Transcript of Dispatches interview with Sarah Agboola, renal dialysis patient at Guy's Hospital, London, who has been waiting nine years for a kidney transplant

Can you start off by telling me how old you are and a little bit of your story?

Well I'm 29 now and, up until ten years ago, I was just a normal healthy 19-year-old, who hadn't really been ill at all. Unfortunately, quite suddenly, I became ill. My symptoms were really generalised and I think that's probably why it was missed. I was extremely tired, very lethargic, and quite nauseous all the time. Eventually they realised that my kidneys had stopped working completely, so I came to Guy's and had to go onto renal dialysis. This was a massive shock to the system and really quite difficult to comprehend. You're suddenly told that without dialysis you can't live, so this dialysis machine keeps me alive, which is quite a heavy thing to take in when you're 19. So I dialyse on this machine, three times a week for four hours each time. It's an imposition on your lifestyle because you have to come here three times a week. It doesn't matter what you want to do, that's what you have to do and everything else has to fit around that. It's quite difficult.

How does it affect you in terms of your lifestyle and fluid intake, food intake?

The thing about being a renal dialysis patient is that every aspect of your life is affected. For instance, one of the biggest things is that your diet and your fluid intake are extremely strictly monitored. I'm only allowed to take 500 mls of fluid in 24 hours. If you can imagine a can of drink is 330 mls, or a small bottle of water is 500 mls that's all I'm allowed to have. We all drink loads, irrespective of drinking alcohol, you just consume fluid, because everybody gets thirsty, but if you're told you cannot drink more than that because it will make you ill that's really difficult.

Your diet has to be monitored as well, you have to make sure that you're not having too much sodium or too much potassium because, in somebody whose kidneys don't work, these are toxic. This means the more that you have of them the more that your blood becomes toxic, and then there is more need for you to have dialysis. Within our culture, the thing that we do socially is go out for a drink. So to be 19 years old, and to enjoy going out with other people is a really difficult thing to do because you can't go and have a drink because everything that you take in you're having to count. That's really difficult to explain to people because it's something that's just such a normal thing people do. You'll go to somebody's house and they offer you a drink and you're constantly saying no I can't, and then they ask why, and then it's that whole thing of having to explain. Sometimes I don't want to explain if I don't know somebody -- why would I want to tell them about the fact that I haven't got any organs? It's really difficult.

What about diet?

The diet, as I said, is no potassium and no sodium. Things like bananas are full of potassium. Crisps, chocolate and all the things that we all like to eat, you're restricted on. Then things like fruit and vegetables you're not allowed to eat freely because those things within your body become toxic and make you feel ill. It's quite a bland diet, I think. They're trying to make it more interesting but it means if you go to restaurants you can't eat prawns and lobster and all the nice stuff because you're not really allowed those things. Again it's very difficult socially because you can go to a restaurant and eat low fat, but you can't go to a restaurant and eat a renal diet, it's just not possible.

How did you feel when your life turned upside down?

Being 19 and then suddenly discovering that I've got renal failure and that I have to be on a machine to keep me alive until I'm lucky enough to have a transplant is very frightening. I was somebody who -- apart from having food poisoning when I was about four years old -- I'd not been in hospital. I'd watched my mother go through a terrible illness, she had breast cancer and she died in hospital. So hospital wasn't a place that I felt safe in.

I remember being told when they finally diagnosed that I had renal failure, I remember actually saying to the doctor 'I think you've made a mistake'. I'd been really ill and my GP hadn't picked up on the signs of it. So when they finally said you are very unwell, I was so relieved that somebody believed I was unwell because I was beginning to think I was going mad. To be relieved, but then to be told you're really ill was like 'No, no, no, no, you're just going to give me something and I'm going to feel better'. It's extremely hard to comprehend, I think really up until about the first two years of the illness I was still, I wouldn't say in denial, but sometimes I'd wake up and think 'Did this really happen? Did I really get this illness?'

Can you talk about transplants?

After being diagnosed, I was quite fortunate in a sense because my blood group is B positive, and after four months of being on peritoneal dialysis, I was lucky enough to be called for a transplant. That was a phone call out of the blue. I hadn't been on dialysis very long and so, I was sort of, 'Oh right, I'm going to have a transplant'. I didn't understand all the complications that can happen, I believed that a transplant meant that now I was going to be well.

The operation went really well, but unfortunately the transplant only lasted a year because it rejected. Like a lot of people I didn't understand that transplants can reject, I thought that they put the transplant in you and then you're well. That wasn't the case. I had a year that wasn't brilliant. I was probably coming up to hospital at least once a week and if my levels weren't right I'd have to come in. It didn't matter what I was doing, it didn't matter if I had plans. Everything has to be dropped when you're a dialysis patient or a transplant patient, hospital has to come first.

I'd have lots of biopsies which isn't brilliant for the kidney. Then, after a year of being in and out of hospital, of being unwell and getting infections (I actually had shingles at one point), I lost the kidney. It's like a double whammy in a sense because you lost your kidneys out of the blue when you didn't think you were going to be ill, then you've had this amazing operation that's going to make you well, and it doesn't. You go through a year of hell, you take all these drugs, it changes your body image, gives you facial hair, puts lots of weight on you, and you feel and you look like a freak. But you're thinking I've got this kidney and it's going to make me really well, and then after all that they say actually you've lost the kidney, we'll put you back on dialysis and we'll get you another one. Then being back on dialysis, you feel more ill because your body's sort of got better, and then you get ill again, you almost get more ill than you were before.

Can you tell me about the wait for another transplant?

Well, having lost that transplant back in 1991, I had to go back onto dialysis. Nine years down the line I am still waiting for a transplant. The problem is that, having lost that transplant, it's harder for me to get a transplant now. So, as you said I'm waiting, every day I'm waiting for a phone call so that I can have a transplant.

But while I wait I'm having other problems. I have had problems with my access to the place that I put the needles for dialysis. In the last three years, seven times the graft has clotted off, meaning I've had numerous operations just so I can go on to a dialysis machine. Each operation you have makes you ill, each operation you have when you're an anaemic patient means you lose blood. If I lose so much blood that I'm extremely anaemic I take an injection which will stop my anaemia. But when it gets so low, the only thing I can have is a blood transfusion. That's brilliant because within a few hours I feel better. But every blood transfusion I have will increase my antibody level unless I have a blood transfusion that has less white cells in it. All that is added pressure for me, every time I get ill I think I am harming my chances more. But what can I do? If I don't have the blood transfusion I won't get a transplant because I'm going to be too ill anyway. It's a Catch 22 situation.

You're in this perpetual state of waiting, you can't plan anything. I can't say to you I'll do that in three weeks time because if anything goes wrong on this machine I won't be able to. I can't say what I'll be doing in three weeks time because I could be in hospital. In fact the last time I went into hospital, I came for dialysis, it was a Friday. I felt fine, I hadn't got any problems, I'd been to work the day before. As I put the needles in nothing happened, the whole thing had clotted off and so I spent Christmas in hospital. It's that not having any control over your life which is so depressing and which is so difficult to explain to people.

If you hold a job down, even if it's a part time job, the fact that you don't know where you'll be from week to week makes you feel like you're not giving the best of your ability. You may have to ring them up one Monday morning and say I can't be there because I'm in hospital. There's a lot of prejudice against people who are trying to work because they don't understand that this illness is so controlling that you don't have any power over what you're doing.

What do you most wish for?

The thing that I most wish for, is a transplant but, quite selfishly, I want a transplant that's not going to reject. I want a transplant that's going to have the right tissue type and that will just give me the stuff that we all take for granted. I want to be able to go on holiday, I want to be able to plan my life. I want to feel not like I've perpetually felt for the last 10 years. You feel well sometimes, you don't feel well most of the time, you don't know what your life holds. It's just a perpetual state of not knowing what's coming round the corner, which is so unfair. I want what everybody else has, which is just to live a normal healthy life and not worry about what's going to happen or feel ill.

How must society change to end the wait?

Having waited nine years for a transplant, I realise that the only way people like me are going to get organs is if we change the system of organ donation in this country. I personally feel that the best system is where people opt out of donating their organs. That means if you feel strongly for whatever reason that you don't want to donate your organs, you make sure that you've registered that on a national register. This would mean that if you don't have any sort of feeling either way, or it's something that you haven't thought of because you're living a healthy life, and you suddenly unfortunately lose your life, your organs can be used to help somebody else.

I know that I'm slightly biased because I'm on dialysis, but I really think that that is a fair, sensible and productive way of being positive in the event of somebody's death. As a society we have to understand that people in this country are dying, they're dying on dialysis. They're not dying on dialysis because dialysis is killing them, they're dying on dialysis because their bodies are worn out. My heart, every other day, is being stretched because even if I keep within the levels of fluid that I'm meant to drink, naturally my heart is being stretched and then it's being shrunk, that stretching and shrinking is wearing out my heart. In the event of a transplant, I will have damaged my heart, and even after a transplant my heart will be slightly damaged and there is nothing anybody can do to make my heart better. We have to really understand that people are dying on dialysis and people don't need to be.

So if you'd had a kidney earlier, your heart wouldn't be damaged?

I look at how long I've been waiting, I've been waiting nine years. If I'd been waiting a much shorter time then all the problems I've been running into, all my vascular problems, the places that I put the needle, all the things that have that have gone wrong for me probably wouldn't have happened. I would have been living a normal healthy life, and that in itself is quite hard for you to comprehend because you think gosh I wouldn't have had x amount of operations if I'd had a transplant. There are so many people in this country who are waiting for transplants who will basically get iller and iller and iller from something that everybody else can enjoy irrespective of who they are or how old they are.

What do you think about living donors?

The idea of living donors is something that, at the beginning of my illness I didn't understand the relevance of. I now feel that that is probably the key to this problem. I look at friends and family and I think sometimes I don't see them as people, I just see them as two kidneys working on two legs. I mean we only need one kidney to survive and they've got two. I think that the answer is probably the idea of living donors because that then means that there's no negativity, nobody dies to give you life, but at the same time it's almost like the ultimate recycling. For people in Scandinavian countries the idea of living donors is much more widely felt, and they seem to have fewer people on dialysis, and people wait much shorter times. So I think that's probably the key, I think that as a society we have to understand that it's okay and that there's no problem in helping each other because that's the only way that we're going to get this problem sorted out.

What I most of all want is a transplant, but I want a transplant that's going to last and not reject. One that will give me the life that everybody else seems to enjoy, give me freedom, allowing me to go on holiday and take control over my own life. That's what I most of all wish for, but I feel that, like so many other people in this country, the only way we are going to get to this is if we explore the idea of living donors. That has to be the key. There are people -- our friends, our family -- who walk around with two kidneys. We know that you only need one kidney to live, we have to explore the idea of donating and giving to our fellow human beings, because that's the only way we're going to stop people dying on dialysis or whilst waiting for any organ, but especially for kidneys. It's something that we can do without harming ourselves, it's one of the safest forms of transplantation so I understand and I feel that we have to change our attitudes if we're going to save each other.