A Matter of Life and Death. Sue Armstrong
the existence of a hormone system in the gut and was on the team that discovered how nitric oxide – a substance produced by exhaust fumes and the magic molecule in Viagra – is made in cells throughout our bodies and governs a wealth of vital biological processes. In 1995 she was doing research into a rare lung condition, when she herself collapsed with the disease and had to have a heart-lung transplant to save her life. Later she presented her own case at a medical meeting at Hammersmith Hospital, and says of her lungs, ‘They were lovely in terms of pathology … [But] it was an extreme case of pulmonary hypertension, and I couldn’t imagine how I had managed to breathe!’
Dame Julia is one of the longest survivors of a heart-lung transplant in the UK, and the experience changed her life course. She switched to the newly emerging science of tissue engineering and regenerative medicine, which aims to find new ways of repairing damaged organs using patients’ own stem cells, and will eventually replace the need for donor transplants.
Dame Julia grew up in Argentina, to where her Jewish grandparents had emigrated from Eastern Europe to escape persecution. She and her husband Daniel Catovsky, a haematologist, came to the UK in 1967 for a year’s postgraduate study and never went back. The science in Britain was exciting and back home their own families were being persecuted by the military junta.
What was your first experience of seeing a dead body?
It was more or less when I started pathology. As a student I had to clean the pieces for the museum, and there were bits in formalin that I had to take out and in. I remember I had to come in very early one morning to the post-mortem room – it was a very cold morning, and when I reached into the bucket a hand clasped my hand. [laughs]
And how did you react?
With disgust! I ran out of the room.
But you psyched yourself up and went back in?
It wasn’t really a crisis. I’m not that kind of person. I remember after my transplant, people said: ‘You’ll need psychotherapy, some support.’ But I’m not the reflective sort.
When you chose pathology, was it the disease mechanisms that most fascinated you or were you focused on the patient and the patient’s family?
The why of diseases is what interested me. I was interested more in understanding the mechanisms of disease and the science than curing patients. I mean, to such a degree that when they took my diseased lungs for research purposes at the Hammersmith, people asked, ‘How could you look at your diseased lungs?’ But you don’t think ‘That was part of me,’ you look at the science behind it.
So tell me about your operation. How did you come to realise you needed a transplant?
It’s a long story … I’d probably had the disease all my life, but nobody realised. I was becoming more and more breathless and people said, ‘It’s asthma.’ But I had a very rare disease called pulmonary hypertension – high blood pressure in the lungs – where the incidence is one in a million. It was only diagnosed when I collapsed at the Hammersmith. I was in heart failure and it was terminal. But until then, no one had considered it.
How long had you been experiencing breathlessness?
All my life. I had probably had pulmonary hypertension all the time, although it was probably a very mild form until it suddenly deteriorated. I had my three children, and I was flying everywhere, giving lectures all over the world … But it wasn’t comfortable, and at the end I couldn’t even walk.
And did you ever suspect that’s what it might be?
I didn’t suspect pulmonary hypertension. I thought it was something more than asthma, but I couldn’t tell.
But you’d been studying pulmonary hypertension, hadn’t you? Why did it not occur to you?
I suppose I thought, ‘It doesn’t happen to me.’ It could be denial; I can’t tell. I’m not a very good psychologist.
So what exactly happened?
Well, I collapsed. That was in April 1995, and my transplant was on 17 July. I was 56 years old. When they got me to hospital they were shocked, obviously, because they went out of my room to talk, and I suppose they were discussing how to break the news. I couldn’t understand why they’d gone outside. And then when they said, ‘You have pulmonary hypertension,’ I demanded: ‘But why?’ I was so angry I wanted to hit someone! They said, ‘We don’t know why. But we have to move you to the ward.’ I said, ‘No, no, I’m going home. Get my clothes.’ They said, ‘No, you’re staying.’ And then they called my husband Danny. He was shocked and didn’t understand at first. And then they told him, ‘She’s seriously ill.’ They put me on a drip and oxygen and all that. Then an expert from the Hammersmith, Celia Oakley, made a diagnosis. That was April, early May. They started treating me with something, but it didn’t do any good; I was terminal, so I was deteriorating fast.
Were you in hospital all the time?
I was in hospital only for two weeks at first. They sent me home, but I collapsed there again so I went back, and then at a certain point Sir Magdi Yacoub, the famous transplant surgeon, appeared. I was carrying out research projects with him at the time, and I said, ‘Why are you here?’ He said, ‘It’s a social visit.’ [laughs]
So they were keeping you in the dark?
Actually, they were in the dark themselves; they just couldn’t believe what they were seeing.
And they thought you weren’t going to survive?
No. But when they put the possibility of a transplant to us, we didn’t want to accept it. Remember, this was 13 years ago; it’s not the same as today. They didn’t do so well in the early days, heart and lung transplants. I was in the bed, Danny was by my bedside, and one of my colleagues at the Hammersmith walked in. He had nothing to do with my case, but he knew we were resisting making a decision, and he said, in front of me, ‘Look, she’s dying. Okay, she may die during the transplant or soon after. But it’s the only chance she has.’ It was shock therapy, and at that moment we accepted. We didn’t have any choice.
And how did you feel, being given a death sentence like that? You say you’re not a reflective person, but how did you take the news?
Actually, I was too ill to react. I was too busy trying to get better and I couldn’t think very well. They said, ‘You have to wait for a suitable donor organ,’ and then nobody contacted me again. The waiting was very, very hard. I was also wasting away, because I couldn’t eat. It was horrendous. Then they told me, ‘If you fit oxygen in your house …’ (which was a job because it was a house on several floors) ‘… you can go home on a Saturday and come back Monday. You can go for a little rest.’ So I went. It was a big palaver with the oxygen machines, and they had to get me up the stairs with a wheelchair and all the oxygen … That was Saturday. Then on Monday, two o’clock in the morning, the telephone rang. Everybody was so fast asleep that no one else heard it, and I had to drag myself over to the phone. I picked it up and someone said, ‘You have to come immediately to Harefield – we have some organs.’
I had left all my things at the Hammersmith. Everything was there, because I’d been in the hospital for months – all the cards and the flowers and the books, my nightie, shoes, make-up – everything was at the Hammersmith, but I never went back. I went to Harefield.
I’d worked with Sir Magdi at Harefield every week, so I knew the way. But Danny was driving, and he didn’t have a clue. It was the middle of the night; my son Sebastian was in the car too, and they were both terrified. I was saying, ‘Turn right, turn left, go straight.’ We must have arrived at about three or four in the morning. They asked me for authorisation to donate my heart, and apparently I signed very happily. But I don’t remember any of this.
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