Waiting on the list and the call for transplant

Most people we interviewed had become very weak and ill before needing a transplant (see ‘Life before the transplant‘). After an assessment had shown they’d be suitable for a transplant, their name was added to the national list by the transplant centre. When a donor organ becomes available, the computer generates a list of potential recipients based on factors identified within the organ allocation schemes. Many people we spoke to said they were told by their doctor that the call for transplant could come at any time – as early as a few weeks or after months or several years. They could not give an exact date but advised the patient to keep a bag packed so that when an organ was available, they would be ready to go into hospital straight away.

Diana was told she could get the call at any time. She had a bag already packed. She knew the…

Age at interview 54

Gender Female

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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.

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How long recipients waited for an organ (or organs) varied from person to person. One woman said she’d had no idea how long she’d have to wait for a heart transplant but, six weeks after going on the list, she got her phone call. Holly waited years for a new kidney. Several recipients mentioned that they’d known other people to wait much longer than that and, sadly, some who’d died whilst waiting. Holly, like many other recipients we interviewed, advised people waiting for a transplant to never give up hope, to be positive and to carry on living life as normally as possible. Before a kidney became available, she was able to go on dialysis.

Holly waited over 3 years for a transplant. She felt drained and nauseous on dialysis. She had…

Age at interview 23

Gender Female

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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.

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Deepak, another kidney recipient, had been told it could be a very long wait for a transplant but he ended up being on dialysis for only two weeks. This surprised him because, being Asian, it is more difficult to find a suitable match for several reasons. People from South Asian, Black African and African-Caribbean communities in the UK are more likely to need a kidney transplant than the rest of the population. Unfortunately, while the need for donor organs is higher than among the general population, donation rates are relatively low among Black and South Asian communities, reducing the chance of a successful match being found (see ‘What is organ donation?‘).

After looking on the internet, Deepak discovered that South Asians were more likely to get kidney…

Age at interview 49

Gender Male

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I was told by the transplant surgeon when I asked him, How long will it be till I get this phone call Well he said, Normally at that time, this was 1995, It takes between two to four years for a transplant because the waiting list is very high in the UK At that time there were about 5,800 I believe, people waiting for a transplant. And he said two to four years. But he said, In your case, you will probably have to wait six to eight years And I must admit that was a bit of a shock to me. And I then did a fair amount of research on the internet to find out what’s this is all about.

Initially I must admit that I thought it was racial discrimination. Being an Asian in this country I felt, Oh okay, White Caucasians receive it within two to four years, but Blacks and Asians receive it in six to eight years So I thought, Oh there’s a bit of preferential treatment etcetera And I’ve since been forgiven by the medical profession in believing that.

But I did a lot of research and basically I found out a number of things’ number 1 that South Asians have a higher tendency to kidney failure because of primarily hypertension and diabetes, which can work together towards kidney disease, end stage renal failure as it’s called. We have a six to eight times higher propensity to kidney failure than white Caucasians.

Number 2, forty percent of us have positive B blood group, as opposed to most people in this country who have O’s and A’s. Therefore from the available organs, they’re not the best match because obviously with a transplant you want the best blood group and tissue typing. But the blood group is very, very important for the long term sustainability of the kidney.

The third thing was that most Asians and Blacks do not sign up to the Organ Donor Register. Traditionally, typically, historically. And that got me thinking because at that time the statistics were something like 0.4% of the population, of the Organ Donor Register are Blacks and Asians, when they represent about 6% of the population. So that got me thinking a lot. Anyways, I had all this information in the background.

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Some kidney recipients did not need to wait on the transplant list because a relative or friend had offered to donate a kidney to them before they’d needed to go on dialysis. This is called a pre-emptive kidney transplant (see section on ‘Experiences of living donors‘). Other kidney recipients had dialysis three times a week until a kidney became available. Some recipients went on dialysis while a family member could be tested to see whether they’d be a suitable match or until someone in the family felt able to donate.

Liz felt ill and tired on dialysis, one of the most difficult times in her life. She had it for…

Age at interview 40

Gender Female

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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.

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Janice had dialysis for about eight months and then received an organ from her older brother. She…

Age at interview 43

Gender Female

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I was quite ill on dialysis, until I got the transplant really. I had it from June 1998 and I got the transplant in April 1999, so about 8 months, 9 months.

Can you just describe what your life was like in that eight months?

I didn’t do anything. Just stayed in the house all the time. I was in and out of hospital, or if I wasn’t in and out of hospital, I was at home. I didn’t go anywhere or do anything. I didn’t eat. Was weighing eight stone.

Was there anybody at home to help you?

My ex-husband at the time had to take a lot of time off work. And my mother was, she lives in [place name] but she came up to help us there. But I was just, I don’t even remember it to be honest, I was so ill at the time. When I was on haemodialysis, they provide transport and I used to go, because I couldn’t drive. I was not well enough to drive.

Yes. So how did it come about then that you could have a kidney transplant and your brother would be the donor? How did that all happen?

Because they went through the options with me and they said, If you can wait for one on the list which can take anything from you know, it could be straight away up to ten years, Or you can ask a member of your family And I’ve got two brothers. They were both, and also another friend, and they all volunteered. And the one that was the best match was, and he agreed to do it. And he did it, yeah so. it’s amazing.

He was very enthusiastic about it. But we’ve never really talked about it much since. He thinks it’s better to be forgotten. I don’t think he wants me to be grateful for, he just wants to forget it really.

Yes. And leading up the transplant how did you feel yourself?

I just felt very guilty. But I wanted to become well again, and that seemed the only option really. You feel horrendously guilty, especially after the operation when you see them and they’re in so much pain. And that wasn’t very nice.

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While dialysis is an option for people waiting for a kidney transplant, there is no such alternative for those waiting for other organs. Receiving an organ from a deceased (cadaveric) donor had been their only option, and there is a serious shortage of organs in the UK. Most of these people had needed a lot of support from family and had become very weak. Many people we interviewed talked about the day, or often night, that they’d received a call from the hospital to say that an organ might be available. Doctors would still need to carry out more tests to see whether the surgery would be suitable. Several people had had ‘false alarms’ before the transplant finally went ahead. Helen said she didn’t get her hopes up when she received a call from the hospital in case it turned out to be a false alarm. Diana said having a false alarm showed her that she was ready for a transplant because she felt disappointed when she had to go back home and wait again.

Justine had three false alarms while she waited for a double lung transplant. She didnt raise…

Age at interview 37

Gender Female

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I had three false alarms. They were, I think one was when, I think they were all when I was in the hospital. The first one I had, my white blood cells were too high. I had an infection, and they’re not able to give you a transplant if you’ve got an infection. Your risk of survival is very difficult.

The second and the third time, I think it was a single lung not a double lung. And I think it was maybe another time I was sick again. And it’s very hard emotionally when they say you know, We’ve maybe got a pair of lungs. And then they say, Oh I’m sorry it’s not going to happen. I didn’t want to get myself too excited. That’s when I knew, when they said again on the fourth time, We’ve got some lungs, I kind of almost thought the worst. And mentally I’d be prepared for the worst again.

But I also knew realistically, if this one didn’t go ahead, then I wouldn’t be there much longer. And obviously we all, I think everyone knew that. And then we were so happy when they said it was going to happen. It was the best news.

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Cheryl had eight false alarms before she finally had her heart and lung transplant. She was…

Age at interview 52

Gender Female

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In 1992 I got my first call up. Which was cancelled due to the organs not being perfect, not being good for me. They couldn’t use them. It was a risk but I was willing to take that risk. So I went up, and then I came back home again.

Admittedly, I had eight cancellations. Now that is not a bad thing because I knew that they were waiting for the best organs, because I was having heart/lungs. They needed to be from the same donor, so I knew because of all these cancellations they were waiting for the best set of organs that they could have.

The first couple of times, well I’ll say the first four or five, it was fine. It was fine because I thought, We need good ones I’m sure it’ll be my turn. Then on one time I came out, because you always have to have an antiseptic bath, I came out of the bathroom and my Mum’s there and she’s looking at me. She said, You better get dressed I said, Why She said, We’re going home I went, No we’re not And we were. And the disappointment on my Mum’s face really got to me, oh I was so angry.

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Many of the people we spoke to talked about receiving the call that finally led to their transplant, a time they’d never forget. The call came out of the blue and, as they had to go to the hospital straight away, they’d had to quickly ensure everything was packed and ready. Some went to hospital by ambulance; others had gone by car with family. One man went by taxi as the call came at one in the morning and his wife had to stay with their two young children. A few people, like Justine, had already been in hospital for some time before an organ had become available.

Holly cried when she got the call and handed the phone to her dad. The journey to hospital felt…

Age at interview 23

Gender Female

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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.

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Helen was surprised when her call came in the afternoon, eight weeks after going on the lung and…

Age at interview 39

Gender Female

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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

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Linda got her call at midnight. She and her husband rushed to hospital but the organs were…

Age at interview 51

Gender Female

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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.

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Recipients also talked about what happened when they got to the hospital (see ‘Having transplant surgery‘).

Life before the transplant

Transplants are one of the biggest achievements of modern medicine and can save or greatly enhance the lives of seriously ill patients. Organ donation is...

Having transplant surgery

We interviewed recipients who'd had different kinds of transplants. Experiences vary from person to person and also depend on the kind of transplant involved. Here,...