.
Thanks to my organ donor, I can plan for the future
Now, I’m looking forward to many more Christmases in the future. I cherish every day, I make plans and participate in family life. I’m working to get fitter and am even taking part in the Transplant Games. I’m also planning to learn to dance so that after I’ve walked my daughter down the aisle, I can show her what a real dancer looks like!
Alongside all these aspirations, I hope to persuade as many people as possible to register their decision with the organ donation register. I want to honour the sacrifice and bravery of my donor and his family by doing whatever I can to support organ donation and explain how donating an organ changes lives like mine.
Post-script: living with lockdown
This story so far takes us to March 2019.
Within 2 weeks of writing it, my 89 year old mother suddenly became ill and passed away and my best mate of 40 years had almost succumbed to a stroke. However, thanks to my unknown saviour my mother did not have to witness the passing of her ‘curly-headed baby’.
I had to come to terms with these two major setbacks and get back to life in my brave new world.
Villa were promoted back to the Premier League. We celebrated what would have been Mom’s 90th birthday. I competed in the British Transplant Games where I came away with many happy new memories and a bronze medal in the men’s badminton.
In September, we had a huge family party to celebrate my 1-year lung-iversary.
In December, we welcomed our fifth grandchild, Ada, into the family.
I had put lots of preparation in to 2020.
Things started well
Things started well when I received a special recognition award from the CEO of Birmingham City Council.
In March I was going to take part in a transplant sport football tournament, in April I was going to attend some IPF conferences (one in Poland), in June I was going to Spain for the European Heart and Lung Games, In July I was going to participate in a fundraising abseil down the Holte End at Villa Park followed by the British Transplant Games and finally, in August it was to be my daughter’s wedding.
I thought ‘that’s not a bad way to celebrate the wonderful gift of a second chance at life’.
Everything was cancelled
And then COVID struck…
Everything was cancelled.
I couldn’t hug my children, I couldn’t hug my grandchildren, I couldn’t hug my friends and family, I wasn’t able to leave the house and I was constantly worried about them all. But like my approach to the IPF and the transplant, I dealt with it calmly and logically. There was no point wringing my hands and saying, ‘How could this happen after all I’d already endured?’
COVID is indiscriminate.
I turned the back bedroom into an office with a treadmill.
My employers, Birmingham City Council, continue to be absolutely brilliant and we worked out how we could all support the invaluable work that the social workers were doing under such exceptional circumstances from our homes.
I received the sad news that two of my friends had lost their lives to COVID.
Like everyone else we embraced technology and had regular WhatsApp family video calls with each part of the family.
And now we start to come to terms with the new ’normal’. The last couple of weeks, we’ve ventured out a little more armed with masks, bottles of hand sanitiser and keeping aware of the constantly changing advice and rules.
So, my brave new world has to be modified, but in the words of Gunny Highway (one of my favourite characters, from the movie Heartbreak Ridge) we need to ‘adapt, overcome, improvise,’ during the COVID Clusterfest.
Today is 6 September and my wife and I are celebrating 34 years of marriage. Exactly 2 years ago we were discussing over dinner at Frankie and Bennies that it may be our last and that I’d already planned my funeral so that Jill and the children didn’t have to worry about it when the time came.
The waitress came over to us to take our order and when she saw us, holding hands with tears upon our cheeks she said, ‘I’ll give you a few minutes more to look at the menu’.
I don’t know what she must have thought.
Never give up
However, all of that has changed and yes, my plans have been put back, but I’m still here to make them. All thanks to the bravery of my unknown saviour and his family.
Until we find a workable vaccine we must be extra vigilant, thoughtful of others and maintain a positive mental attitude. From my experience with the NHS we have some of the greatest researchers, clinicians and nursing staff in the world and I’m sure that in the not too distant future they will find some answers.
So until that day arrives we never give up.
This Organ Donation Week, take some time to understand the law around organ donation. The law has changed to help save more people's lives, and you can help too.