Diana - Interview 03
More about me...
Diana had a congenital heart condition from birth, which was diagnosed when she was five-years-old. She later developed pulmonary hypertension, which caused her to have lung problems that became more severe over time. Through her 30s, Diana was often breathless, especially when she exercised. Her health gradually deteriorated and, by her 40s, she was unable to walk very far or climb stairs without feeling breathless and tired. When she found it more and more difficult to breathe, she took medical retirement from work.
Diana said she had never been interested in having a transplant because she disliked hospitals and medical intervention. From her 40s onwards, though, she began realising that a transplant might be an option that she would need to consider.
At the end of 2000, when Diana had reached the point she could hardly breathe, she was admitted to hospital for three weeks, where she was also assessed for a transplant. She realised at this point that, without a transplant, she could die. Diana’s main concern was the amount of medications she would need to take post-transplant. She had always reacted badly to medicines, including antibiotics and general anaesthetics.
Back at home, Diana had an oxygen concentrator fitted and various other aids to help her in her daily life. Eventually she became so weak that she and her husband needed to make a decision about transplant. They gave themselves six months to think about this major decision, and Diana talked to health professionals and former transplant patients. This was a very uncertain time and Diana said that, when she saw the 9/11 terrorist disaster live on television, she finally made up her mind to join the transplant waiting list.
Waiting for a transplant was another uncertain time. Diana knew the call for surgery could come at any time and, even then, be a false alarm and she could be sent back home without surgery. Diana said she felt ‘numb’ during this time. She had one false alarm and felt disappointed afterwards, which showed her that she was ready for the transplant.
On 8th June, Diana received a call from the hospital informing her that organs were available for her transplant. She said she didn’t feel anxious but, rather, ‘disassociated’ and concerned about preparing for her hospital stay.
After surgery, Diana came round in intensive care and, about five days later, was transferred to a general ward where she stayed for a further two weeks. She said she felt extremely sick and that it took about four months for the sickness to be controlled. At this point, Diana felt that having a transplant had been the wrong decision. She felt angry and scared. She also felt a sense of grief for the heart and lungs she had lost.
After two weeks on the ward, Diana spent three days in a flat near the hospital. Back home, however, she was very sick and was re-admitted to hospital, where she spent another week. Her medication was halved and she was discharged. At home, Diana was very sick and, again, re-admitted to hospital for a further week. Emotionally, she felt depressed and suicidal. She found it difficult to sleep and was hardly eating. She felt shocked and grieved her old life. Diana said that, only after four months or so, did she start feeling better physically and emotionally, gradually becoming stronger and fitter.
About six months after her transplant, shortly after her depression, Diana said she felt ‘euphoric’. She began to realise that she now had more energy than she’d experienced in a very long time and ‘wanted to do everything’. Over eight years on, Diana said she felt very well. Throughout this time, she has had two infections and recovered well on both occasions.
A year after Diana’s transplant, she started working again and, for the last six years, has worked part-time in the NHS as a counselling psychologist. Since her transplant, she has also travelled widely and spent quality time with her husband and family.
Diana was told very little about her donor. Two weeks after her transplant, she was told that the organs she’d received had come from a 31-year-old woman who had, sadly, died from a brain haemorrhage. One year after the transplant, Diana wrote to her donor family. She said she always thought about them and her donor. Five years after the transplant she wrote to them again, though has never had a reply. She plans to write to them again and said she would like to know more about her donor, to whom she is extremely grateful, as well as to her donor’s family.
Diana said she found the support from her husband invaluable, as well as meditation. She exercises a lot and does her best to look after herself. Since her transplant, she has also written a book about her experience, called Will I still be me? A journey through a transplant (published by Day Books).
Diana became increasingly breathless and her health deteriorated even more in her thirties. By 40...
I had problems really from birth because I was born with a congenital heart condition. And it wasn’t picked up until I was five because I was born in the fifties and there was no cardiac tests other than very basic ones.
So brought up with the sense that there was something wrong with my heart but not sure exactly what it was. Diagnosed properly at five and told that I was likely to have a very poor prognosis. But in fact I did much better. But I developed, over my life I developed pulmonary hypertension, which caused problems in my lungs.
And one of the main problems I was living with was getting very cyanosed, blue on exercise and breathlessness. So for all my life I’ve been very, very breathless. But I was, I think I was quite lucky in the sense I had a reasonably normal childhood and a reasonably normal adulthood up until about the age of 35. But I’d always had the sense of my life not being very long, and I kind of peaked in my, I’d say end of my twenties. My health peaked. And then started really deteriorating from early thirties.
And at that stage I knew time, the tock was clicking, no the clock was ticking [laughs] at that point, so I knew that my time was getting more limited. And through my thirties I started having quite major arrhythmias and I was much more blue and breathless on exercise. And by the time I reached forty, I couldn’t walk very far. I needed a, I had a disabled parking disc at that point. I couldn’t manage stairs very well. I couldn’t walk any great distance.
And then when I was about, I suppose early forties, everything started falling to bits because I had a virus, a dose of flu, and at that point the pulmonary hypertension got a lot worse and I could hardly breathe most of the time. I’d get very breathless just making a cup of tea or trying to do anything. And at that point I took medical retirement from work. And I was then told, well I think the possibility of a transplant had been around for a very long time.
Diana was told she could get the call at any time. She had a bag already packed. She knew the...
Did they actually say how long you would have to wait or that…?
No. They said that it could be, you could get a call half an hour after you’ve gone on the list or you could wait for a year, two years. We really don’t know.
So have your bag ready?
Have your bag packed ready to go. And I talked to other people and some people had waited three months, some people had waited two years. And I talked to someone who’d been on the waiting list for eight years as well, and still hadn’t come up with the transplant. I’ve talked to people who’d been too unwell. The call had come but they had been too unwell. And people had lots of false alarms as well, so I knew that it was very uncertain what would happen next. And I knew I might die before I got the call for the transplant.
Diana felt disorientated at first. She had lots of drains and tubes. Several days later, she felt...
The next thing I knew it was Tuesday morning. I woke up and I said, “When are you going to do the transplant or have you done it?” or something. And they said, “It’s all done.” And I’ve got some very odd memories of being in intensive care, just sort of disassociated memories. I remember talking Greek to some of the nurses because I’d been learning Greek. They said I was speaking Greek quite well, under a haze of morphine. And I remember having a bath… someone washing me. And I can remember telling one of the doctors what an arrogant little sod he was, obviously my true personality coming out, times of stress.
And then the next thing I knew it was Tuesday morning and they were waking me up and saying do I want any breakfast. I felt absolutely dreadful. And I felt, “Awgh,” poisoned and horrible and I had big tubes coming out of my, drain, chest drains in, enormous tubes coming out of my chest and wires coming out of my neck, and wires coming out of both arms. And they said, “Right, stand up.” And other things like that. So I had to stand up.
In intensive care?
Yes. It was just the end of intensive care. And I had to stand up and walk over and sit in the chair. Then I had to get into a wheelchair. And it was all a big palaver, and I was feeling dreadful.
Diana had vomiting for four months until finally it was controlled with medication. She felt that...
One of the really, I think unacceptable things that happened to me was the nursing staff’s attitude towards me. Because when I first came into the ward, one of the nurses, I was feeling very sick and I said, “I’m going to be sick, have you got anything that will help? What can I do?” Thinking that these nurses must be used to post-operative nausea, vomiting. They’ll tell me what to do. And this nurse said to me, “Oh, it’s just mind over matter.” I had just vomited down the front, and I said, “I think it's matter actually.” I said, “No mind in it whatsoever.”
I think, I don’t know. Eventually it was controlled, but it took four months for them to get a good control over the sickness.
Various things were tried. It was intermittent. I was sick and then okay and then I had the sickness and then I was okay. I think looking back there was a lot more they could have done. There’s a lot more I could have done. I think, because the combination of the drugs and the anxiety, was dreadful. I think if I’d went through that again I think vast doses of anti, Anxiolytics and something to calm me down as well as all the other medication would have been a good idea. But, I don’t know, it wasn’t very well managed that.
Four months after her transplant, Diana felt suicidal and wondered if she could keep taking all...
I think the kind of emotionally processing, what I’ve been through, it partly hit me shortly afterwards. I think I felt the four months between the transplant and the point at which I was recovered after the, no, the four months after the transplant, that was my worst emotionally, and I went through very bad anxiety. But my mood went crashing down. Because I remember now I got very, very low at one point, when I was being very sick, I didn’t think I could do it.
I didn’t think I could keep going on the medication. I thought I was going to have to stop. And I felt quite suicidal at that point. I was on high levels of steroids, which I was told caused mood swings. But I actually was suffering from clinical depression. I was suicidal. I couldn’t sleep. I stopped eating and I just felt absolutely dreadful. I don’t know how long it was for, and my husband was trying to support me during that time.
On looking back and as a psychologist, I think I should have, they should have really taken it seriously and either given me anti-depressants or psychological help of some sort. But it was kind of the shock of it all. And I was kind of grieving my old life and having to adjust to this new life, with this new role and not being disabled any more. And being well and who was I? And having someone else’s organs inside me. All those things, that was very, very hard.
Diana thought about her donor and donor family a lot. She wrote to the family a year after the...
I asked about my donor immediately after the operation. I wasn’t told very much. But then I asked a couple of weeks later just before I went home. And I was told she was a 31 year old woman who died of a brain haemorrhage. And I never quite knew what to do with this information for quite a long time. I thought about her a lot. And I remember when I was going through a very difficult time after the operation and feeling so low, I got a real sense, I felt quite guilty because she’d died and I was alive. It was like it was the wrong way round.
But I couldn’t, I had to do well, I felt a real duty, I had to do well for her family. I had to keep going for her family. And I thought about them a lot. I wondered who they were and what they were going through. And wondered whether she had children or whether she, well who she was really. I was very curious to know.
And I regularly, if I went anywhere near, I’m not particularly religious, but if I went anywhere near a church, I’d always light a candle for her. I was always thinking about her, and thinking about the family. And thinking well it’s six months for me, and what are they thinking about, and how are they doing. And then it’s a year for me, and when a year came I wrote to the family and said thank you.
And I said I’m doing really well, and this is what I’m doing, and it’s amazing. I want to look after my new heart and lungs and do my best and just, oh, I was incredibly grateful for them for what they’d done.
And then I wrote again at five years as well. I didn’t get a reply from them. I’m going to write again because I’m going to specifically ask if they feel able to give me more information at this stage. I’ve got a little bit more information, but all I know is that she did have a brother and sister, who were there at the time of her death as well. I’d like a bit more. I’d like to know who she was and what she was like, and what she did for a living. And whether she had children or not.
I’d just like to make contact with the family if possible. But I quite respect if they don’t want to because it’s a very painful thing. But I do think about them a lot, and I think about her a lot, with a real sense of gratitude.
Dianas husband looked after her throughout her illness. When she got better, though, he became...
I think my husband was very much a carer for me, and he was wonderful. He couldn’t, you know, he did all the right, absolutely the right things, and he looked after me coming up to the transplant. Did all the practical stuff, looked after me emotionally. Was always there for me, coping, coping, coping. And it had a terrible toll on him. And he knows that when things are difficult, he goes to a kind of coping mode. He shuts down emotionally and gets on with it and looks after the other person without really focussing on his own needs, which helped us right the way through it.
So when I got better, his mood went crashing down and he got very depressed. So it was kind of his turn to really look at what he’d been through and talk about it.
And I encouraged him to see a counsellor or someone at that point. He didn’t in fact because we talked about it quite a lot, and I think he talked to friends and things. But it was a very isolated time for him because everyone was concentrating on looking after me and he got rather neglected.
And I think families could do a lot more to look after the caring partner, or friends certainly can. So I got a lot of the attention. Some friends of mine, did their best to look after him as well. But I think it hit him afterwards. And the other thing that went on with us, and I think probably goes on with a lot of people, is we had to switch roles because he’d been my carer, so he had to stop being my carer.
I wanted to look after him when he was depressed, but he found that very, very difficult because it wasn’t the right way round. And who was he? If he wasn’t my carer, and what was our relationship all about? So we had to go through quite a hard time I think re-negotiating all of that. That was quite tough for both of us.
And is there anything you would advise anybody who’s been through a transplant and is experiencing this too? Both partners?
Well talk about it if you can, or talk to other people about it. And I’d say to anyone involved with a relative or friend who’s going through the transplant, don’t forget about the partner. Don’t forget about the husband or wife or partner in the background. Because they need it just as much in a way, to talk about what’s going on.
Diana has been working for over six years as an NHS psychologist. She has also been to New...
I went back to work after about I suppose a year, after a year I started doing a bit of work. And then two years I got a job again in the health service as a psychologist, and have been working since then. So working for the last six years. I work part time. And partly that’s because I’m not completely normally fit for my age. I do get more tired and I think that’s probably the medication, my age, and what I’ve been through. But I also want to leave time to do other stuff. So I’m very conscious of priorities.
And we’ve been to New Zealand twice, which was one thing I really wanted to do. And we’ve done lots of lovely holidays. And I’ve spent lots of time with my husband and with our family.