Di - Interview 31
More about me...
Di donated a kidney to an anonymous recipient in 2010, when she was 58. She was aware that living kidney donation could take place between family and friends and felt certain that she would be willing to donate a kidney if the need arose. A friend in America had donated a kidney altruistically and Di said she felt ‘bowled over by the whole idea’. She did some research on the internet and found out that, in the UK, it was not legal to donate a kidney to someone who was not a relative or friend. However, whenever she heard or read about the subject, it always stood out in her mind.
Later, Di developed cataracts in both eyes and was made redundant at work. While off work, she watched a news programme on the first altruistic non-directed living kidney donation in the UK. This is when a healthy person, after thorough testing, has surgery to donate one of their kidneys to a patient who needs a kidney transplant.
Di did some more research on the internet and was pleased to learn that altruistic non-directed kidney donation had been made legal in the UK. She was now even more determined to help someone have a better quality of life and went to see her GP. He contacted the hospital specialist nurse [co-ordinator], who phoned Di and they made an appointment for an initial consultation.
Di said the assessment and tests took eight or nine months in total, a process she did not know much about beforehand, including how long it would all take. She found the long wait between tests stressful and did not know why she was waiting or when she would have the next test. For one particular result, she waited six weeks. Di said that, although she started having tests in 2009, the donation did not take place until 2010, sixteen months later.
With hindsight, Di said she would have liked ‘more information as to how many tests and what they would be at the start of evaluation; a better updating of time scale during the evaluation process and more information regarding recipient matching. This would have made the whole process less stressful. Also, offering to let me speak with an existing donor would have helped as it was a very lonely experience with no one to talk to who understood.’
All the test results showed that Di was healthy and eligible to donate a kidney. The first potential recipient turned out to be an incompatible match, as did the second. Di had not been prepared for this and found it extremely upsetting and stressful. Fortunately, the third person was a good match.
Di spent three days in hospital, where she also met a patient waiting for a kidney / pancreas transplant and his wife, a meeting that had quite an impact on her. They talked about the effects of kidney failure on his life and were very grateful to Di for being a donor and making such an important difference to someone else’s life.
The surgery went well and, back at home, Di’s ex-husband helped look after her during the first week. Her son also lived nearby and was able to help if she needed anything. Di said she took great care to look after herself and gave herself as much time as she needed to recover. A follow-up appointment six weeks after surgery confirmed that she was doing well.
Soon after surgery, Di received a letter from the recipient of her kidney. She was delighted to hear that, since the transplant, he had felt ‘fantastic’. Di described the whole process as extremely enriching and is now involved in raising awareness of living kidney donation through the media and her blog' http'//livingkidneydonation.co.uk/altruistic-kidney-donation-in-the-uk.htm
Hearing from the recipient that they felt fantastic was brilliant news for Di. She wrote back...
The hospital told me not long afterwards that they’d heard the recipient was doing fine, which was good. And then I got a phone call several weeks later from my co-ordinator [specialist nurse] saying, “I’ve got a letter sitting here.” Oh, “from your recipient. Would you like it?” I said, “Yes please.” I said, “Wait, yes, but read it first. What if it gets lost in the post? You know, read it.”
We were both in tears, we really were. I mean yes they thanked me very much, said what a special person I was and I’ll always be in their thoughts. They can now start to live as a family again. But what got me, and even though I’ve only got to hear the word, that’s all I think of, was at the end of it they said, “I feel fantastic.” Not, “I’m feeling well,” or, “I’m okay.” But, “I feel fantastic.” That one word told me everything I needed to know, that they weren’t struggling to cope with the new kidney. They weren’t whatever, they were feeling fantastic. That just said everything to me, that’s all I wanted to know. And that was brilliant.
I wrote back and thanked them for the letter, and said I was just over the moon that they felt so fantastic. It was more than I could have hoped for. And that they’re always in my prayers and thoughts. And that I hope that they have a long, happy, healthy life ahead of them.
Dis son was unusually quiet when she told him her plans to donate. He later did some research on...
[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.
Di describes the psychological evaluation she had before becoming a donor. After passing this,...
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.
At first, Di wanted to be anonymous. When she realised her story could raise awareness, she...
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.
Di encourages other people to register for organ donation and talk about their wishes with family...
When you’re dead your organs are no good to anybody, to you. They’re buried or they’re burnt in cremation. So that’s the end of you. But you could save up to 9 people’s lives just by signing on the Organ Donor Register. And give 9 people back to their families. And that is a huge legacy for you to leave to your family. It’s hard times.
You know if something happens to you, and you’ve got your family around you. It’s very, very difficult. So you have to also make sure that they know of your wishes. But I know from stories I’ve read and articles I’ve read that where next of kin have agreed, yes, please help somebody else with their organs, they have never ever regretted it. They have been so pleased that some good has come out of their loved ones death. And saving several lives, what better gift could you give to anybody than giving someone their life back.
So I would say you have every reason to sign your name on that line. And please go ahead and do it and help save these people when the time comes.
Di feels that information about organ donation and life on dialysis should be discussed in...
It would be nice if say schools and sixth forms or colleges actually get to meet people on dialysis, face to face; actually get to see them on a dialysis machine, hear their story, hear what their life is like, hear how awful their life is, hear their families, the carer’s and what their life is like. I think it would totally and utterly change so many peoples’ idea of what being on dialysis is like.
I know I feel ashamed now to think that, before I went into this, the only pictures I’ve seen are people on the special chair, hooked up, but with a big smile on their face, obviously for the camera. And you tend to think, “Oh well, they’re okay.” But they’re not, no way. And I think people, the youth of today are the organ donors of tomorrow.
And I think they need as much information now. And one day it could be them on that dialysis chair, wishing someone had signed the organ donor register. And if nobody ever signed the donor register, just think of the thousands and thousands and thousands of people that just needlessly would die every year when they could be saved. And it’s up to you, me, our friends to save these people. And we can do it so easily, so, so easily.
It took about 16 months from the first appointment to surgery. Di never really knew which test...
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.
Did you ever kind of think, “Oh, why am I doing this?”
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.”
Di would have liked more information on the tests involved at the different stages of the...
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.
Di was upset when the first recipient didnt match. She had no idea this could happen. The second...
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.
Di had more blood and urine tests, an x-ray and an ECG. She also met some of the medical staff...
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.
Di was moved to tears when she spoke to a transplant patient and his wife. They were very...
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.
Di was over-cautious and had no problems during recovery at all. She ordered her shopping online...
[My ex-husband] was only here for the first week. After that I was on my own. But my son lives just walking distance so I knew that if I found something needed doing that I couldn’t, I just had to ring him and he’d be along at some point.
Things like going shopping and lifting heavy bags, I was over cautious and I think you should be over cautious. When the doctors said a week, I called it two weeks. When the doctors call it two weeks, I called it three weeks. I thought the last thing I want is to be the odd case where things don’t quite heal as quickly as possible, so I go doing something that causes me injury because not only would that be not good for me, it wouldn’t be good for the living donor programme either. So, yes, I was very over cautious. And there were no problems at all.
I got my son to do, well I had shopping delivered. And I got them to actually bring the shopping into the kitchen, onto the worktops for me just to unpack.
Was this the online shopping?
Yes, that’s online shopping, yes. And housework, I can’t remember when I started that, probably the end of week two. And then I was just very careful, say go slowly with the vacuum because you’re being pulled that side. And so I really just took it very slowly and I didn’t have any problems, or feel there were any problems or was concerned about anything. But yes, the answer is don’t rush. Don’t rush, just take things slowly.
Di met some wonderful people and found donating a kidney an enriching experience. Helping a...
This whole experience, even with its hiccups and personal stresses, which is just me being impatient really, has been a wonderful experience. One that I would gladly do again and again and again and again, even with all the hiccups. Because the reward at the end, not only for the recipient but for me, has been something that’s going to stay with me forever. And what greater gift can you give anybody than give them their life back, or give them back to their family. There isn’t. Yet it’s so easy to do.
And can you just tell me a little bit more about these personal rewards, because someone else also in their interview said how enriching an experience it had been for them.
I think a lot of the rewards, the enriching rewards, have been in the people I’ve met rather than the actual deed of donating the kidney. It’s meeting people, like there were two people I met who had just had kidney/pancreatic transplants. And hearing about their life. One had been a diabetic since a child. They were now in their thirties and had been on dialysis for years.
And speaking to their family about what it means to them and the awful life they’ve all gone through. And then the man I spoke about who thanked me for donating to someone else. And other people I’ve spoken to, they’re just so brave, just so courageous. It puts me to shame really.
And they have so much hope. That is the one word they have' hope. Hope that people like me and other people can find it in themselves to either sign or to give a kidney, to help save them. And knowing that I have done that, and meeting these people, yes it just really enriches your life.
It’s very difficult to say exactly how. You feel more fulfilled for having met these people, of understanding their life, of having a small part in the whole picture of the whole thing. They were feelings I never expected to ever have. And they’re the best feelings that you could get.
Di was unemployed when she had her operation. She incurred petrol costs and car parking charges....
I was unemployed, although I did have some savings to live off. Yes, you have got expenses. I had to have car park charges, which aren’t cheap, and then other charges. I was never offered for the expenses to be paid back, yet somebody I’m now supporting who’s donating at a different hospital has been told that if their work won’t pay them, if they produce payslips, submit them, they’ll be paid and they can be paid expenses. Nothing was ever mentioned to me.
Now I think it is important that people are told out of pocket expenses will be covered, which would include things like petrol, car parking charges, because it adds up over the period of time. Had I not been able to afford it, I’m not sure, I’d have had to have asked them. I don’t know quite, maybe then if you ask they say “Well, yes okay.”
So some information on that. But some support with their parking expenses and time off work if that’s the case?
Yes. I mean certainly people need time off work. I’m not quite sure how the law stands on who pays them for how much time. Because, if you have an open operation, you could be off for ten weeks or whatever. Whereas with the job I’m in, I could have gone back to work I suppose after three. I had heavy lifting to do at my job had I gone back, so I suppose four weeks I would have left it. But no, for me it wasn’t an issue. But it would have been nice to have been offered expenses.
Di was interested in donation for some time. When she learnt it was legal in the UK to donate to...
I knew you could donate to family or friends. I once had a conversation with other people about it and, without hesitation, I knew that I would donate to somebody if they needed it. So that wasn’t a problem. It wasn’t until a few years later that a friend of mine in America told me that she was about to donate to a stranger. Not quite the same as over here, in that she actually saw his name somewhere as needing a kidney, so she put herself forwards. They did actually meet before and got to know each other then.
I don’t know, I was just so totally bowled over by the whole idea that you could just give your kidney to somebody who needs it, not wait until perhaps a relative needs it who may never need it.
So I did some Googling, and found that it wasn’t legal in this country. So really I put it to the back of my mind. But loads of things kept reminding me. My ears would prick up every time I heard something to do with kidney donation, or it seemed to be everyday I was hearing something which I never heard before.
And then I was off work for quite some time because I suddenly developed cataracts in both eyes. It was almost over a very short period of time, and they laid me off work because of it. And while I was off work, it was advertised, not advertised, it was on television about the first altruistic donation in this country.
And I thought well it can’t be. It’s not legal. I did a quick, another bit of Googling and it was. It had suddenly, without me even knowing, become legal. And I thought, “Oh my goodness,” and everything seemed to just fit in because before I worried about, what if it becomes legal? What happens about my job? They’ll never give me the time off. And what about this? What about?
There seemed to be something holding me back even though I didn’t know what. It just seemed that everything had fallen into place and now was the time to do it. So, although I can say my heart told me I want to do it, but I knew I had to get my brain working and find out. Okay because you want to do something doesn’t mean to say that it’s the sensible thing to do, or it’s the right thing for you.
So I did some more Googling about the operation, the evaluation tests, as much as I could do. And it was strange because the more I Googled, the more determined I was to do it. Nothing I found put me off at all. But I’ve come across people on dialysis or people who’ve just had transplants, people waiting, and it was just an eye opener.