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Organ donation

Having surgery - donating a kidney

After the assessment and approval for living donation, the donors we interviewed had surgery to remove a kidney. Most people went ahead with the operation as scheduled, though Paul and Di said their operations had to be re-scheduled.
 

Paul was given a date for surgery soon after approval. His first operation was cancelled, however...

Paul was given a date for surgery soon after approval. His first operation was cancelled, however...

Age at interview: 56
Sex: Male
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Once approval is granted, then things start to move quite quickly because you’ve been approved, you’re healthy and there are recipients. There are people who need your kidneys, so things moved quite quickly after. Though I did have one major glitch in that I was actually admitted to hospital to have the operation done the next morning, and that very evening the surgeon came to see me and said, “Well I’m very sorry but the person who has been allocated your kidney has become very ill and we don’t think they’re going to be fit enough. So we can’t do the operation now.”

So I went home and that was a little bit disappointing and inconvenient obviously because I’d made all the arrangements.

But, in fact, in retrospect, it wasn’t that much of a problem because it took another six to eight weeks I think before the next recipient was lined up. And I went into hospital and everything went straight forwardly on the second occasion.
 

 

Di was upset when the first recipient didn’t match. She had no idea this could happen. The second...

Di was upset when the first recipient didn’t match. She had no idea this could happen. The second...

Age at interview: 58
Sex: Female
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Once the results came through, then within a couple of days they put me on the national database, to locate a recipient.

This was something that I didn’t anticipate at all in that the first recipient, they found a match within a couple of days. I had to go and give blood for them to do cross matching. Although we had to wait something like three weeks because the recipient’s hospital, apparently for whatever reason, wouldn’t be able to do the cross matching until then. And it didn’t match. And the recipient wasn’t compatible at all.

That knocked me for six. I just thought they’d find a recipient and that would be it. I didn’t know that there was still a possibility that they wouldn’t. And that really, really upset me quite considerably. 

Yes. Take your time, it’s okay

Anyway, they then went through the process again and found a second recipient. But, again, they weren’t a match. It was getting really quite stressful. I thought well what’s going wrong. I thought once I’d passed and been accepted, everything would just be so plain sailing. But in fact it was the end part that caused me the most stress of all.

And then the third recipient was found and both the co-ordinator [specialist nurse] and myself were saying, “Third time lucky, hopefully.” And it was. And that was just such a relief that the third person was a match. So then it was arranging the date for the operation. And my particular hospital only did pre-arranged operations on a certain day each week. So they gave me a choice. And I picked a couple that would have suited me. They then, the recipient and their hospital fit’s in around us, and a date was actually fixed.
 

With hindsight, Di said she would have liked more information on how donors and recipients are matched. She hadn’t been prepared for the fact that she and a patient that had been lined up for her could be incompatible.
 
Some of the people we spoke to described the pre-operation assessment they had before surgery could take place.
 

Di had more blood and urine tests, an x-ray and an ECG. She also met some of the medical staff...

Di had more blood and urine tests, an x-ray and an ECG. She also met some of the medical staff...

Age at interview: 58
Sex: Female
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Prior to the actual operation, you have to have pre-assessment tests because a lot of the tests were done months and months ago and the results could have changed. So I had to be there for a day and there was loads of blood tests, urine tests. I think another x-ray, ECG and what have you.

I also got to meet people I hadn’t met before, so I met the anaesthetist and I met the pharmacist. The anaesthetist was actually a little bit concerned about the ECG because on the ECG it sort of goes up and down at various heights. He called those wiggles. And one wiggle, instead of going up went down.

And he said, had I been having an operation for me, it wouldn’t have bothered him one little bit. But because I was a fit and healthy person giving up a kidney, he wanted to make absolutely sure that everything was okay. And for an anaesthetising point of view as well, so they had to arrange for me to have an ultrasound of the heart. Apart from that, everything was fine. He went over the procedure of the anaesthetic, talked about possible complications.

I also saw the surgeon again. He told me that it wasn’t actually going to be him. He’d be away. It would be a different surgeon doing the operation. But he still went through the procedure. He drew a diagram of where the incisions would be on me. There would be about five incisions, very small ones, where the camera and the operating equipment would go. And then one larger one, hidden by the bikini line, where they’d actually take the kidney out. 

He also explained that, because it’s quite cluttered inside your abdomen, they inflate you with carbon dioxide which sort of fills your abdomen up like a balloon, so they can work much easier with it.  He also informed me about complications from any surgery and made sure that I fully understood those risks. I had been told about them several times before, but he was just making sure.

He got me to sign the consent form but at that point he made it clear that, although they were hoping to do keyhole surgery, it was the right kidney, that once they opened me up it may not be. So I was actually consenting to either op, keyhole surgery or open surgery. He explained that it would be about three to four hours perhaps, the operation. And I could be in hospital two days or three days, depending how I felt.
 

Some of the donors we interviewed had felt nervous leading up to the operation and, for a few, it was the first time they’d had surgery. Clare said she’d felt quite calm on the morning she had to go into hospital but, when she found it difficult to get hold of the specialist nurse, she became anxious. She’d been told to phone the hospital in the morning but, whenever she rang, no one answered the phone. She finally emailed the nurse and went to hospital that evening. Wallee said he asked the nurse for a sleeping pill the night before the operation and then ‘slept like a baby’. On the morning of the operation itself, donors had not been allowed to eat, as with all surgery. Annabel said she’d been worried about having an adverse reaction to general anaesthetic. Di said she’d felt excited as well as slightly nervous, and hoped she wouldn’t panic before having anaesthetic. A few people said their biggest fear was that the kidney would reject.
 

Chris went into hospital the night before the operation. The anaesthetist explained everything in...

Chris went into hospital the night before the operation. The anaesthetist explained everything in...

Age at interview: 73
Sex: Male
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I was just very relieved when at last I got a date to come in one evening, to this particular hospital. And then they did the operation the next morning. The anaesthetist came and had a long talk with me, because knowing I was a doctor he was being particularly obsequious and doing, explaining every little thing. I didn’t care what he had to say because I just wanted to get on with it.

But he explained all about every drug and all this, and all that, which to me was, really I didn’t want to bother with. I just trusted; you got to a stage where you go to an expert, a professional, you just trust him. And if you don’t trust him, well you should go somewhere else. So I trusted the set up and that was it really.

I didn’t have any dread before it, but then I’ve always been rather a reckless person. The next morning, when I woke up,  within a very short while the surgeon came round and said he was glad to say the kidney was functioning very well in somebody else’s tummy. So that was the best news possible. Firstly, that I woke up and, secondly, that the kidney was functioning very well. You couldn’t have more satisfactory news than that.

So I had, I think it was probably three nights in hospital altogether, which were not uncomfortable in any way.
 

 

Harmanjit’s biggest worry was that the kidney she gave her father would reject. It would mean him...

Harmanjit’s biggest worry was that the kidney she gave her father would reject. It would mean him...

Age at interview: 31
Sex: Female
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I think the most scariest point of all is, is it actually going to work? You’ve gone through everything. You’ve gone through the tests, but that’s the anxious moment. I think the night before, his creatinine level was like 740. And then when they came to monitor it again, it had gone down to 400 to show that it is slowly working.

But I think, I don’t know, it would have been like, ‘I’ve done something but it hasn’t worked.’ Not that you’re a failure or anything, but you’re just, I think to myself I would have felt, because obviously then you probably have to do go on dialysis or you have to wait for another one to come forward. And it would have been the whole thing over again.
 

Some of the people we spoke to said that they were comfortable with hospitals and trusted the doctors and nurses who were caring for them. They’d also been given lots of information beforehand about living donation and the surgery.
 

Darren was given a DVD and booklet about organ donation, which included recipients’ and donors’...

Darren was given a DVD and booklet about organ donation, which included recipients’ and donors’...

Age at interview: 39
Sex: Male
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They gave me quite a lot of information. They gave me a booklet which I’ve still got about organ donation. It pretty much covers most of the actual surgery and just the practicalities, what to expect and various things. And again I got a DVD which featured basically people doing this interview and explaining, like the recipients and the donors. I think one or two various other people that are connected, like the wife of someone or something like that.

Yeah. Did you watch that?


Oh yeah, of course. Yes. I personally, I said to the surgeon that I want to see the actual surgery being done. But I don’t, they haven’t got one of them so far. But that was more the kind of the emotional aspects and…

And do you feel you had all the information in the DVD and the booklet?

Like I said, the actual surgery procedure, no, I like quite a lot of things like that, like more as a sort of a reality kind of. But, yeah, it was interesting, it was quite, you know. Everyone looked quite happy to be there, so I don’t think they would have done it otherwise. But it was quite encouraging. So basically that was confined to mainly the recipients and donors from their point of view rather than anyone else like the NHS staff or whatever.
 

Several donors recalled talking with the medical staff just before being anesthetised. Their next memory was of coming round after surgery. Donors are given a general anaesthetic, which means that they are asleep during the operation. Traditionally, the kidney was removed by making an incision in the side or abdomen (tummy), which is known as the ‘open’ technique. This procedure is still used but, increasingly, keyhole surgery is used to remove the kidney and this is also available in a number of transplant centres in the UK. The operation takes approximately two hours and the donor will have a urinary catheter and a drip when s/he returns from theatre.
 
Donors described how they felt when they first came round after surgery. Some felt a bit disorientated at first and several mentioned being attached to a drip and having a catheter. Some donors said they were in pain at first but were given good pain relief, which they could administer themselves. Strong pain relief, often morphine, is given to help alleviate pain and discomfort after the operation. Darren was in quite a lot of pain and turned out to have had a complication, which meant him staying in hospital longer than he’d expected.
 

Annabel described what happened at the hospital. She had some tests the night before. After...

Annabel described what happened at the hospital. She had some tests the night before. After...

Age at interview: 64
Sex: Female
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The night before they check you out in the usual way, your temperature and all that sort of thing. And the next morning you’re not allowed to eat anything as usual. And you’re wheeled down and then they put you under, which is quite nice drifting off.

And when you come round, obviously you feel a bit disorientated. You look round and think “Where on earth am I?” But quite soon you realise where you are, and then you’re wheeled up to the ward. And the nurses usually rally round and are very nice.

And then not long after getting back to the ward, my husband was able to come and see me and I felt fine.  I don’t think I could eat that day. I’m sure I wasn’t allowed to eat that day.
And they give you pain relief that you can administer yourself. You press a little button.  And they’re very good about that, in the sense that they don’t make you feel that you have to be almost screaming with pain or anything before…In fact they encourage you not to, so I think I used about the average amount. I don’t think I used particularly huge amounts or particularly low amounts. But I did press it and I wasn’t in much, I cannot say I had much pain.

I think that evening when my daughter, one of my daughters came with my husband, I must have perhaps had slightly more morphine than perhaps I should have done because apparently I was a bit incoherent. And, as they left, my daughter said, “I think we’ve got to get her off the morphine, she’s talking gibberish.” But I think that was probably just the second day. And then by the next day I was off the morphine I think in a couple of days.

And it is difficult getting out of bed the first time and going to the toilet and all that. But it’s really not very uncomfortable and the nurses were very kind.
 

 

Paul was in pain when he came round but this was dealt with quickly. He hadn’t slept well and had...

Paul was in pain when he came round but this was dealt with quickly. He hadn’t slept well and had...

Age at interview: 56
Sex: Male
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I woke up and just, as I say, there was some pain immediately afterwards but they dealt with that quite quickly. So I then felt pretty drowsy and then, later that evening, I was on the ward.

I had the surgeon come round, told me everything had gone smoothly. I had a device to control the amount of pain relief I received, which worked pretty well. It was a morphine drip that you could control to some degree. And that stayed on and, as I say, apart from the slightly disturbed night as a result of a noisy patient, and I think obviously there was a certain amount of discomfort as I said. But that lasted, so the next day wasn’t great.

But I had visitors, family came to see me and that all went really quite smoothly. That was on, the operation was actually early on a Friday morning and on Saturday, as I say, I had people visiting.

And on Sunday I actually began to feel significantly better. And got out to the bathroom and had various tubes removed. And on Sunday evening I went home. My wife collected me and wheeled me down the long hospital corridors in a wheelchair, in which I felt slightly strange. But, no, it wasn’t that difficult and in fact she escorted me and I went home by train in fact. It was quite easy to do.

So in total you were in hospital for a couple of days were you?

Yes. I went in on the Thursday evening for the operation on the Friday morning and was out on the Sunday evening.
 

 

Darren had a bad stomach pain and vomiting. He turned out to have pleuritic chest pain. When he...

Darren had a bad stomach pain and vomiting. He turned out to have pleuritic chest pain. When he...

Age at interview: 39
Sex: Male
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I had really bad stomach pains, and they had to, the day after they came round, gave like, actually because I was vomiting and stuff, they stuck a tube down my… which I really didn’t like. But they had to pump the stuff out of my stomach, and all the gas and things like that. That was nasty. That was really horrible, man.

So that didn’t really, I thought I was going to be in for a few days but not quite that long. So, I was in

So you were actually in for about six days did you say?

Yeah, at least. About seven. I went in on a Wednesday and I came out on, I was in there for a week, and then I came out on the Saturday. So, I was in there for two weekends, really, more or less. So, yeah, that was more like about 9 days actually I think.

Yeah. And you were expecting to be in there shorter?


Yeah.

Yeah. But, what happened to you?

Basically, I got pleuritic chest pain apparently and a rigid abdomen, which is, I don’t know, basically it’s where you can’t really keep anything down hardly. You just keep vomiting. I did try some food but it just wasn’t really, it was just coming back up again.

And so they took me down the next day for more x-rays and things like that. So they just said, “Right, just drink water for a couple of days and then try really soft food.” And yeah I started recovering really. 
 

A few people said they’d reacted to the morphine they’d been given for pain relief and this had made them sick. Doctors gave them other painkillers instead, as well as anti-sickness medication. One woman said the morphine she’d been given had made her feel very itchy and so her pain medication was changed.
 

Harmanjit reacted to the morphine and the pain medication had to be changed. A patient she’d met...

Harmanjit reacted to the morphine and the pain medication had to be changed. A patient she’d met...

Age at interview: 31
Sex: Female
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I’m sensitive to morphine and I didn’t know that. I haven’t been in a situation where I’ve had any. But obviously my respiration rate fell and because I’m an asthmatic, luckily you know. As you say you know, God’s helping you what have you. There was a lady from the vascular unit, cardiovascular, and she’s probably seen cases that are like this before. And she said to the doctor, “I think this girl’s having some adverse reaction to the morphine.”

And then he, initially it carried on and I was coming in and out of consciousness, falling asleep. And I remember this lady is poking me, and I’m just like, “Leave me alone, I want to sleep.”

But then obviously they took me off the morphine and they put me on Oxycodone and Hydrocodone, which isn’t as rough as a drug and it’s less strong. And then obviously I managed with that and that was fine. But when this was all happening, this lady [another patient] came who’s got her own problems, and she came and she sat by me and she held my hand.

That, for me, was how nice she was, and I thought well I can’t forget that, because okay I’m helping my Dad but yet somebody’s come that I’ve never met before. I’ve only met you the night before for about four hours, and there we were, just had a little chat or whatever.

And this lady has been in and out of hospital. She’s taking lots of medicines. She was in a lot of pain the night before, and I think she had a really rough night, otherwise she was going to go home that Thursday, was it the Thursday? So she was really helpful, just to come and help.
 

Some people said they’d had little appetite at first. Others were able to eat and a couple of people said they’d enjoyed the food. After the catheter had been removed, they’d been encouraged to try and walk but had found walking painful or sore. They walked very slowly and carefully to begin with and needed help going to the toilet. Gradually, walking became slightly easier. Several mentioned that the nurses were helpful and caring, though a few people felt that the day nurses had been more helpful or friendlier than the night staff. Most praised the care they’d received from doctors and nurses and had faith in the team looking after them.
 

Margo had ‘open’ surgery in 1997. She praised the care she and her brother had received. The...

Margo had ‘open’ surgery in 1997. She praised the care she and her brother had received. The...

Age at interview: 61
Sex: Female
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I’m not afraid of hospitals. I’m not afraid of doctors. I’m very trusting. I believe that the doctors know and who am I to second guess them. I’m not a doctor. So I’m very trusting of doctors. I’m very trusting of the medical profession because, when you’re ill, who do you want? You want the doctor, you want the hospital.

We had very good care. We couldn’t have been better taken care of I don’t think. I think it was just, you’re not in the hospital very long either. You’re just kind of there, I think I was there two or three days. The only thing that happened to me is they had the morphine drip for pain, and that made me sick. So, “Get me off that, I don’t need it.” You know so, and even then I thought everything went really smoothly.

So you were in hospital for two or three days?

I think three; maybe I was in four, maybe four. He was in, my brother was only in two I think. They sent him home because he was up dancing.

Compared to how -

Compared to me. But then he has a very low scar and I have a very long scar. And now they do it, I hear, laparoscopically. They can take it through your navel which they didn’t do then.
 

Nurses came round to check on donors regularly. Several also said that it had been helpful having the company of visitors or talking to other patients on the ward. When they were allowed, those who’d donated a kidney to a relative or friend went to see how the recipient was feeling. Those who had donated to an anonymous recipient were told by the doctor, shortly after coming round, that the transplant had been successful (see The recipient). There is no guarantee that any kidney transplant will work. However, living kidney transplantation is overwhelmingly successful with 96% of live donated kidneys working well at one year. This compares with a success rate of 93% for kidneys from deceased donors.
 

Di was moved to tears when she spoke to a transplant patient and his wife. They were very...

Di was moved to tears when she spoke to a transplant patient and his wife. They were very...

Age at interview: 58
Sex: Female
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I went and waited in the garden. It was a lovely day and I’m so pleased because I met a man there and his wife. The man was an in-patient. He was waiting for a kidney and pancreas transplant. He really did look ill. The colour of his skin was white. His lips were almost the same colour. He was as thin as a rake. He was happy though. You know, this is what has surprised me about everybody who is ill. They just keep smiling. I think I’d be, I don’t know.

But I never met one person who was really full of self-pity or anything. They just knew they had to get on with it and made the best of it. And he was telling me and his wife was telling me about himself. And then he said to me, “Oh why are you here? Have you had a transplant?” So I said, “No, I’ve donated.”

And I suppose the natural thing was for them to say, “Oh, who to?” And I said, “I don’t know, whoever’s next on the list.” And this has just stuck with me ever since because they were so grateful to me. I hadn’t given him my kidney, it wasn’t like most people’s reactions, “Oh well done, what a nice thing to do.” He was in tears, we were all in tears. And he was just so grateful for me for getting someone off dialysis, even if it wasn’t him.

And then he was doubled over in pain quite often. I presume it was the abdomen he was having the dialysis, and that was obviously causing great problems and pain. And it just really opened my eyes as to how much it meant to people to have that organ donation. And at that point I was just so pleased that I went through with it, and that nothing stopped me and that I was able to do it. Because there’d be one person like him, not like him anymore but living a normal life, back to their family. And it was, even now, I think about him.
 

Some of the people we talked to said they didn’t sleep very well in hospital as the ward was noisy or because they were constantly being monitored. One person said the bright lights on the ward prevented him from sleeping well. Some people had their own room and had found this helpful. Several had looked forward to being discharged so they could sleep and recover in their own environment. How long a donor spends in hospital varies and depends on individual recovery. The average stay is three to seven days. Donors were discharged from hospital with painkillers to take during their recovery (see Recovery at home and follow up’).
 
The people we interviewed had felt confident that donating a kidney was the right thing to do and had felt assured that the risk to their own health was low. All of them recovered well and encouraged other people to think about living donation. All operations carry some risk and this is no different for living donation. Donors are at risk of infections (e.g. chest, wound or urine) and, more rarely, bleeding or blood clots. There is a very small risk of death for the donor, and it is estimated at 1 in 3000 for this operation (NHS Blood and Transplant 2015).

Last reviewed May 2016.
Last updated May 2016.
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