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Organ donation

Assessment and tests for living donor kidney transplantation

Before someone can become a donor, a series of thorough tests need to be done to ensure they are fit and healthy enough, physically and emotionally. The assessment includes a number of medical (physical) tests as well as a mental health assessment, and takes a number of months to complete.
 
In England, Wales and Northern Ireland the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, provide the legal framework for organ and tissue donation in the UK. The Human Tissue Authority (HTA) regulates living donation and must approve any such donation. All donors have to be assessed by an Independent Assessor to ensure that all the legal requirements have been met. The law requires that the donor fully understands the nature and risks of the procedure and must not have been coerced, pressured or paid for the donation of the organ or part organ.
 
We did not interview any adults who had donated a part of their liver, lung or small bowel, so all the experiences in this summary are from kidney donors.The evaluation tests for living kidney donors include a full physical and psychological evaluation. Blood, urine and radiology tests are used to determine suitability for donation. A blood sample is taken to determine the donor’s blood type; tissue typing to check whether the donor and recipient are compatible. An ECG and a chest x-ray check for abnormalities of the heart and lungs. A review of all systems, previous illnesses and operations and family medical history is also carried out. Urine samples are taken to screen for kidney disease or any abnormalities, determine amongst other things the absence or presence of a urinary tract infection, and assess the amount of protein excreted in a 24-hour period.
 
The people we interviewed discussed the tests they needed to have before their donation was approved. Many had looked on the internet for information before speaking with a nurse or doctor. Those who were giving a kidney to a family member discussed the possibility first with medical staff at the transplant centre that their relative was being cared for. The first piece of information doctors needed to know was the donor’s blood group to see if it was compatible with the recipient.
 

Harmanjit wanted to donate a kidney to her father. Her older sister also offered to be tested....

Harmanjit wanted to donate a kidney to her father. Her older sister also offered to be tested....

Age at interview: 31
Sex: Female
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We went back to the nephrologist [kidney specialist] and they said, “Well, we’ll have to start doing tests.” And at the same time my sister, who’s about fifteen years older than me, she said, “I’d like to do it.” But, at that time, I’d started having all the function tests, respiratory tests, ECG’s and kidney function and everything. So they said, “Well, we’ll do you first. If you do have some complication and we can’t go ahead with yourself, then we’ll consider your sister.”

First of all they checked that I had two kidneys myself, that they weren’t polycystic. And they scan the kidneys. They check the size of the kidneys, that both of them are functioning appropriately, according to what they should be; that there’s no damage to them or anything. Then they did the, I’ve forgotten the name of the,

Was it a scan, MRI?   

MRI scan. They did that and they also injected a dye just to check the main arteries and vessels that are surrounding it, that they’re all functioning. And I remember they said that it’s easier to get to the left than the right because there’s more difficult access, so if the left one’s appropriate then we’ll go for that one. They did that one.

They gave me an ECG to check the function of the heart, that that was working. They just did normal blood pressure. I remember the only one that was a bit scary for me is when you go under the, is it the MRI? Yes, I went through that. That was a bit scary because I remember I had one hole at the other end, it’s just because you listen and you feel a bit claustrophobic with your head. But I laugh sometimes, that’s easy, that for me was the worst part, more than the actual operation, that bit because your arms out the other end.

And they’ve got this dye injected, this blue dye into you. And obviously it’s got a thumping sound in the machine, like it’s vibrating. So for me that was, and I actually laughed to my Dad because he met one of his colleagues, one of his friends in the hospital. So he went off to have a coffee with him and I’m like stuck in this machine.  But I mean that was about half an hour or whatever, that was okay.

Then they did just normal scans, ultrasound scans. But they were thorough. And obviously they did the respirometer just to, you breathe in and they check your respiration rate and everything. I’m slightly asthmatic, but obviously that didn’t impact or effect the results at all, the kidney, being asthmatic was under control anyway.

We did that and they obviously did the cross match between myself and my Dad just to check that we didn’t react, or there was no reaction between the two bloods. They cross match antigen, and obviously we matched, our blood group.
 

Those people who were donating to someone outside the family visited their GP first or contacted their nearest hospital or transplant centre. Many of those we spoke to commented on how thorough the tests had been and that they’d felt reassured that the process was comprehensive. They could now be more confident about their health than if they had never become donors. Knowing that the tests had not detected any problems and that they were fit and healthy enough to donate a kidney was very positive news. Margo, however, who had her tests over 13 years ago in America, said that when she was first tested, she wasn’t healthy enough to donate a kidney to her brother. Annabel said that one of the tests showed that she might have a problem with her liver. Further tests, though, showed that there was nothing wrong and she was able to continue with the process.
 

When Margo found out she couldn’t donate a kidney to her brother, she started drinking lots of...

When Margo found out she couldn’t donate a kidney to her brother, she started drinking lots of...

Age at interview: 61
Sex: Female
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I am one of four children. He’s [recipient] my youngest brother, but he and I are the same blood type. So I went to be tested and, at that point, they tested me and they rejected me. They said that I didn’t, well I didn’t eat well enough and I never had a glass of water in my life.

So I started drinking water, and drinking water, and drinking water. And eating and eating and eating. And a year later they called and said, “He’s really bad and we need to re-test.” Which they did. And they said, “Okay, let’s do it.” So I was very happy to hear the news.
 

Some people we interviewed had to take time off work for the tests and, sometimes, this was inconvenient. Most transplant centres try to arrange the tests and investigations around a potential donor’s work schedule to minimise disruption to their job. It is sometimes possible to arrange for some of the tests to be done locally if the donor lives a long way from the transplant centre. Although no one suggested that they expected to be rewarded for what they had done, some people felt that they had perhaps expected to be treated with more consideration, for instance offered a meal when the tests kept them at the hospital for the whole day. One person commented on how expensive it was to park at the hospital.
Donors described what the tests had involved. Several had taken someone with them to a few of the appointments. Wallee donated a kidney to a friend and former colleague in Holland. He had some tests in England and two in Holland but said he couldn’t remember much about them. Most people found the tests straightforward and painless.
 

Chris describes the various tests he had to have before getting approval to become a donor. These...

Chris describes the various tests he had to have before getting approval to become a donor. These...

Age at interview: 73
Sex: Male
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What tests can they [potential donors] expect to have?

Well, examining specimens of urine to see if there’s protein, which means the kidney may not be healthy. May not be healthy. Then blood tests to assess whether the kidney is washing out all the waste products correctly. Looking for other diseases. It could be that I had some disease lurking in my body which would harm the kidney or the kidney might even be infected with something. So you’ve got to exclude all those other things to be sure that you’re not going to harm the recipient of the kidney. So that’s blood tests really.

And then a test to see if my heart and lungs were good enough to stand up to what is a major operation, although it’s different to some of the old fashioned major operations. So that meant an exercise test and electrocardiographs, and chest x-rays and basic things like that.

And then finally this CT scan angiogram, where you have a dye injected into your vein in your arm and they do a CT scan. Which shows up all the little vessels and the contents of your tummy in the most minute detail. It’s absolutely amazing. And so the surgeon then can see exactly what he’s going to face when he starts the operation.

So I think those were the chief things. A psychologist was asked to see me. That was quite interesting and he felt that I was going to endure a lot of pain afterwards for some reason or another. And said he would always be available. But I’m not a terrible lover of psychologists in general, they have a place but…so I’m afraid I didn’t request his assistance. But he was very nice.

And then I had to see someone who comes to see fair play. This is someone who is supposed to be not attached to the kidney unit but acts on behalf of, I think of the Department of Health. And she asked me questions, “Is there any possibility that other people had influenced my decision? Was this going to affect my finances in any way?”  Could there, she didn’t ask directly, was there any corruption involved in this. So it was really acting on behalf of the Department of Health to be sure that this was a bone fide action.
 

 

Di describes the psychological evaluation she had before becoming a donor. After passing this,...

Di describes the psychological evaluation she had before becoming a donor. After passing this,...

Age at interview: 58
Sex: Female
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I also had a psychology evaluation and a psychiatric evaluation. The first one to determine really my emotions. Did I know what to expect emotionally and what if the transplant was an immediate failure?  Sometimes people, after an operation, feel depressed, and was I prepared for all these different types of emotions I could get. A very nice lady, and she gave me her card and said anytime, if I wanted just to pick up the phone, I could speak to her.

 

The psychiatric test was basically to see why was I doing the donating. Did I really understand what I was about to do?  To make sure that I wasn’t being coerced either with money, with gifts, or perhaps even some episode in my life where I felt I can pay back or whatever. I passed both of those.

 

The actual tests lasted about eight months and then once the final test was had, and I’d passed it if you like, the team had got together and decided yes, she can go forward to donating.

 

I then had to see an independent assessor. Now he looks at all the tests that have been done to make sure that they’ve been done, that the results are as they should be. He questions me to make sure that I really, really do thoroughly understand about the process. And he will ask me questions that I had to answer to show him I did know the answer, rather than just saying, “Yes, I understand.” He made sure I did understand. He then, on line, submitted the application and said, for altruistic, it’s say five or ten days to get a response.

 

Before any tests, the Asian doctor asked Harmanjit if she was really sure about donating. In a...

Before any tests, the Asian doctor asked Harmanjit if she was really sure about donating. In a...

Age at interview: 31
Sex: Female
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They spoke to me first separately on my own and just checked, you know you’re not being forced into it, or all the other implications and things that you can have. Or you’re not being paid for it or whatever. And he did actually say, which was I suppose in a nice, like a fatherly sort of way, said, “Look, you’re not married. You’re Asian. Some people might think, you know, “You’ve only got one kidney.” Some people might see the whole bigger picture that you’re trying to help somebody’s life, and the whole thing.

So I explained to him, I said, “Look, I’m not married now. But I wouldn’t want to be with somebody who would think that there’s something wrong with me because I’ve only got one kidney. You know, I’m trying to…” So I explained that and then he said “Yes.” And then he never mentioned that again. But I think they have to cover everything just in case, that you are adamant and you are sure and you know what it involves. So then I carried on with all the tests and then my Dad went for his.
 

Many of the people we interviewed said that the assessment process had taken longer than they’d expected. For some, this had been an uncertain time, sometimes stressful. Annabel said she was expecting to have several tests on the one day but this did not happen and the process took about 16 months in total. A few people said that, with hindsight, they appreciated the length of time it had taken and saw it as a positive thing. It gave them plenty of time to think about the enormity of what they would be doing, though none of the donors we interviewed wavered in their decision during this time. Waiting for test results was also stressful for some, and several donors wished they’d been given the results sooner. Paul said it would have been helpful to have a report of the results but appreciated that NHS medical staff might not have had time for that. He couldn’t see why he needed a psychological assessment but accepted that it was a legal requirement.
 

It took about 16 months from the first appointment to surgery. Di never really knew which test...

It took about 16 months from the first appointment to surgery. Di never really knew which test...

Age at interview: 58
Sex: Female
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I was quite in the dark about what was to come. Altogether, it took about 18, about 16 months from that very first appointment to the actual donation. The evaluation itself was about eight or nine months. And there were various appointments. Each time it was always blood and urine, that seemed to be just the standard thing. There was kidney scans, MRI of kidneys. They do a GFR test, where they have to put some solution in you and it goes round your body. And they test how quick it is to come out, all this sort of thing. Or go through the blood to test the function of the kidneys.

None of them were unpleasant at all.  One was quite time consuming, that was about four or five hours, where they had to take blood tests every hour to check how the kidneys were processing things. But that was no hassle at all. I just took a book and that was fine.

There was quite a long wait between some of the evaluation tests, which was a little bit stressful because you didn’t know what was happening or when the next one would be.

I started in 2009 and donated in 2010. So not really all that long ago.

Did you know that it would be over about 16 months or…?

No. No. And I found it quite stressful, the length of time. And the waiting and not knowing what was going to happen. And there were a few hiccups along the way. So I found it quite emotional, you know stressful, the whole thing. Maybe that was just me, not being patient.

Quite a few people have mentioned the time that it took.

Yeah.

Did you ever kind of think, “Oh, why am I doing this?”

No.

During that time?


No, never. If it had taken three years I’d have carried on doing it. I just wished that I’d been given a bit more information and knew what to expect. I mean if you know that you’ve got to wait two months for your next appointment, you wait two months. But when you don’t know and it’s week after week you don’t hear a thing, then you start to begin to worry, “I’ve failed, I’ve failed the tests,” you know.

And then of course you hear there’s another appointment and you think, “Oh thank goodness for that.”
 

Some people said that, because the assessment took longer than they had expected, shortly before surgery they had to have some re-tests to ensure they were still fit and healthy. Darren said that his daughter developed some complications, which meant he had to have some of the tests again.
 

Darren was given x-rays, blood tests, urine analyses, an ECG and various other tests. It took two...

Darren was given x-rays, blood tests, urine analyses, an ECG and various other tests. It took two...

Age at interview: 39
Sex: Male
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Basically x-rays, nothing too intrusive or nothing like that. What is it? I’m just looking at my thing [notes] there. Yes, blood tests, urine analysis, you just give a urine sample. Blood pressure monitoring. Well you probably do these things whatever condition you’re in or whatever you have, you have to do them.

Yes, ECG which is like you go through this machine and they check your different points. Renal ultrasound, yes x-rays, that’s about it really, not nothing. But it just takes one at a time, another like a couple of things one afternoon, or you might be there for the whole day. And they they’d do various things in the morning and then you have to keep going back for the tests and things. Because it’s your kidney they have to keep monitoring.

Yeah. And did you say all this, this process took up to two years?

Yeah it did yeah. From the initial like first batch of blood tests and things, yes. Because I went for the tests and it took a few weeks to get everything sorted. They agreed to go with it but then my daughter developed a couple of complications, and they had to put it off. So then by that time I had to come back again just to make sure. So this time it was, yeah we definitely set a date and, yeah everything was fine.
 

 

Maggie was told to forget about anonymous donation because it wasn't legal in the UK. She went...

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Maggie was told to forget about anonymous donation because it wasn't legal in the UK. She went...

Age at interview: 66
Sex: Female
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I went to my GP, who referred me to [hospital name], where there’s a transplant unit. Heard nothing for some weeks. Asked for another referral from the GP. And then I had a phone call from a co-ordinator nurse [specialist nurse], who wasn’t very pleasant to me on the phone. Spoke to me as if she thought I had some mental disorder, and effectively told me to forget about it.

So then I thought, “I know, I’ll go over the road to Professor [name].” He’s a neighbour whom I know quite well. See what he thinks, if he can suggest any way forward. I’ve had the brush off from [the hospital]. So he said that he knew a surgeon, a transplant surgeon in [hospital name, doctor’s name], who he thought would take me seriously.

He put me in touch. I went over to [hospital and doctor’s name] and he was very welcoming and nice. He set me up with a battery of tests, physical and psychological. But, at that time, it wasn’t legally permissible for me to give a kidney.

So I bided my time. Couldn’t do much else. And then [doctor’s name] retired. But he said, “I’ll forward all your stuff to a man in [another doctor] who started  keyhole surgery.” And that was a relief, because I knew that [the first doctor] didn’t do keyhole and the large operation is a huge incision, sawing through ribs. And I was prepared to do it, but quite relieved that something a bit more comfortable might be on offer.
 
So then I waited. The law changed. He gave me a date. I had about three months to get ready for this date, which was the end of November 2007. And I had to have more tests in [hospital name] just to make sure that my body and mind hadn’t changed with the passage of time.
 

Some donors we talked to were happy with the information they’d been given about the tests and surgery, but several would have liked more information about the assessment and the results.
 

Di would have liked more information on the tests involved at the different stages of the...

Di would have liked more information on the tests involved at the different stages of the...

Age at interview: 58
Sex: Female
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It would have been nice to have had a chart, detailing all the different evaluations and tests you might have. It doesn’t mean to say you necessarily would have had them, and it might have been you’d have had to have extra ones. But there must be certain basic tests that you have to have. So it would have been nice to have had a leaflet with those on, so you could have ticked them off as you went along.

And then once you’d had an evaluation test, for somebody to contact you and say, “You’ve passed.” Or to tell you what the result is. And “You’ll have to wait probably six weeks for the next appointment maybe…” Really just keeping me informed every step of the way of what’s happening.

At the hospital it was wonderful. Everybody was marvellous, really uplifting and so helpful. Once I’d left the hospital, it was as though I didn’t exist and I had no contact.

Although I did have a phone number, everybody was answer-phone, saying ring someone else who was on answer-phone. And nobody ever got back to me. It was only right at the very end I managed to find an e-mail address, and even then it took weeks to get a response.

So that could have made it a much more enjoyable experience for me. But then, at the end of the day, it wasn’t about me. I wasn’t there to enjoy the evaluation test, although it would have been nice to have felt on top of the world the whole time. It was about the recipient at the end of it. So I think it was that that kept me going. But, yes, the communication could have been a lot better.
 

Following approval, the name of a non-directed (anonymous) donor is put forward to a national allocation scheme and matched to a suitable recipient. This works in the same way as deceased donation, where a donor is matched to a patient on the national waiting list.

Last reviewed May 2016.
Last update May 2016.
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