A tale of two kidneys

17/02/2010

Brave Hanna Lockwood - whose first donor organ failed - explains why signing up to the transplant register is so vital

Hanna Lockwood
22, Aberystwyth

I was four years old and had E.coli food poisoning, which attacks the body and shuts everything down slowly. They caught it, but it had affected my kidneys. I went on dialysis and made a bit of a recovery.

I was stable until I was 12 years old, then my body crashed. I had to go on dialysis again then went on the list for a transplant.
I had it within about nine months, but after the transplant I had high blood pressure so I had to have an operation to fix the narrowing in the artery to my kidney.

During the operation there was a complication – it was about a one-in-a-million chance – which meant that blood supply to my kidney was cut off for too long, and it failed again.

It was like the world comes crashing down on you. Everything you have built up for is taken away from you in a heartbeat.

From the age of four everyone is speaking about you – when you get this kidney, that it will all be fantastic, that everything in your life is to prepare for this gift. Then when you get it and it goes wrong, you’re like, ‘Well, what happens now?’ It took a while to digest that and adjust to life on dialysis again.

The second time waiting for a kidney it’s easier in one sense because you know what you’re expecting. The first time you have no idea what it’s going to be like.

But the second time, my mind was really messed. I was thinking someone has died and given me this gift of life but it didn’t work on me, and you feel guilty. It’s a lot to take, especially for a little person.

The second time I was on dialysis it was so hard I thought I must be making it out to be harder than it is, I must be getting weaker. Until you’re well, you don’t realise how ill you were feeling.

Living on dialysis was hell. It’s not a life – you’re existing, not living. You’re ill all the time, it’s like having a cold all the time. You don’t want to talk to people – it’s an effort just to get out of bed every morning.

As a teenager all your friends are going out, complaining if they’ve got a spot or haven’t got a boyfriend. Everyone is under-age drinking – I couldn’t do that, I had to be home for 8pm every night to set up the machine for my dialysis overnight. I couldn’t have a boyfriend – I couldn’t have gone round to his house. It’s quite a strict regime.

When you’re waiting on the transplant list, all the time you have a bag packed and ready to go to hospital. When they call you, you have to get there right away – and because I live in rural Wales, it’s not like I was only 10 minutes away. My first transplant when I was 12 was in Cardiff, but because they cut transplant services for children, my second would have to be in Bristol.

Every time the phone rings you’re paranoid. You have to give them five top phone numbers – if I was visiting my auntie, I’d have to make sure her number was on the list, and mobiles were rarer five years ago so I’d have to always be conscious whether I’d be in range.

They tell you it’s probably going to happen at night, because that’s when most accidents happen. Most motorbike accidents and things happen at night, so most people get their calls at two in the morning. As it turned out, my call came at two in the afternoon both times.

The second transplant happened when I was 17. I was at my doctor’s surgery in Cardiff with my mum. We were discussing other options, because my dialysis wasn’t working so well for me. I’d tried a lot of things already, and we were discussing one of the last-ditch options – the possibility of my mum donating a kidney. And then the call came through to say that a kidney had become available.

It’s a rush of emotions really. You can’t quite believe it, especially when the call comes when you’re at the doctor’s surgery – that never happens! It was amazing. I had gone from that morning thinking things were pretty bad, to one hour later my prayers
were answered.

They have to rate the kidney to match its suitability and then when it’s formally offered to you, the decision is yours whether you want to go ahead with the transplant or not. A few hours after they officially offered it to me, I was in hospital in Bristol for my second transplant.
That night I felt crap; when I woke in the morning, after the operation, I felt good again, it was weird.

You have to be off work or school for three months but I was walking within a week and out of hospital in a month. It was amazing how quickly I felt well. My dad said he watched me literally turn pink – all kidney patients are generally quite pale. He said: “I watched the colour run back into your cheeks.”

One year after my transplant, when I was 18, I got my first full-time job and moved out of home. I couldn’t wait to do things on my own. My mum said it was like I was making up for lost time!

The best thing is that I’m a completely ‘normal’ person for the first time in my life. It sounds like an awful word, but it’s wonderful. There is nothing I can’t do. I can even go on holiday without needing extra health insurance.

As a teenager, I had a fantastic group of friends but to be included they would have to make an effort to accommodate me. From being that weird person that everyone has to think about, I’ve gone to being one of the gang.

It’s now five years later and I feel like I can do anything. I’m doing an access course,and I want to go to university to study nursing this year, and hopefully to work as a renal nurse.

When it comes to signing up for the organ donation register, the main question I’d ask people is: “Why not?” If you can’t think of a valid reason, why not? It’s a gift of life, it can give someone a life back – I’m proof of that.

I can’t emphasise how much I merely existed before, but now I have a life and I live it to the full. I would really like to get that message through to people.

You are not going to use your organs after you’re gone. If your daughter or mother or brother needed an organ you would probably give it to them. So why does it matter when you’re dead if you can help save a life?

I am quite vocal in my support of presumed consent, where everyone will be on the register unless they choose to opt-out.
If someone feels strongly about it, they will simply be able to remove themselves from the register.

A lot of people I meet, they’re not bothered either way, but they haven’t got round to signing up to the register. Under presumed consent, their organs can be used.

But a lot of other work still needs to be done, in terms of making facilities available and training medical staff to deal with more transplants. But I hope to see it go that way.