I’VE ALWAYS HAD I’ve always had a positive attitude towards life and have been lucky enough to keep that with me. When I was first diagnosed with kidney disease in 1988, almost 30 years ago, I was understandably shocked and it took a while to get my head around it.
I have a kidney disease called membranous nephropathy which affects the part of my kidney that filters fluids and waste. For three years I was in and out of hospital getting different tests and trying different treatments while my doctors tried to slow down the rate of deterioration of my kidneys. But nothing worked and gradually the function of my kidney deteriorated and in 1991, it failed completely.
I was put on the kidney transplant list and started dialysis immediately. I was 19 at the time and studying agriculture so I bought a car and travelled up to Dublin every Monday, Wednesday and Fridays for four hours of dialysis each night in Beaumont Hospital.
In May 1992, I got the call to say they had a kidney for me and I drove up during the night and was transplanted the next morning. I woke up after my surgery and it was absolutely wonderful. I was very lucky, there were no complications and my new kidney worked well for about four or five years.
‘Life was good for those few years’
You realise how lucky you are as when you’re in and out of hospitals you see a lot of different people and different cases going through a difficult time. Sometimes transplants don’t work, but hope is always there. Life was good for those years – I met my wife, got married and we were building a house so it was a good time for us all.
In 1997 we realised there was some deterioration and my kidney was starting to fail. My disease was lying dormant but it came back and started attacking my new kidney. I was put back on dialysis and onto the transplant list. Around Christmas of 1999, I got a call for the new transplant but unfortunately this time it didn’t go so well.
I got fluid on the lungs and ended up in ICU; my wife was told I had six hours to eight weeks.
But thanks to the dedicated staff at Beaumont I got through it and eight weeks later I was out of hospital and starting a new job as Chief Livestock Supervisor at the UCD Lyons Estate. The kidney worked well for a short while but just 12 months later we knew it was going to fail, again due to my disease.
You need a very positive attitude to deal with these things, and you do get resilient, I treat life like a pendulum scales. You put all the bad stuff on one side, then the positives on the other side, and you will find the positive almost always outweighs the negative. If you get bogged down by the negatives and the ‘why me’ it’s a slow road to nowhere.
A living donor
When that kidney failed I was having lots of complications with dialysis, high blood pressure and I developed heart failure. My family had suggested a living donor but I had always pushed it to the side as I was worried something might go wrong.
Unbeknownst to me my sister did a test to check our compatibility and was a 100% match. I was transplanted again in February 2006 and two weeks later we were both at home doing well.
A year later it began to fail again and this time it was even more disappointing as she had gone through the ordeal of it all. We had been so hopeful as it was a 100% match we thought it would last, even just to get 10 years out of it, so there was a lot of guilt.
Was it worth my sister going through all of that for the sake of the kidney working for just 12 months? Why didn’t I just stay on dialysis? But these are the cards you’re dealt.
In September 2009 I was back to hospital dialysis and I heard rumours of dialysis at home. I was very interested so when a programme was launched in February 2010 I went into Beaumont for four weeks training – after 20 years hanging around hospitals and dialysis I was pretty sure I could do it. I got the equipment set up in our house and a nurse came out every second day for a week, just to make sure I knew what I was doing.
Initially I was on four hours of dialysis every second night, it was marvellous not having to travel to the hospital. At that time my son was only two so it meant I could see more of him and we’d sit and watch cartoons while I did my dialysis.
Life on dialysis
After 18 months I went onto a nocturnal dialysis regime. Every second night I do eight hours of dialysis while sleeping which means it frees up even more of my spare time. I’m at a point now where I’m as good as I’ve ever been and feel better on a nocturnal regime than when I had the transplants – my standard of health is higher than ever. When I had the various transplants I was on heavy medication for high blood pressure but since going on nocturnal dialysis I’ve had no high blood pressure at all.
I’m quite happy with where I am today but I must admit I do wish I could have done my treatment at home earlier. With hospital treatment you are slotted into a system and a time slot where you must present yourself, often getting the least amount of dialysis, not the optimum.
These days I can do whatever I want in the evenings, which is great. My son is eight, so we go to football and do all the normal things families do each day. I head up to bed, take about 40 minutes to hook up the machine, and do my dialysis during the night.
My prognosis is good, my blood pressure is back to normal, I’m on vitamins rather than medication and I haven’t been hospitalised in six years. This is my life. I don’t waste my time thinking ‘why me’, I just get on with it. I know everyone has a different way of dealing with these things but I hope my story can show people that there are options for people living with kidney disease.
Stephen Lott is a the Chief Livestock Officer for University College Dublin from County Kildare.
The Irish Kidney Association Organ Donor Awareness Week takes place from 2-9 April. Organ Donor Cards can also be obtained by phoning the Irish Kidney Association LoCall 1890 543639 or Freetext the word DONOR to 50050. Visit website www.ika.ie It is now possible to store an organ donor card, the ‘ecard’ on Smart mobile phones. Simply search for ‘Donor ECard’ at the IPhone Store or Android Market Place.
Both of Myles's kidneys have been removed, and he receives dialysis every night: https://t.co/Mb6CkDW9Sr #odaw2016https://t.co/PLZahIjFEb
— TheJournal.ie (@thejournal_ie) April 3, 2016
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