MY PHONE ringtone is really dull. I have had it like that for I don’t know how long. I must have heard it ring hundreds, if not thousands, of times.
My husband calling to tell me when he will be home, my mum phoning for a quick chat, or my best friend phoning to tell me about work. Like everyone else, my phone rings that often that sometimes you forget who you have spoken to and what you have said.
But I’ll never forget the phone call that I received at eight minutes past three in the early morning of 11 August, 2011. The voice on the end of the line, despite the time, was that of a really friendly, reassuring, Geordie. This was the phonecall that changed my life. No, it was the phonecall that saved my life.
I have cystic fibrosis. I was diagnosed at the age of six months at Raigmore Hospital, my local hospital in Inverness. My health was relatively good during my childhood and teenage years. CF is one of those diseases that hits you in waves. Some days you can be absolutely fine, then the next you are floored with the most insufferable chest infection. In those early years, I was lucky. I had more good days than bad.
I moved to Glasgow after school to go to university. The first two years were great. I did everything that a student does. I went out a lot, I forced myself to go to early morning lectures and, generally, I had an amazing time. However, the final two years were a real change. The bad days started to win the battle.
It was the small things at first. I found myself unable to go out at night and be able to get up for those early morning lectures. Then I found myself getting tired, really tired, walking the short distance to the campus. Finally, I was just pretty much exhausted all the time.
Things came to a head in my final year. I had really struggled those last few months, but finally managed to get my dissertation finished. Despite the struggles I was hugely proud of getting it finished. My family were over the moon. Mum was already looking forward to buying a hat for the graduation ceremony.
But then my lung collapsed.
It’s hard to describe what that feels like. One minute it is working normally – or as normally as someone who has CF lungs can work – and the next you can hardly catch a breath and are in huge amounts of pain. It was terrifying. I was rushed to Gartnavel hospital, where the treatment I received was incredible. I know that everyone says it, but it is true: nurses are angels. Slowly and surely, they got me back on my feet. It took me over a week to recover from the collapse, but eventually I was allowed to continue recovering at home.
The incident had taken a terrible toll on my health, though. I always thought that a transplant would become an option at some point in my life, I was just shocked that it was coming so early. When the doctor told me that I needed new lungs, I thought “this can’t be right. I’m only 22”.
The Freeman Hospital in Newcastle is pretty much one of the best places in the world for lung transplants. My consultant in Glasgow told me that when my time for a transplant came, the operation would take place at the Freeman’s as it was the best – and also there was nowhere in Scotland that could do it.
The process of being assessed to see if I was a suitable candidate for a transplant was a rigorous one. They needed to be sure that I was absolutely ready, mentally and physically to go through with the procedure, as the operation itself is so risky. I was given an 80 per cent chance of survival.
Eighty per cent seems like pretty good odds for most situations. However, when the other 20 per cent is the difference between living and dying, it doesn’t seem that way. Having to sign a consent form for an operation that I knew brought with it a one-in-five chance that I would die was an enormous decision.
The transplant co-ordinator at the Freeman’s who looked after me was amazing. A really lovely, bubbly Geordie, she did what all good nurses do. She took me through what was going to happen and was realistic and honest about what it all meant. Two of my friends are going through this process just now. I am glad that they have her to help them.
Life on the transplant waiting list is tough. It is the worst type of waiting game. You know that the only way that you get a result is if someone else dies. Last year in the UK there were 7,636 people on the transplant list waiting for an organ, and, sadly, around 500 of them died before they could get a life-saving donation.
I was fortunate. For me, the waiting lasted 18 months. This is, in transplant terms, a relatively short period – but it was a terrible time. My health deteriorated to such an extent that I ended up in a wheelchair. I had no energy, I was on oxygen 24 hours a day and I had to do naso-gastric feeding overnight just to keep my weight up. It was hell on earth.
And then the phone rang.
My transplant took place on 11 August, 2011. The surgeon who operated on me in Newcastle was Mr Pillay. He gave me new lungs. He has given three other young women from Glasgow like myself new lungs. He gave all of us a chance of living, he gave all of us a new life. Every day that I spend with my husband, my family and my friends I owe to my donor, his or her family, and the team in Newcastle.
I’m now back on my feet again. I still have the odd bump in the road and I’ve been admitted to Newcastle for treatment three times since my transplant. But the good days are winning the battle again.
Thankfully, most of us are in the position where we can take the NHS for granted. It is always there but, hopefully, we will rarely need it. I’ve never had that luxury. The NHS has been a fixture of my life since the day I was born. We can have the comfort of knowing in the back of our minds that there are specialist centres around the UK dealing with the most serious of problems, but it is only when you need them that you understand how vital that network is.
This month, I decided that I was going to volunteer with the Better Together campaign. I’ve never been involved in politics before and I don’t think of myself as very political. But I know that my experience, my story, is something that has to be a part of this debate. The NHS doesn’t recognise borders, it recognises sick people. I don’t want that to change.
What we have now is the ideal situation. We have an NHS in Scotland that is delivering world-class treatment to thousands of people across the country. But we also have specialist centres like the one I attended. The Freeman in Newcastle is the dedicated lung transplant centre for Scotland, Northern Ireland and the north of England. It would, of course, be possible to set up a transplant centre in Scotland, but it would not be possible to replicate the expertise developed through the large number of transplants performed over decades.
The team in Newcastle don’t do transplants occasionally, it is their day job, they are doing them every week. Specialist centres – like Freeman’s in Newcastle – are available to everyone, whether you are from Scotland, England, Wales or Northern Ireland.
I don’t want to have to rely on cross-Border agreements to get the care that I need. I don’t want the people who are sitting on the transplant list right now to have to worry about anything other than getting the treatment that will give them back their lives.
When the phone call comes, as it did for me in the early hours of the morning, you don’t hear an accent. You hear the voice of the person who is giving you the best news of all. You hear the voice that is saving your life.
• You can sign up to be an organ donor at www.organdonation.nhs.uk