BREATH OF LIFE
Journalist Mark Allen was travelling the world when he was struck down by pneumonia and fever. He is now waiting for a life-saving double lung transplant and battling Cystic Fibrosis. He tells Mercury readers what its like waiting for that phone call.
Two years ago I was walking along the Great Wall of China, running about teaching in Korea… now I cannot walk more than a few feet and am attached to an oxygen machine 24-hours-a-day.
I’m 32-years-old and one of thousands of people nationwide waiting for a transplant. I need a new pair of lungs to prevent my life coming to a prematurely short end in a matter of months.
I am a non-smoker who was fit and healthy. I was travelling around the world teaching English as a break from a career as a journalist and enjoying life to the full.
I loved going to gigs, climbed Ben Nevis and played for a local cricket team, a normal 20-something with itchy feet, especially after a night clubbing in Wolverhampton!
I celebrated the millennium in Sydney and went walking in the Far East I was as independent as a person can be.
Now I am too exhausted to make my own meals or speak on the phone for long. I have daily physiotherapy, have nebuliser sessions four-times-a-day and often need IV antibiotics.
Once a reporter on a good income I’m now living with relatives on £10 a day.
Every week my condition deteriorates, as does my confidence. It is a battle against time.
So what happened? Well I always suffered from genetic killer Cystic Fibrosis - but with a regime of exercise and antibiotics had kept it under control, most of my friends were unaware I had it.
A bout of pneumonia and a fever caught while teaching in a South Korean school left me fighting for my life in a hospital, run by nuns - an experience I would not wish on anyone.
After being flown home doctors discovered doctors in Korea had damaged my trachea, a problem which 25 operations later is not corrected.
A bout of chicken pox and two collapsed lungs added into the equation and I was struggling to breathe on my own and coughing up horrible phlegm at every opportunity.
I recently went to Newcastle-upon-Tyne for a nerve-racking week to check all my other organs. If there was anything wrong with my liver or kidneys I could not go on the list. Luckily my heart, cholesterol, blood pressure and all the other indicators were normal.
So I have an overnight bag and a case packed and ready in the hall. If I get the call I will be picked up in minutes whisked up to Newcastle-upon-Tyne by ambulance for the operation.
They will put me to sleep (thank God!) and clamp off my heart, break my ribs and take out my old lungs and put the healthy pair in.
If everything goes well I will be awake within a day, out of bed in two and walking within a week. It will then be a tough regime of exercise and testing for six weeks, to spot any signs of
rejection. During this time I will stay on the ward and then to a flat in Newcastle.
I will be on anti-rejection drugs for the rest of my life, then numb the white cells enough to prevent my body from rejecting the lungs but not enough to leave me open to cancer and the dozens of other ailment that a high white cell count prevents.
Long term the average life expectancy for a double lung-transplant patient is five years. But that includes those who have only lived five years because they only had the op five years ago.
I am in regular e-mail contact with a man, just slightly older than myself who had a similar operation four years ago and he is well. It is great to be able to ask the non-medical questions. When did he first come off oxygen? What did it feel like?
But when I lie in bed listening to the silence. That is when the fears trip in. At 32-years-old when my friends are getting married, buying houses, getting pay rises, I am living with family. Waiting.
I can’t even get help from the Benefits Agency because I had been out of the country for more than two years. Despite paying taxes all my life. I am unable to claim Incapacity Benefit or Jobseekers Allowance. Figure that one out!
It seems as my body has abandoned me the Government has as well! It kind of adds insult to injury doesn’t it?
But what keeps me going is how life will be different after the transplant. Just having the energy to make my own dinner or walk to the pub will be fantastic. To start work will be amazing!
Some friends recently took my to the NEC (I was covering the Duran Duran gig for Channel 4’s teletext). My oxygen machine leaked and I had to turn it right down so I would have enough to see me through the gig and get me home. I was almost unconscious by the time I got home.
Such experiences would be confined to the past. And wouldn’t that be a wonderful thing.
If things don’t go to plan, the best way of looking at it is I have done so much in my life and have those to look back on.
I have interviewed people as diverse as Tony Blair, Michael Howard, Julian Clary, Roy Castle and Meatloaf, worked in more countries than many people have been to, including reporting from Northern Ireland and Tunisia, and made many friends.
I would love to have many more experiences ahead of me than behind me. But t is out of my hands.If anyone is reading this who isn’t a registered organ donor please think again.
This is something you can do for free that could save many lives after you have passed away. You may even save mine!
Since this article was written Mark was rushed away by ambulance three time after getting a call from transplant co-ordinators, however each time the lungs were faulty and the operation was cancelled. His father also died of a heart attack.
www.uktransplant.org.uk
www.CFTrust.org.uk
(Editor: many “healthy me” photos available on my website others including more recent ones available on request.)
http://groups.msn.com/marksucks