A-Z

Organ donation

Telling family, friends and other people about donating a kidney

Some people we interviewed had donated a kidney to a family member, such as a child, parent or sibling. The whole family knew about the ill health of the recipient and were supportive of the donor. Harmanjit said that both she and her sister offered to donate a kidney to their father as they did not want to see him having to go on dialysis. Margo said donating a kidney to her brother was ‘a big deal’ for the whole family and they were all waiting at home after she and her brother came back from the hospital.
 
It can be difficult telling family, friends and other people if a donor is choosing to donate to someone outside the family or to someone completely anonymous, as in the case of non-directed (anonymous) donation. Several people discussed their thoughts with family before going ahead with tests. Once family members were reassured that the risk to their relative’s health was low, they were often supportive.
 

Maggie’s family were surprised at first but, when they knew the risk to her health was low, they...

Maggie’s family were surprised at first but, when they knew the risk to her health was low, they...

Age at interview: 66
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

After the dinner you came back and you discussed it with your daughters and your husband?

Yes.

What were their reactions?

Well, it was a surprise to think that something that hadn’t happened before, which looked like a threat to me, might be in the offing. But, after I’d investigated what the risk was, and I think at that time, and possibly still there hasn’t been a death from a live donor because you’re so carefully screened. I had a fabulous range of MOT tests, and I’ve come out very healthy. And they wouldn’t have had me otherwise.

So I think they then realised that it would just be Mum having an operation and, after a few weeks, back to normal. Because in our bodies we’ve got two eyes and two kidneys, and in each case we can get by with one without any detriment to our health. And I haven’t had any complications.
 

 

When Chris had an approximate date for surgery, he emailed his three children to let them know...

When Chris had an approximate date for surgery, he emailed his three children to let them know...

Age at interview: 73
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

Once I’d got an approximate date, I then discussed it with my three children, or I sent my three children an e-mail saying what I was going to do. And they all responded positively.  My wife had been careful not to go either way, to say “You must carry on and do it,” or “Don’t do it.” She knew I was going to do it anyway I suspect. But, if she’d interfered or expressed strong emotions about it, then of course it would have made life difficult for myself. It would have made it, affected my, it might have affected my decision. So she very wisely just kept neutral. 


One of them [children] is a consultant surgeon, a urologist, so he knows quite a lot about kidney transplants. So he was no problem. And the other two, no they were perfectly content. And they know I’m a bit mad because I often go off and do funny things, so I just follow what I think is worth doing.

No, they were fine. Absolutely no stress and no tension. It didn’t create tension within the family. I think my wife must have felt a bit, must have felt pretty anxious from time to time, but she never showed it.
 

Understandably, some family members were concerned and wondered if their relative was doing the right thing.
 

Wallee’s mum didn’t want him to donate. Friends were also wary. Telling other people made him...

Wallee’s mum didn’t want him to donate. Friends were also wary. Telling other people made him...

Age at interview: 58
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

You talked to family and friends and you said that most people were against it?

Well, in a sense they were not sure that it was a good idea. I won’t say they were stubborn and stopped me. But they were, I can’t say everybody, I’m sure there were some people who were saying, “This is a really amazing what you’re going, what you’re willing to do.”

But I remember a lot of people were very cautious saying, “I’m not so sure this is a great idea.” And my mother was completely against it. And she just, you know, I had to kind of pacify her. I guess she was concerned. That’s why, people were concerned about the implications for me. But what’s interesting is that it makes you realise how little people know about what’s involved.
 

 

Di’s son was unusually quiet when she told him her plans to donate. He later did some research on...

Di’s son was unusually quiet when she told him her plans to donate. He later did some research on...

Age at interview: 58
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

[My ex-husband] I knew would be right behind me, whatever I wanted to do he would know I’d already done my research. And I wanted to do something, so I knew he’d be behind me.

My son I didn’t tell until after the second evaluation because I thought there’s no point telling him if they turn round and say, “Well sorry, we’ve done initial tests, it’s no good. It can’t proceed.” So I waited until I thought this looks like it is going to go ahead, and I then told him what I wanted to do.

But I made it very clear that it wasn’t the be-all and end-all. I didn’t want to put him under any emotional pressure to say he had to support me. I almost made light of it, and said, “This is something I’d like to do, but it doesn’t really matter, you know. What do you think of it?”

And he said, “Yes, presumably you’ve looked into it?” So I said, “Yes.” He said “Oh fine.”  A bit later though, after a few more evaluations, he was being very quiet and I found it hard to talk to him about it. And I said, “Look, I’m coming back and telling you about my tests, but you’re just not saying anything. Not quite what I expected.” I said, “Are you happy with this?”  And he said, “Well no, I’m not actually.” So I said, “Fine.” I said, “At the weekend we’ll get together and we’ll go over,” and I said, “Really, I’m not that bothered if I don’t do this because there’s many other things I can do in this world to help people. But this just happens to be one of them. You, my family, comes first and always will do.” So I said, “If you really don’t want me to do this,” I said, “I won’t, and it won’t matter.” But I said, “Now is the time to say, not when it gets much nearer.”

Anyway, at the weekend we got together and he’d obviously then taken his doubts seriously and done lots of Googling. I don’t even know what they were, and he said, “Don’t worry, Mum.” He said, “I’ve looked up on the internet and I don’t have any worries at all, and I’m very proud of you.” So he was right behind me. So that was good.
 

After assessment and approval, some people said that they told a few close friends and colleagues that needed to know. Mostly, friends were supportive, though some were surprised and negative. One woman said one of her friends was ‘antagonistic’ and another was very much against her donating.
 

Some friends were supportive but two close friends were disapproving. Maggie wondered why this...

Some friends were supportive but two close friends were disapproving. Maggie wondered why this...

Age at interview: 66
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

Two of my closest friends, who were school friends, were pretty unpleasant with me about it. And I’ve talked to other anonymous donors, who’ve had a range of reactions from their friends. Some of them very supportive, and saying “Good for you, go and do it if you want to.” And others who were very tight lipped and disapproving, using words like, “Wrong,” it was, “Wrong to do it.”

But when I pressed for why it was wrong, no coherent explanation. And other people have suggested that some people feel challenged by that and aren’t very happy to be challenged, and react with resentment. And I can think of no other explanation in the case of two school friends.

But other school friends, because I still have several school friends who are amongst my best friends, have been very friendly and nice. So it hasn’t had, you know, I haven’t, and amongst the people I was working with, I was working full time then as a teacher, I’ve since retired, I didn’t get any negative reactions.
 

Donors also had to tell their employers because they would need to take time off work (See Work and finances). When they were on sick leave, other colleagues often also found out because the donor was not at work. Colleagues were often inspired and supportive. Some, however, did not seem to know what to say and had been very ‘silent’.
 

Paul’s immediate family were supportive. Other relatives and colleagues seemed uninterested. He...

Paul’s immediate family were supportive. Other relatives and colleagues seemed uninterested. He...

Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

I discussed it obviously with my wife and immediate family. No one outside my wife and children were really aware what was happening. I had eventually to tell my colleague at work who covers for me in my absence because I was going to be away for a time, so that had to be sorted out. But, on the whole, I spoke to very few people about it beforehand.

I was confident in my own mind that it was something I wanted to do. I felt it was the right thing to do. My wife was happy with me to go ahead with it. I don’t think she ever tried to dissuade me. And I think my children, who are mostly adults now, they’re in their twenties and late teens, were accepting that it was something that was going to happen. So I didn’t have any doubts or arguments about it beforehand.

Yes. And what kind of reaction did you get from your colleague when you told your colleague?

I’ve been a bit surprised by how a lot of people, I mean other than family members, who I did tell. I mean my brothers and sister and other people, how little comment has been made, interestingly.

I’ve been very surprised that people haven’t been more interested and I’m not sure why that is. I mean maybe a little bit of embarrassment, maybe it’s something that just seems a rather strange thing to do to a lot of people. And I think that’s perhaps it.
 

 

Local people read about Chris’ donation and often asked him about it. His colleagues, though,...

Local people read about Chris’ donation and often asked him about it. His colleagues, though,...

Age at interview: 73
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

It was in the local paper and one or two people in the village made various comments to me, as if I’d been really put through the mangle. And I said, “Well it wasn’t a big deal actually. So it wasn’t a matter of being brave at all, it was just a matter of wanting to do it.”

And friends or colleagues, did you tell them afterwards or,

Yes. I didn’t discuss it with them before. Well, there was a funny thing. If you believe in things strongly, then you’re, to some extent it’s pretty, it’s quite a lonely business. I campaign about various things, and it is a lonely business. And one of the things you notice most is the silence of your friends. You may only notice this when you’re very much older and realise how was it these people that you loved for years and years and years don’t respond to when you talk about something that means a lot to you.  Some campaign or some something that’s happening overseas maybe, and you can’t understand how is it that they don’t see that this is something important and worth attending to. But that’s the way of the world. And there’s no point in ditching your friends because they don’t see the same way. But the silence of your friends is one of the, is a hard, a slightly hard thing.
 

 
Some of the people we interviewed chose not to tell anyone outside the family until after surgery. Maggie wanted to keep her donation quiet but, because she was one of the first people in the UK to donate to an anonymous recipient, she was contacted by the press several months before her operation. Like some other non-directed (anonymous) donors, she was wary of telling other people in case it was misinterpreted. One donor said it could be misconstrued as ‘showing off’. However, most of the donors we talked to were keen to raise awareness of living donation and organ donation. In order to do this, some of the non-directed (anonymous) donors had taken part in newspaper and television interviews about their experiences.
 

Annabel wrote about her experience for a medical journal and it was featured in a national...

Annabel wrote about her experience for a medical journal and it was featured in a national...

Age at interview: 64
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

About six months after the operation, I decided to write about it. Because I work for the British Medical Journal I decided to write a piece for that, a section called “A patient’s journey.” So I wrote about it for that. A pretty serious piece and, whenever they do these ‘patients journey’, they also always have the surgeon or the doctor giving his view, his or her view, of the procedure. So we did that. And that appeared.

But it was actually press released and the Daily Mail saw it and rang me up and said would I be prepared to write it for the Daily Mail, a version of it but a slightly more emotional version as they wanted a bit more of a, you know, “Were you worried?” and things. So I did write a, it wasn’t really that different to be honest, but I did write a slightly more personal piece for the Daily Mail.

I showed the article to [my friend] and [her husband] and said, “Is that alright?” I’d changed their names to John and Mary or something, but they said no, they didn’t want to be called John and Mary. They’d rather be called by their actual names. So we put their real name in it, and then actually the Daily Mail also said, “Would you consider having a photograph taken with [my friend]?” So we did; we had a photograph taken and that was quite nice.

Obviously it’s a good thing in lots of ways, because then people realise that you can do it and that, you live to tell the tale and feel fit and well afterwards. And that it’s not a big deal. It is quite a big deal, but that it’s not, it doesn’t have any long term effects, other than good ones.
 

 

At first, Di wanted to be anonymous. When she realised her story could raise awareness, she...

At first, Di wanted to be anonymous. When she realised her story could raise awareness, she...

Age at interview: 58
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

To begin with my blog was done anonymously because I’m not one that wants a pat on the back. And it makes me feel uncomfortable when people say, “Oh well done. What a wonderful thing to do.” Because there are so many silent people out there that have done other things that far outweigh what I’ve done. But I just, I don’t like praise.

But a newspaper did contact me and they changed my mind because they said, “If you really are as passionate about organ donation as you say, you need to get your story out there. But people won’t do it unless you put a name and a face to it. You can’t stay anonymous.”

And I hadn’t actually looked at it from that point of view, that to get people to sign the organ donor register, or even consider doing a living donation, I need to get my story out there. And it has to be believable by having a person behind it. So that was when I changed my mind in wanting publicity. But with it I also want about organ donation, so people know, you don’t have to actually donate now while you’re alive. That is something that is for each individual to think about. But it costs nothing to sign the donor register, but you can save many more than one life. You can save so many lives, and what a wonderful legacy to leave behind.
 

 
A few people had got together with other living donors and formed a new organisation specifically to raise awareness of living kidney donation.
 

Paul, a GP, has helped set up a group that aims to raise awareness of living donation. He is keen...

Paul, a GP, has helped set up a group that aims to raise awareness of living donation. He is keen...

Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

I think that one of my chief tasks I’ve set myself in a way, I mean apart from everyday work, is to do some of the things that we’ve discussed about encouraging other people to look at the possibility, because it’s my belief that there are probably quite a lot of people who would be happy to consider donation. But I think there are certain barriers. The barriers are things like lack of information, so that’s something that I would like to address. There are barriers in terms of people thinking it’s a very odd thing to do. And I think embarrassment and uncertainty are quite strong deterrents.

So if we can present a group of ordinary people as it were, who’ve gone ahead with this, then people will perhaps think, “Well actually it’s not such an extraordinary thing to think about. It’s not such a bizarre… I’m not necessarily an oddity to be going forward with this.” And I think that if we can help to put this information about and make people aware of it, then, and I feel that there are likely to be a significantly larger group of people who would go forward, which would have I think substantial benefits.

We all know that there is a severe shortfall in the number of potential donors. We know that living donors have advantages over donations from people who’ve obviously lost their lives. So I think that increasing the number of donors has a huge potential. Substantial impact on the health for a large number of people.
 

All of the donors we interviewed were fit and healthy again after surgery. Donating a kidney had not affected their relationships with other family members. Their relatives were often proud of them and pleased that they and the recipient were both well (see The recipient).

Last reviewed May 2016.
donate
Previous Page
Next Page