Belfast Telegraph

'I can live for the first time thanks to a kidney donor'

By Victoria O'Hara

William Johnston (47) from Bangor waited 16 years for a kidney, spending thousands of hours on dialysis. He went through the agony of receiving a new organ only for it to be rejected. Then in January this year he got the call he had been waiting for.

Q. You waited for 16 years for a new kidney but when were you first aware that you had a life-threatening condition?

A. Well, I was born with a kidney defect and I was about a year-and-a-half when I went for tests at the City Hospital and it turned out to be reflux, which meant they were going to have to do an operation but had never done it on somebody so young or so small.

Q. What did the doctors tell your parents?

A. They said I was going to have to get expertise from Great Ormond Street for Sick Children and I would have to undergo an operation. The surgeon said if I come through it I probably won't get through my teens and if I do I will be very weak and underweight.

Q. Was that not frightening to hear for your parents?

A. Yes, but amazingly even by the age of 16 I've never been underweight or weak, the operation was a tremendous success. I went for check-ups and tests every year until I was 16 and the hospital were amazed to see the size of me every year.

Q. Did having the kidney defect affect your childhood or day-to-day routine?

A. No, it didn't affect me at all. I lived a normal childhood, the only thing was getting checked up. At the age of 16 they said just go and do your exams and live a normal life. I thought that was it, I was cured. I went on to play rugby at Bangor Grammar school and won two school cup finals at Ravenhill. It didn't keep me back from rugby or sport, in fact I had forgotten about the whole thing.

Q. So, at what point did things change and you realised that something wasn't right?

A. I did a degree in Portsmouth and after I graduated I went up to London and I got a job there for four or five years. I was playing rugby and was totally fit and healthy. But I noticed that during fitness tests some people started to run pass me. I just thought, this is a bit strange, maybe I had been enjoying myself too much.

Q. How did you then discover you were seriously ill?

A. I was working for the London Borough of Houndslow and the blood donor people came in. You got an hour off work to give blood so of course I said I was quite happy to do it. They did the usual pre-test and said: 'Do you know you are very anaemic – do you ever have kidney problems?'

I said 'yes, when I was a baby but had an operation and I was cured'. But they said 'no, we can't take your blood you are too anaemic' and told me to go straight to my doctor.

Q. Were you beginning to worry?

A. I really wasn't sure what to think. But I went to the GP straight away and wasn't happy.

He sent me off to Charing Cross Hospital and the consultant said: 'Sorry to tell you William, but over so many years your kidneys have been disintegrating and you will have to start dialysis in a couple of years'.

Q. Did what the doctor told you sink in or was it hard to understand?

A. Sitting there it was hard to understand because I hadn't even thought about the prospect and didn't really understand what dialysis was. That was when I was 28 and unfortunately the condition worsened a lot quicker than I thought.

Q. So how long was it when were you given the news you had to start dialysis?

A. I was at home in London a year and the phone rang. It was the hospital, they just said 'we want you to come now, you have to start this afternoon'. I'll never forget that phone call; it was completely out of the blue. The phone call was at 11am and I had to be at the hospital by 2pm.

Q. How did you break the news to your family?

A. I remember ringing my mother up in Northern Ireland and giving her the news. I was in shock, I could hardly speak to her. I was 29 and knew it was a life-changing moment. I didn't realise it was going to be so soon. I thought I would have more time.

Q. What did they tell you about how your life would change?

A. The type of dialysis I was on back then meant I was doing it four times a day. It was a shock. But so many things would change. My diet, how much fluid I could drink, the sports I could do. I was only allowed to drink 700 millilitres of liquid a day. Everything was turned upside down and I had to adjust everything.

Q. You were living in London away from all your family. Did you stay?

A. My mum was a former nurse and she was determined that I wasn't going to be doing dialysis on my own in London – because it was such a big place. She contacted the City Hospital and transferred there within a week. They were able to retrain me and educate me on this type of dialysis.

Q. What was it called and how did it work?

A. You could do it at home and it was called CIPD. It is fluid exchange through your stomach wall. But you have to sit for four hours while it works and do it four times a day. As you can imagine it restricted so much of how you could live your life. That was in 1995. That form is done now. But there is another form which is a machine but is done overnight. You do that seven times a week but gives a bit more freedom.

Q. It must have been hard moving from London within a week and then coming to terms you had to be on dialysis?

A. Oh, it was very difficult because I left my job in London and had to completely re-adjust my life on dialysis. It was a really big shock to me. The only thing that kept me going was that I would be put on the waiting list for a donor.

Q. You did get good news in 1995 that a donor had been found?

A. Yes, I was only on dialysis for six months. In February 1995 I came home and in June I met a girl called Carla, who would be my future wife. She has been on the journey with me. I got the call in September in 1995. We were so naive, we thought it would cure me and we would live our lives happily ever after and would travel and see the world. Little did we know what the future held for us.

Q. When you got the call you must have been elated?

A. I was absolutely ecstatic. I had a beeper so they could always contact you. But I had left it at home and had gone to the swimming pool. I got back and there were two police cars outside and all the neighbours were looking to see what I had been up to. But they had just been looking for me and just said 'you need to get in the car there is a kidney for you.'

Q. What happened when you were taken to the hospital?

A. I didn't have time to think about it. I was taken to the City Hospital on the 11th floor where all the miracles happen. I had my transplant there and I was in for about four weeks.

Q. Did you face any complications?

A. Yes, the transplant never really took – unfortunately I had to go back on dialysis two years later in 1997. I will always be so grateful to that donor and donor family – it was better for the kidney to be removed. Again naively me and my wife thought we would get another transplant quickly.

Q. You then had to change your dialysis again and have it in the hospital.

A. This was in 1999 and I was on it for five years. You get attached to a machine and lie there on your back for four-and-a-half hours, three times a week.

The motto they tell you is 'dialyse to live don't live to dialyse' – you try to do that and live as normal life as possible, but it is so difficult.

They only thing that keeps you going is the hope that a transplant was just round the corner. So every time I would finish a day in the hospital I'd go home and look at the telephone, wishing and hoping that it would ring with the news they have a transplant for me.

Q. Did the phone ever ring again?

A. Between 2000 to 2005 I was called four times for a possible transplant. But they always have two to three people for the one kidney. So they do the tests and there is a chance you are called and it goes to the other person. But you still have to go through all the tests that take six or seven hours.

Q. How hard is that to go through?

A. You are there thinking 'is this my kidney?' Is this when my life is going to be transformed and get my life back? On three occasions they came back and said sorry, it's not your kidney, or it's not a match. You try to be positive and say I'm glad it is going to someone else but you have to go home devastated.

Q. How do you pick yourself up after that?

A. You've no choice, it's either that or just give up. If you don't do dialysis you will die. You just live in hope. The third or fourth time after being told I went back to the unit. I had already said goodbye to the nurses and other patients. I thought this has to be my kidney I didn't think I'd have to go back.

Q. But you had to go back to the unit?

A. Yes, the next day I went back and looked around and thought 'I can't continue coming here every other day for four hours and lie on my back'. I managed to get home dialysis – like a mini-theatre in your home which was great. I was given responsibility for my freedom again. You are in control, you can do it when suits you as long as you do the hours the doctor tells you.

Q. When you are up on the 11th floor in the City Hospital is there a sense of comaradarie among patients and staff?

A. Very much so – especially now with the live kidney donors who are there. Every person who is there has got the most wonderful story. In one of the rooms there was a mother and son. The mother was giving the kidney to the son. The 11th floor is an amazing place to be.

Q. How important are the staff on the 11th floor in supporting you and other patients through the journey of needing an organ transplant?

A. Back in 1995 there was just one surgeon and now they have four. All the surgeons and consultants – it is just like a big family. It's amazing to meet these surgeons that save lives every day of the year and that they are so down to earth. We are so lucky in Northern Ireland to have the team in Belfast City Hospital – they are a team to be proud of. You can tell it isn't just a job – they are passionate about it.

Q. Had you begun to give up hope at any stage?

A. Yes, I went through a bout of depression about a year ago. Because I thought a transplant would never come and be on dialysis for the rest of my life. You can't stay on it forever – your body can only take so much.

Q. Your family and friends did try to become live donors?

A. Yes, from 2005 the live donor programme got a lot of momentum. My mother, my brother, sister and lots of other friends and family members put themselves forward for live donorship but always came back that they weren't compatible. That was almost like being called for a kidney that you thought was guaranteed for you. You can only take so many knockbacks. About two years ago I started to realise I would be on dialysis for the rest of my life and that might not be many more years to come. That's why I got a bout of depression.

Q. At what point did things change?

A. I talked to consultant who said there were new drugs coming on to the market – that was June last year. She said she really believed she could get me a kidney by the end of the year. I have so much faith in those doctors and that team. But nothing came and had to dialyse over Christmas and New Year. That is the hardest part. There is no relief; it just has to be done. Even when people are celebrating you have to watch what you are eating and drinking..

Q. When did you finally get the call?

A. It was in January and I was in Belfast organising a charity event to abseil down the Europa and the telephone went off. They said, 'Is that William Johnston?' I said yes. They said they might have a kidney for me. I just paused. I said 'are you sure you have the right William Johnston?' I was just in shock.

Q. Who was with you when you got the call?

A. I was with a friend called Steve Carter. His wife died during childbirth. Afterwards he discussed the moment I took the call. To him it was a wonderful occasion because he actually got to see in real life the reaction is from the recipient when they get that call. He got to see how the five people would have reacted who got the calls after his wife Denise donated the gift of life to them.

Q. Did you have to go through more tests to check the kidney suited you?

A. It came from Oxford and arrived at 6pm. There was another person called to the 11th floor and we knew one would get it. It wasn't until 10.30pm when the nurse came into the room that we knew. I was there with my wife and mum. We just held our breath – the nurse said it is your kidney; we're getting you ready for theatre.

Q. Can you describe that moment?

A. I was just exhilarated. Then is was like a scene in a F1 Grand Prix in the pits– so many people getting you ready for theatre.

Q. You left hospital after three weeks and have not had dialysis for six months. What has life been like?

A It is just wonderful. Myself and Carla are just having to catch ourselves on! For the last 16 years we have been doing the same thing and always had to return for dialysis. Now we have the choice, freedom and control over where we go.

Q. Do you have a list of things you want to do?

A. One of the things is going on a sunshine holiday without booking into a dialysis unit. I want to get back in fitness. I want to represent Northern Ireland at the Transplant Games.

Q. Have you thought about the donor?

A. Yes, I'm in the process of writing a letter I want forwarded on to the donor family so they know how their loved one has transformed and changed my life.

Q. Is it hard to find the words to write in the letter?

A. Very. The ideal scenario is if I write it and they ask to meet up with me. It would be absolutely wonderful to meet the donor family who had such courage and compassion.

Q. How do you explain the difference receiving a new organ makes to a person?

A. It has a massive butterfly effect. One of the symbols of the charities I work with we selected a butterfly with a small kidney because to us that is what transplantation is all about. It is the liberating the chronically ill that they can spread their wings, travel, see the world and make up for the time that they lost while on dialysis and show their true colours to the world again.

Q. What are you looking forward to the most?

A. Life! I'm determined to make the most of it. I'm protective of this gift and don't want to do anything to jeopordise this gift. I went to see a doctor for a check-up and this sound in the background went off and my heart skipped a beat. It was the sound of a dialysis machine alarm. It brought it home to me I would never want to go back to that.

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