UP UNTIL 2004, I was in perfect health. I was 54, I had a thriving career as a management consultant. And then I got a pain in my right leg – when I walked any distance, I would get a pain. So I went to the GP and had a referral, and I was told that it was a circulation problem. I went in and had an operation, and it was successful. I was eight or nine days in the hospital and I was discharged. I walked out of the hospital as I walked into it.

Five days after that, I got this burning sensation in the tip of my toes. The best way I could describe it is would be like holding your hand over a naked flame. In seconds, it travelled right up the legs, up through the chest and to the top of the head – you could feel it going up. The last thing I remember is that the pain was so severe that I actually dug my fingernails into the wall. My wife called the doctor and I was admitted to casualty, and when I was brought in, I was fighting for my life. My organs had begun to close down. My family was basically advised not to go anywhere, that I was extremely ill and they didn’t expect me to live.

What had happened was that I had contracted an MRSA bloodstream infection, during the initial surgery. MRSA had damaged all the vein grafts that were originally put into my leg, they were all contaminated. So in order to save my life, they carried out what they call an aorto-bifemoral graft. Now, from just below my neck, I have an about a three-foot length of plastic tubing on each side, coming out of my chest and carrying blood down the outside of my ribcage underneath the skin to the legs. The best way I could describe myself at that stage would be like a massive zipper – because I was opened from the top of the chest right down to my toes.

What really saved my life was the fact that I was healthy, going into hospital. I was 54 and I had never been sick a day in my life. But not everybody is so lucky. I died at one point in the hospital, but they brought me back. And if I had died at that time, all it would have been is another family tragedy, and nobody to blame. So when I’m telling you this, I’m not speaking on behalf of the living, I’m speaking on behalf of the dead.

I was in hospital for five months, then I was discharged. I was nine stone, and I was walking on a Zimmer frame, and walking like somebody who was 92. Because the grafts are prone to clotting, which means another operation, I spent the next two years of my life practically in the back of an ambulance. I’m living in Galway, and when the grafts would clot on me I had two or two and a half hours to get up to the hospital in Dublin. On two occasions I had a motorcycle escort. The last time I went up was New Year’s Eve 2005, and I honestly believed that time that I was going back to die.

‘I just wanted to finish it’

You really had to make a decision, whether you wanted to live or die. I went from being a totally healthy human being – I had a career, I had a life. I travelled through the UK, Japan, Ireland. But that all ended in 2004 – the life that I knew finished. I had to learn how to walk again. I started on the Zimmer frame and progressed on to two walking sticks, and I fell on my arse in the garden more times than I can remember. You were so close to giving up and just saying ‘Fuck it’. I wasn’t able to drive, obviously. But I had the car outside in the drive – and when I couldn’t walk and I couldn’t sit and I couldn’t lie, I’d just look out the window and say ‘Right, I’m going to learn how to drive that car again. And then it’s going to take me somewhere that I’m never coming back from.’ That was my objective – to be able to get up to walk, to just get into the car and finish it. But thank God I didn’t do it.

Now, my mobility isn’t great. If I get about 200 yards, I have to stop. So I’m back to being worse than I was in 2004, before I went into hospital. But when I did start to recover, I really started to question why it happened. I discovered that as far back as 1995, there were guidelines produced for the control of MRSA in hospitals and nursing homes – but because the hospitals were in such disarray at the time, they were never implemented.

I’m now a member of the MRSA and Families Network. We went to meet the previous Minister for Health, Mary Harney, and forced the issue on MRSA. And in 2005 she produced national guidelines for MRSA – very similar to the ones that were produced in 1995. In 2008 there was a cross-border initiative for the management and control of MRSA. And in 2009 up came the national guidelines, which were to be implemented in every hospital and nursing home in the country. It’s now 2011, and those national standards are not fully complied with. A new variant of MRSA was discovered in Dublin hospitals this month.

What we propose is the appointment of a national director for infection control. That has to be done in this country, if there is to be real change. There has to be somebody who is responsible and accountable. And the second thing that has to be done is that all these guidelines must be put on a statutory basis – because it’s one person down in a hospital in Galway with their interpretation of the guidelines, and someone else in Dublin with a totally different interpretation. And morale in the hospitals is on the floor. We have written to the secretary of the new Minister for Health, Dr James Reilly, and we are seeking a meeting with him. And we will be asking for those two things. That’s the action that needs to happen, and it is as simple as that.

I am determined to keep this campaign going. It will never end, and I will never let up. Because somebody, somewhere, changed my life forever and walked away.

As told to Michael Freeman. Tony Kavanagh is a member of the MRSA and Families Network.