Organ donation

Did they actually say how long you would have to wait or that…?

No. They said that it could be, you could get a call half an hour after you’ve gone on the list or you could wait for a year, two years. We really don’t know.

So have your bag ready?

Have your bag packed ready to go. And I talked to other people and some people had waited three months, some people had waited two years. And I talked to someone who’d been on the waiting list for eight years as well, and still hadn’t come up with the transplant. I’ve talked to people who’d been too unwell. The call had come but they had been too unwell. And people had lots of false alarms as well, so I knew that it was very uncertain what would happen next. And I knew I might die before I got the call for the transplant.
 

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.
 

You were on dialysis three times a week?

Yes.

So what was the routine at that time? Were you picked up by an ambulance in the morning?

Yeah, an ambulance car. I was about 10 miles away from [place name], I lived in [place name]. And I was taken down Monday, Wednesday, Friday in the morning. And that became my routine really. I was very strict with my diet. I’m not quite sure how diets are now with dialysis patients, but I was very strict. I didn’t have chocolate. I didn’t have fresh fruit. I didn’t have coffee. I really stuck to the rules.

I used to feel terribly sick going down to hospital and I used to suffer terribly on dialysis. I found that, I think it was an acetate one didn’t work, so I had a bicarbonate one. I think at the time when I, you know, just awful things like if I was on dialysis and it was the time I was having my period, that would be terrible and I just felt absolutely drained.

How many months did you say you were having dialysis?

I was lucky. I was only nine months on dialysis. Yes.

And at this time did the doctors talk to you about having a transplant and,

Well my Mum and Dad were being tested. My Mum and Dad had approached the consultant and said, “Look, what can we do?” And being a parent myself now, I understand their frustration of, you know, “What can we do? Our daughters near the edge of death, can we do something?”

And so they were being tested but, to be fair, I can’t really remember a lot. I can only remember sort of dialysis, staying over, feeling ill. Extremely high temperatures and I always used to throw high temperatures on a Saturday when everyone’s relaxing at home, and off we’d go down to the [name of] Hospital again. And so yeah, it was just a very difficult time. Probably the most difficult time of my life I think, yes.
 

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 just on the lung and liver [list] and I had the phone call about 8 weeks later, which was in the September, 2006.

A call in the morning which is quite odd because normally you’re given the call in the evening, or during the night. So when I answered, I mean I used to go to bed every night petrified that I was going to get this call. When I had the call in the day, I thought it was just the transplant co-ordinator [specialist nurse] seeing how I was. But no, she was saying, “We’ve got the organs.” She’s very down to earth, [nurse’s name] is, a lovely lady. “Come on, we’ve got the organs. Do you want them or not? Get down here.” That was how she put it. And I was like, “Okay.”

So went down at 1 o’clock, everything was fine. But even at that point you don’t know whether you’re going to go through with the op or not because if there’s a problem with the organs, they will cancel it all. But I was very lucky.

She came in her theatre gear and said, “Right, come on, we’re off.” And that was it. And I’m not going to say I was frightened because I wasn’t because my health was so poor and my quality of life was so, it was awful, that I kind of thought, “Well, if I do this and die, I die. If I don’t do it, I’m going to die anyway.”
 

It was the 25th January 2004. We were in bed. It was a Saturday night and the phone went at half past twelve at night. And my husband answered it, and he said, “Right you have to go, that’s your transplant.”

I got up out of bed and made myself a cup of tea, as you do. And we had to go to my local hospital first to pick up my notes to take with us. So we did all that, and I think we eventually got to the hospital about three in the morning. And as we were aware that most people who’ve had transplants will know there’s a window of time that you have to get your transplant in.

And I was going through a double transplant, which was a kidney and a pancreas, so we rushed. We got to the hospital, we got admitted. We got into the room, and nothing seemed to be happening for a long, long time. And it turned out that British Airways wouldn’t let the organs on the plane because it was locked boxes and, at the time, there was all the parcel bombs. So there was a delay in the organs getting to the hospital. And then when they got there, they had to be all checked again. And eventually they came and said, “Go and have a shower, get prepared. Get the gown on and we’re just waiting on a phone call.” And that phone call came.