Organ donation

My name is Teressa Tymkewycz and I’m a specialist nurse for organ donation. I’ve been doing this job for over 10 years now, so I’ve met many, many families who have been brave and generous enough to be able to consider organ donation.

Our role as a specialist nurse for organ donation involves me speaking with families and also the staff of intensive care units and other hospital areas.  The hospital will alert us when there is someone where there is some decisions to be made at end of life.

So that will involve us going in and working with the local doctors and nurses and we will meet with these families to give them some information. And they will no doubt have some questions to ask us about what organ donation involves. So we spend some time with them going through that.

But then also we will, once we’ve agreed that they want to consent or we will support them if they decide not to go ahead and donate. And we will support them through what happens next, and that is us finding suitable recipients, matching the organs which again, depending on the age of the patient, because we have some elderly patients who are perhaps maybe 70, 80 years of age, so we will match up the organs appropriately by speaking to other specialists up and down the country.

And then we’ll also, they may be there with their loved one during the organ donation operation in that hospital, and then we’ll provide some follow up information either in person, by telephone or by letter  through the later stages.

And your role is quite different to that of the nurses who work with the recipients isn’t it?

Our roles as specialist nurse for organ donation is quite different and separate from the other specialist nurses, that’s the recipient co-ordinators who very much look after the patients whilst they’re preparing to go on the waiting list for their organ transplant. And then also looking after them after they’ve had that transplant operation.

Regarding organ donation, well my father had a kidney transplant when I was, he was on dialysis, and then he had a kidney transplant when I was very young. He was only born with one kidney and he was basically very ill. And latterly he went onto dialysis and he got a kidney transplant that worked for about a year and a half. And also then the body rejected it and then he got another one, and that rejected right away.

But there is a big difference to our quality of life, the whole family’s quality of life when he got a new kidney. Before that we were tied to a kidney machine, or a dialysis machine three times a week and we were limited with holidays. We couldn’t really go anywhere. I think the only place we could manage was St. Andrew’s, and there was a Kidney Patient’s Association house. But everybody else was going away to Spain, places like that, and the farthest we could go, they didn’t have, it wasn’t so advanced as it now.

Sadly, my dad died when I was eighteen and that was a long time ago, over 27 years ago. When I got married, I had two children, in fact my two children openly discuss things with their grandparents how they’ve only got one gran and one granddad from another side, but they don’t have four grans or granddads like other people have. And seen photographs of my dad. And children being children are very inquisitive and want to know what happened to them and why did they die and all these kind of things.

So we’d openly tell them about my dad and about how he died and why he died; and because he was so ill, and the difference that an organ, he got a kidney and that helped him for a long, for a year and a half he had, made quality of life a lot better.

It was just one of these things where it was just discussed and later on, it was maybe a couple of days later, all of a sudden my son and my daughter had probably been discussing it. And we came in one day, or they came in one day, and my daughter said, “Look, just to let you know, if I die I want my organs, or I want my, all my hearts and liver and my kidneys to go to other people to help them live.”

She was only 7 at the time and we kind of laughed, not laughed at her, we didn’t discount it but we said, “You know, that’s not going to happen to you because we’re the old people in the house. And you’ll be telling the doctors to take our organs and to give the organs to other people.” And she said, “Well I want that to happen anyway.” So we had, no she was like, “Okay.” And we put it to the back of our heads because you never ever think anything like that is going to happen. Later on down the line obviously that kind of did happen.
 

He [doctor] then said, “Have you ever given organ donation any consideration?” And at that moment I remember thinking, John has carried a donor card from the age of 16. He came home from school at that time and said there had been an educational input about organ donation, and he talked to us about it. And I said to him at the time if that’s what you would like, I had never even, nursing I hadn’t actually never thought about organ donation I have to say.

But if that’s what John wanted to do, he said that’s what he wanted to do, but he didn’t want that, you know should he die, he didn’t want his eyes to be removed. And he’d crossed that out on the card, so we knew that.

So when the doctor mentioned organ donation, all of a sudden I was like, “Oh yes, John carries a donor card.” But it just did not hit me that my John had died. I was just, I was so proud to say, “Oh yes John carries a donor card,” but the realisation, what did those words mean, what did they mean?

So obviously they knew that all, well it’s not all that obviously they knew, I had to carry out John’s wishes and I didn’t have to make a decision whether I wanted John’s organs to be donated. John had made that clear that that was his wish on his death.

And the one thing that I needed to do, even though I had given the doctor the information that yes John carried a donor card, but the one thing that’s so important for me, was that I’d actually found John’s donor card.

I know that wasn’t necessary for the clinicians at all, but it was so important for me, because we hadn’t talked about organ donation for a long time, and I knew when John was sixteen but this was eight years later. I think somewhere in between those years, there may have been something in the press and we would have talked about it, but we hadn’t for quite some time. And I didn’t think that John would have changed his mind and thought, “Oh no,” and perhaps ripped his card up. But I just needed to find, I wanted to see John’s writing, I just wanted to have it.

And the first thing that I did was to look for John’s card, and I found that and it was so awful because, in as much that I would clean John’s bedroom and I would change his bed and I would clean his windows and all the rest of it. I never went through any of his personal things.

So it was so foreign and just awful, I just needed to do it. So I started with his wallet and it wasn’t in his wallet, but it was actually in his driving licence, inside his driving licence.
 

First thing I remember was a couple of weeks before Rick actually died. We’d had a conversation. There was an interview done on local television with this couple’s daughter and she’d not been very well. And they were appealing for organ donation. And I’d said to Rick at the time, “Oh would you donate your organs?” And he said yeah he would because there’d be no point in keeping hold of them. But he wanted cremating, not burying. So he felt that your body’s burnt, so the best thing you can do is maybe donate them.

So it was just an observation on the television and that. I didn’t give it five, ten minutes thought. We’d just had this conversation, but when I look back after a couple of weeks later, that gave me the knowledge really to make the decisions that I made.
 

The day before we had all started talking about the fact that things hadn’t looked good and we had talked about organ donation. It was something that we’d all talked about as a family, and it had started many years ago with Anthony Nolan and his story.

And my first husband and I at the time were very taken with this story. We were just drawn into it, and just felt so incredibly sorry for this family. And we both joined the register and so, in many ways, that made it easier for us to sort of talk about it at this point.

And I think it was probably on the Saturday, we just had decided that if the worst came to the worst then we would donate Kristian’s organs.

So on the Monday, we stayed with him all through Sunday night, and on Monday the consultant spoke with us and said that there would be a series of tests to determine whether Kristian was brain dead. And those tests would be carried out the following day. And they suggested that we went home and I think it was probably the following day when we went back we spoke with the transplant coordinator.
 

So they took us up to ITU. We met the doctor up there and he reiterated what they’d said down in A&E. And said that, in the morning, they would do the brain tests to confirm that he was brain dead.

I turned to my husband because, when he was about eight, Lyall had gone through my purse and got these cards, “What’s this for? What’s that for?” And I had my organ donor card in there.

And I explained to him about it and said, “You know, if anything happens to me, you’ll have to organise it because your Dad will be useless.” And, because I was in the medical profession, we watched a lot of medical programmes together so he had some idea.

And so I said to, turned to my husband and said, “Well look, Lyall had got a donor card. Have you any objection?” He said, “No.” So I turned round and I said to them, “Well, if the worst comes to the worst, we are happy for you to retrieve his organs.” Because I think there must be nothing worse than having to turn round to a distressed family and ask them. I mean, being a midwife, I’ve quite often had difficult things to tell people but I can think really of nothing worse than that.
 

[Husband’s name] and I decided that we thought that if we lost Kirstie we wanted to donate her organs because we knew that it was what Kirstie would want to do.

We made our feelings felt to the medical staff at the hospital in [place name]. On the Wednesday again, they pack no punches, they told us that they thought that Kirstie was going to die.

And we discussed the organ donation with our other daughter and with [Kirstie’s partner] as well. And then on the Wednesday evening they told us that they were going to transfer Kirstie up to a London hospital. Which they did overnight on the Wednesday night.

On the Thursday we had a meeting with the medical staff of the intensive care, and again we made it known to them that we would, we wanted to consider, or we were considering donating Kirstie’s organs.

We then had a meeting with the donor co-ordinator and decided what organs we wanted to donate. There was a bit of a conflict between us and [Kirstie’s partner] because he was a bit sceptical. He didn’t know that he really wanted us to donate her organs.

But, as much as I’d said to him from day one, I would always talk to him. We would always discuss everything that needed to be discussed, because I was Kirstie’s next of kin I would overrule, if I wanted something and he didn’t, I would overrule it.

People often say to [my husband] and I how brave we are. We weren’t brave at all. It was Kirstie who was brave and she’d also signed up to the donor register when she was 15 because she had a, we bought her a little moped for her 16th birthday. So she’d applied for her driving licence and she’d filled it in on the driving licence. So she was the brave one, not us. And we just followed her wishes at the end of the day.
 

The doctor also goes, “Have you ever thought about organ donation?” And I goes, “Well yeah, it’s extending Will’s life, I will donate everything.” He goes “Are you sure about that?” I goes I don’t need to think, half the, you know, whatever amount of people could benefit by that, fine. Will can’t sustain, my reason behind it was, well Will couldn’t sustain life any longer so it’d be a good idea for other people to benefit from that.

Because after I’d known, well Will’s body is just a shell. There was nothing there sort of thing. The spirit had gone, and all we were just looking at is the shell, so recycle the shell sort of thing, it made a lot of sense to me.

I literally signed the forms to say yes lets go for it, but we still had to get hold of his Mum. We decided at that time, I suppose it must have been about quarter to two, quarter to three in the morning, that we would not contact the Mum until the following morning, or [name], my daughter, until the following morning. Give them a good night’s sleep. Will wasn’t going to go anywhere, that’s a certainty.

And so what we did was then, we decided that we’d start doing the phone calls about half seven, eight o’clock to say that Will is clinically dead basically, stem, well what they were saying was Stem Cell dead. So it was a stem cell death it was.

So we started that process. Mum came up. I said Will had passed, there’s just no way is he coming back. She wouldn’t believe it. But I said I wanted two consultants to come along just to check to make sure Will had passed, you know.

She goes, “No, no, he’ll be fine.” And there was just, “He was alright a couple of weeks back, although he said he wanted to go on all the...” He’s gone. It’s as simple as that. I just wanted to know the person who dealt him the drugs that’s in his system so I can sort them out, well. “Because they’ve also mentioned organ donation. Do you agree to that?” She says, “Well, I’ll only agree to organ donation if you agree to burial. And I’d much prefer to be cremated, even er….” so I said, “Well I’ll compromise on that then. Because I’ll agree to burial if you agree to organ donation.” So that’s what we did.
 

We had discussed it in the past because, you know Jen being a nurse, it was something that, because she did work for a while at the [hospital name], at the kidney unit. She did work there for a while. And I think that brought it home to her and we’d discussed it in, as you do, nothing serious. But she always said, “Oh well, that can, whatever of mine they want, they can, they can have in that respect.” So yes it was something we were aware of. And something that Jen definitely would have, was prepared to do. Yeah, there’s no doubt about that. I think working at the [hospital name] for that time, seeing people on dialysis and all the rest of it, I think that brought it home.

The day after they’d removed her organs, my son had actually gone to the hospital to get the paperwork sorted out. And he was approached by a member of the neurological team and they asked if he would be, or we would be prepared to give permission for them to remove Jen’s brain and part of her spinal column for research into Motor Neurone. Well [my son] knew our feelings so, without even having to consult myself, he said, “Yeah go ahead.”

So although her death in some ways was a tragedy, in other ways it was a victory because I lost Jen but she saved two. So we came out on top as it were. The odds were on our side. I know it’s what Jen would have wanted. She’d spent her whole life caring for other people.

But, like so many people, I don’t think she’d ever got round to doing the donor card. I think she’d put it on her driving licence because there was an option on that. But I can’t remember if she ever got round to doing a donor card as such. I’ve done mine on line now because that’s far easier for the hospital to check. All they’ve got to do is just go on line, everything’s there.
 

Martin went to theatre and came back to ICU. And then the bleed started again. So he went back to theatre again. And when he came back that time, we were told that the bleed was just too extensive and there was nothing that could be done.

We were asked immediately if we had ever considered organ donation. We had, as a family, considered organ donation and I know that my husband and myself were already on the organ donor register. Our children weren’t because they were children. We hadn’t actually considered that this was ever going to happen. It was something completely out of the blue.

However, Martin had always wanted to nurse, and we believed and I still believe that it would have been his wish to have done something, if he could. My belief was, even at that point, that if I could save any other mother going through what I was going through, then that was something positive to come out of it. So we immediately agreed.

Martin was then put on life support for the next 36 hours while my husband travelled home [from America], before the retrieval could take place. He was looked after absolutely fantastically by all the hospital staff. And we were looked after as well. We met the donor co-ordinator who explained all the system to us, and kept us informed right throughout the day when she was making enquiries as to potential recipients.

We signed all the paperwork, which was probably the worst point for me because it takes such a long time. You have to sign for each organ individually, and then you have to say whether, if the organ isn’t suitable for donation, whether you’ll agree for it to be taken anyway for research. Which we didn’t agree to at that time.

All I wanted to do was get back to sit with Martin. But these things can’t be hurried and we had to sit and fill it all in. It was about 8 o’clock on the Thursday evening by the time he actually went for the retrieval of the organs. All of his organs were used, apart from his pancreas, which apparently had deteriorated because he was on life support for a long time.

We know that his heart went to a fifteen year old boy, who had only hours to live. And we know that his liver went to a young man with a young family who also was at home waiting to die. At that point it didn’t actually give me any comfort. Because it was far too early.

We came home and I’ve never ever regretted the decision we made. It was the most tremendous tragedy for our family to lose a child who was only 16. But whatever decision we made that day was not going to change what happened to us that day. Martin was not going to make it, whether we said yes or no. But by saying yes we have changed the lives of a number of people and their families and friends.
 

At the end of that conversation organ donation was mentioned, almost thrown in. And I don’t know if that’s down to people being sensitive or if it was just how that particular person just didn’t want to, you know, be full on and what have you. It may have been his way of saying it, but I basically said that I was happy to talk to somebody to find out more.

I’ve always carried a donor card from the year dot, however old you’re allowed to be when you say that you will become an organ donor. I’ve had an organ donation card. The thing that I didn’t know was whether or not John would agree with organ donation.

So my message, my biggest message, would be for people to talk about organ donation. To talk about their wishes, and of course their wishes might be that they would not wish to be an organ donor, which is fine. It’s a free country and we’re entitled to our opinions.
But I think I was in the middle of the most terrible, terrible situation, nobody could help me with that. We knew that we were going to lose John, and I was going to have to make the decision that I didn’t know if he would agree with. And I think that’s my biggest thing, has been my biggest thing, about the need to communicate. And to communicate with those around you so that actually if they were ever in that situation, they don’t have that extra bit, they need to be thinking about in terms of, well do we make those decisions or don’t we? The decision’s already been made.

I know from what I understand people can still decline the organ donation on behalf of their relative, but I wouldn’t imagine that happens very often, because the whole point is that you would want to carry out your loved one’s wishes. So, from my point of view, yeah that would be my biggest messages, is actually let those around you know what your wishes are.

I’m happy that basically John did become a donor, and I’m ninety nine point whatever percent sure that he would be happy with the decision that we made because he basically was a good, kind man who was logical; who would, I am sure, say, “Well, you know if I’m heading out of this world, and bits of me can be used to give other people life, then, or a better quality of life, then that’s got to be the a good thing. So I’ve never regretted it. I’ve never felt that I made the wrong decision.
 

The only other thing that I was worried about was the rest of his [husband’s] family. I’m talking about this to the co-ordinator [specialist nurse] about giving his, letting them take his organs, and he’s not dead as yet, or official. And so you’re always thinking you’re one step ahead and then you’re also thinking well his Mum’s there, his brothers are there, his sister’s there. Everybody who loves him. When all of a sudden they’re going to be confronted with this information that, you know, that Liz has given permission for Rick’s organs to be donated.

So I got [the specialist nurse], I asked her to talk to them because I wanted it to come from a professional point of view instead of just, you have these visions of barging into his room and saying, “Well, you know, he’s got to have these brain stem tests, and if he’s dead then he’s donating his organs.” It would be too abrupt. It would be too much information because all you want to do is, for this machine to be turned off and somebody to start breathing again. That’s all you want.

So she helped me with that. We all sat in the room together with the doctors. They explained the brain tests and they also explained that they didn’t expect Rick to live. And then they explained about organ co-ordination, and that he’d expressed before he died that’s what one of his wishes would be and they’d discussed it with me.

And it gave the rest of the family an opportunity to ask questions, which was a big thing. It was a big thing for me because I didn’t want his family to think that I was making all these decisions because it’s like, that’s his mother. I’m his wife, okay I am his next of kin but that’s still his mother. And everybody knows how mothers feel about their children.
 

I made the decision, I said yes. I spoke to other family members and they all said, “If that’s what you want to do, we’ll go with that.” Nobody had said, “No we don’t want to,” for any reason. We all felt that that was the right thing to do.

In some ways, for me, having our son as he was, I’d had to make decisions for him most of his life anyway. So that was something that came natural to me. But I feel very strongly if someone had said your son could have an organ transplant and he would live, I would have taken it with open arms. And I think, if you’re prepared to take it, then you’ve got to be prepared to give it as well. I’d hate to think that I was the cause of somebody not living because I was too selfish or upset not to go with that.

It’s probably an unusual situation that a parent decides for a child, or especially a man, usually people would make their own decisions on that. But I always tried to do the best for my son as I saw fit and I thought that was something that would bring a real meaning for him. He couldn’t do many things but he could do that and that’s something better than most people do I think.
 

As a family, we’d never really discussed organ donation. But I made the decision myself that I would donate my son’s organs. Then I said to my husband, “Well, you know, we’re going to have to decide, when they ask us about donating the organs?”

They didn’t ask, so we were sitting there and sitting there and eventually a consultant came along and he was telling us that we would have to turn off the life support. And it isn’t a case of if, but when. And that actually the decision is his, not ours to make. We thought it was our decision. But it’s actually their decision. And we were told that if we didn’t do that, we wouldn’t be prolonging his life, we’d be prolonging his death.

So you can imagine that all your emotions are in turmoil and you’re feeling as though you’re on another planet. And then I said to the consultant, “Well what about donating organs?” And he looked at me as if to say, “Well what on earth do I do now?” He seemed surprised and whether it’s because our son had learning difficulties or whatever, I think that was the main reason that nobody approached us. But, because we asked the question, they started putting the wheels in motion.

No one broached the subject with us. As I said, I think it was mainly because our son had learning difficulties that they just assumed somehow, for some reason, we wouldn’t donate organs. But apparently it’s very rare for people to be asked. Staff just don’t know how to do it. They don’t know how to approach it. And if they don’t ask, the chance is gone.

You can’t go back the next day and say “Oh you know, we thought about donating the organs.” It’s something that has to be done then. So I feel very strongly that it would be a good thing if all A&E staff had meetings such as we have, so that they can get to understand what it’s like. It must be very difficult for them, I appreciate that.

And you said that you mentioned it to the consultant yourself?

Yes.

And he was a bit taken aback?

He looked very surprised. He looked as if to say, “Oh xxxx!, I’m going to have to do something about this now.” And he looked a bit flummoxed and then said, “Okay, well I’ll go and see what I can do.” Really it should all have been set up. I feel they should have had a system in place for this because it must happen all the time. But they obviously didn’t.

How long ago was this?

It was in 2006.
 

It was all arranged quickly, and his blood was taken and Paul was fully aware that that’s what was happening on that day [giving blood for research]. And we also asked if Paul could be considered for transplants, even though we knew he was, he’d been so ill we didn’t think it would really happen.

But they said they would find out for us, and later on that day the transplant team came through, the co-ordinators came to speak to us. Took some information, went to speak to the doctors, and then came back to us and said yes Paul would be a candidate, and they told us that they could probably use his kidneys and his liver. Because of the diabetic damage obviously to his eyes and other parts of his body, they wouldn’t be able to use certain parts, his pancreas obviously. But they would be very happy to use the liver and the kidneys.

We knew Paul would want this to happen because he’d always carried the card as a young man and, even though in his later years he wasn’t able to do that, we didn’t have any doubt that he would want to help others, just as he had with giving his blood to the Wolfram family for the research.

So we waited and waited that night. It was a long night because the transplant team had to come from [place name] I believe it was. And they didn’t come until one o’clock in the morning. All during the evening the transplant co-ordinators were coming to us, we had a little room of our own. Paul was asleep on the intensive care unit and we kept going through to speak to him even though he wasn’t awake. And they told us they would be ready in the early hours of the morning to remove the tube.
 

Sandra' The bit I found quite daunting, but at the time I’ve got to say it’s the kind of paperwork you have to do. You don’t realise just how much paperwork you have to go through. We’ve committed to organ donation, that kind of, I felt was a lot. I know I can understand now, but at the time it was quite long and drawn out. And they’re asking all these kind of different questions. I mean even me, at that point, I was thinking, “They need your organs.” I didn’t think about tissue donation at that point, but obviously that’s something as well that came into it.

So you’ve got to go through all these things, whether you want to donate your heart, the lungs, they go through all the organs, through all the tissues, and Rachel had asked that her eyes weren’t used because she thought...

Craig' I think it was because it just said on the donor card doesn’t it? It says on the donor, you know, if you look at a donor card it will say, “Lungs, heart, liver, kidneys, and eyes.” And she says “Take out that bit, they’re not taking my eyes.” It was just, she’d a kind of brown fleck in her eyes.

Sandra' Wee Madeline McCann, you know that kind if thing. And she was dead proud of that.

Craig' Yeah, she had blue eyes but one eye had a brown fleck, just a wee stripe wasn’t it?

Sandra' A ha.

Craig' She says, “I don’t want anybody to touch my eyes.” And I said, “Oh, that’ll, that’ll never happen, so you don’t need to worry about that.”

Sandra' And I think that kind of came from me as well because, as a kind of Catholic upbringing and obviously kind of silly, you’re told the eyes are the gateway to the soul. And said, “You know we’ve always talked about organ donation in front of the kids, and not my eyes, not my eyes.” So I think in a way that kind of came, but I now kind of regret that a bit because I think that’s something that people tend to not do, and I think that’s something...

Craig' It’ll make somebody’s life a lot...

Sandra' and make a huge difference. But under these circumstances obviously, as I say, you’re not thinking straight. You know with all the things, but I do, that’s one of the things I do regret not doing. And I think if Rachel thought about it, she would have done it anyway. But, as I say, I think she kind of followed onto it, she was just listening to what Mum said about that.
 

After a while, the transplant co-ordinator came to see us and she had a long talk with us. That was one of the worst parts of the whole experience because we’d already made the decision to donate the organs. Really I would have preferred to just be able to sign a form saying we have agreed to this, and we understand we could have been told all the details but we don’t wish to know all the details. We just agree to it. 

But, instead of that, we had to sit through her telling us very kindly, very nicely, as compassionate as she could possibly be, but she still had to tell us in detail how and when everything would be done. Which is a hard thing to listen to.

You mentioned that ideally those forms could be much shorter and simpler?

Well, I think there should be two sets of forms. There could be a form that sets out everything and, if you wish, you can go through everything like that. But for us, we had made the decision. We would have been happy to sign a disclaimer to say we understand we are signing this. We have not read the full details of the operations involved because we don’t wish to know those details. We give our consent in trusting that due care and consideration will be taken. Something along those lines.

Obviously, you want your loved one to be treated with respect and everything to be done above board. But you don’t actually need to know how they were going to do everything. I don’t feel that you need to know that. But, with the law as it stands, you have to be told everything. I think there could be two forms. Some people would need or want to know everything, and others like us would prefer just to sign and say, “Yes, okay. We agree to it.” And that would be an end to it.
 

We were lucky, we made that decision, we wasn’t asked. Had Kirstie died on the Tuesday when she had her accident and somebody had come along and said to me, “Will you donate her organs?” I don’t know how I would have reacted, because we had five days to come to terms with what was happening and say our goodbyes and make all our decisions.

But for somebody who walks into a hospital to be told a loved one has passed away and that they’ve got them on a breathing machine or whatever, to have to make a decision like that is something totally different.

We’re all glad that we’ve done it. And sometimes it’s what gets me up in the mornings. If I’m having a bad day, it’s what gets me up in the mornings, knowing that there is something of Kirstie still out there. She gave the gift of life which is, what it is, to five other people and their families. And it is the families as well because they have been involved in hospital visits and all the trauma that goes with it. So it gives them a new lease of life as well. So yeah, she’s out there somewhere and doing good.