I have seen my transplant co-ordinator [specialist nurse] once since my transplant. No twice sorry. She came in to see me a couple of days after my transplant to make sure that everything was going well. And then I saw her when I spoke to her about writing to my donor family.

They obviously say that you can know details about, strict details about your donor. And then the option is there for you to write to them if you want to write to them. So I was told the age of my donor, the sex of my donor, and that was it.

And I decided that I would to write to the family and obviously express my thanks. I mean thanks’ is a small word that really doesn’t come across as meaning much. But yes it was the hardest letter that I’ve ever had to write. And to write down in words how thankful and how grateful I am for what their family member did for me was really, really hard.

Yeah. And you then wrote that letter

Yeah.

Gave it to the transplant co-ordinator.

Yeah. I wrote the letter to my donor family and there’s obviously strict guidelines on what you were allowed to put in a letter. I just signed it from [name]. And I gave it to the transplant co-ordinator and then they post it on. They check it. They obviously have to read it and make sure it’s suitable, and then they post it on. And then it’s up to the donor family if they write back to you.

Yeah. And did you hear from them or?

I didn’t. I didn’t hear back in letter form. But the transplant co-ordinator rang me and said that the family had received the letter and that the family had rang the hospital and said how pleased they were to receive the letter. So I didn’t actually get a written letter back but I know that the family did receive it, and that they were pleased with the letter, which is nice to know.

I’d say that you definitely know who your true friends are when something so dramatic as being diagnosed with such a chronic illness happens. You do find out who your true friends are. And they will accommodate your needs. Whether I was going out or not, they always used to let me know that they were going out, and that the invite was open. They never stopped inviting me.

Obviously I didn’t have as much energy to do what I wanted. But I would make the effort to go out, and say they’d be out for a few hours, I’d just go for half an hour, make sure I saw them and then came home.

Obviously the diet restriction that comes with kidney failure, low salt, low potassium low phosphates, that was, eating out wasn’t great. And only being able to drink 500 millilitres of fluid every day, that sort of affected my social life as well. But obviously you do find out who your true friends are by that happening.

I’d say talk to them, talk to your friends about it. Tell them that, make sure that they understand that you’re not being a pain, that this is a serious problem and that they need to be a bit more understanding and a bit more sympathetic to you basically.

It was three and a half years down the line and I was in, I remember the exact time and place. And I was in Halford’s car park getting the windscreen wipers changed on my car. The call came through on my mobile and it said no number. So I just picked it up and said, Hiya Really friendly.

And the person at the other end of the phone said, it’s the transplant co-ordinator [specialist nurse] from [name of] Hospital. We have a kidney for you. We think that it might be suitable for you. Can you come here straightaway And I just burst out crying and I couldn’t speak on the phone.

Thankfully that my dad was with me and so I passed the phone to him. And the transplant co-ordinator explained everything to my dad and my dad was able to tell me what was happening as I wasn’t in the best frame of mind at that point.

So this was half three in the afternoon, and it was actually a day that I was due for dialysis. So first of all they told me to go to my dialysis session and then go to the hospital. But then I later received a phone call saying, No, come straight to the hospital. We will give you dialysis here

The journey to the hospital only took twenty minutes but it felt like a lot longer. Obviously my thoughts were of my future and what I might be able to do, like I’d hated, while I was on dialysis I couldn’t make future plans. I didn’t how I was going to feel tomorrow let alone in six weeks time. So I couldn’t make future plans.

So in my head I was thinking of all these things that I might be able to do and I might be able to plan for. But then I was thinking about the other family that had either received a phone call or was by somebody’s bed and they’d just lost a loved one. And that they were going through a whole load of emotions that were completely, a different set of emotions to mine.

So it was a mixture of emotions, and the journey only took twenty minutes but it felt a lot longer.

I was diagnosed in 2005, and I became an advocate in 2006 for Live Life then Give Life. And it wasn’t just so that, I wasn’t just being selfish so that I would get my call and I would get my transplant. But it was just to help other people get their second chance at life, to make sure that people signed the Organ Donor Register.

The statistics then were 400 people die every year waiting for a transplant, and now it’s a thousand people die every year. I mean that’s just in four years that that figure has changed by 600 people extra dying a year because not enough transplants are available.

So I think the figures really hit home, and I wanted to do something about it. And even if I’m a very small fish in a very big ocean, but even if I could just get one more person to sign up a year, then that would make a difference to me. That would be an improvement to me.

Yeah. And you mentioned you found it helpful speaking to other people on the internet? What kind of questions and support did other people in a similar situation give you?

They gave me the advice was just be positive basically. They said the same thing. They said, be positive and not sit back and not think about it too much.

I mean I would ask questions, like medical questions about my treatment. But then people on the forums or people on the internet would ask emotional questions as well. And there was always someone there to answer the questions, whether it would be through Live Life then Give Life’, through the Kidney Patient Guide, which I found really useful, that’s a forum on the internet. There was always someone there to answer a question. There’s always someone at the end of a telephone, so just talk to someone and don’t just sit on your own and worry about things.

It was December 2004 and I was 17 years old. I was at college and I started to feel really ill. I had a sickness bug, well what I thought was a sickness bug. It lasted longer than usual. So I went to the doctor and he agreed that it was a sickness bug, and that I’d be fine in a few days. Drink water, clear fluids, the usual.

And then, a few days later, I was still feeling pretty rough. And it was over the Christmas period and my doctor’s wasn’t open, so I went to an emergency doctor. And he took my blood pressure and I’d never had my blood pressure taken before, so it was the first time I’d had my blood pressure taken. And it was sky high. I can’t exactly remember the numbers in my head, but it was sky high for a person of my age. And he immediately knew that something wasn’t right and he said to mum and dad, Shall we ring an ambulance or will you be able to take her to the hospital

And so the hospital was forewarned and my mum and dad took me to the hospital. And I was put in an assessment ward, various tests took place, urine, blood tests, a central line was put in. And, up until this point, I just thought I had a sickness bug, I’d be home later in the day. I didn’t think they’d keep me in or anything like that.

And then we kept hearing the doctor on the phone. I was in a cubicle but the desk wasn’t too far away, and he kept saying, This is [name of local] Hospital, is that the [name of city] Hospital? I have a patient here whose kidneys aren’t working very well I kept hearing the word kidneys crop up now and then, and then the thought had never crossed my mind, anything about kidneys. I just thought I had a sickness bug.

And then they said that I needed a scan on my kidneys to check that they were okay. I went for a scan and then you could tell immediately by the look on the doctor’s face that something isn’t quite right. I heard the words, they’re very small Something’s not right And then silence. And my mum and dad were waiting outside and they knew that something wasn’t right.

So after the ultrasound I went back to the ward and then the senior doctor came in and said, Your kidneys aren’t working properly. They’ve shrunk. We don’t know what’s caused it but you’ll need to go on the transplant list. You’ll need a kidney transplant It was all in one sentence, hit us like a tonne of bricks.

And then he just walked out and left the room, and we were just left to deal with it, which looking back, that wasn’t the best patient bedside manner that we’d seen. Obviously we were in such a shock we didn’t have time to complain or anything or like that. But that wasn’t the best way that it could have been dealt with. So then I was whisked off to intensive care.

I went straight onto haemodialysis, not using the fistula because that needed time to mature. So I had a central line in my neck, and I went straight onto dialysis. And I was told that I would need that until I had a kidney transplant. So I’d need it three times a week, four hours at a time, until a kidney became available, which was obviously a huge, huge shock.

My mum and dad actually got tested to be donors but they weren’t suitable. My brother offered to be a donor but he was just about to get married and so I didn’t want to put that pressure on him. I was put on the transplant waiting list after I was stabilised, and that was six months after I started dialysis. And I waited for three and a half years for my transplant.

While I was on dialysis I was pretty ill. Feeling nauseous all the time. Feeling tired, just general day to day things that people take for granted I couldn’t actually do. I couldn’t walk up the stairs without getting out of breath. I managed to carry on with college work, and my college were understanding about it.

And I went to university. Luckily my university lectures weren’t full time so I was able to carry on with that and I got my degree.

And at the same time as I was about to go into my last year of university, I got my call for transplant in October 2008. And it came as such a huge, huge shock. I’d been waiting three and a half years, and you kind of put it to the back of your head. You don’t really like to think about it. Because obviously you know the circumstances of you getting that call is devastating for another person, another family out there. So it’s a mixture of emotions when you get the call. You’re happy that you might have a future, but you’re also sad that someone has had to die for you to receive the gift of life.