A Matter of Life and Death. Sue Armstrong
It’s a simpler operation to take the whole lot out and put in another lot. The other way means more dissection.
But back to our arrival. Finally, a stretcher comes to collect me, and that was horrendous. I was frightened and sick; I was saying, ‘Goodbye, goodbye’ to the family, and I really thought it was goodbye forever. Danny saw another stretcher being carried in at the same time, and he saw that I had consented to give my heart. Then when I was in intensive care after my operation, he said, ‘Don’t tell anyone, but I think that might be the man who has your heart.’ Later, when we were walking in the ward after we’d both recovered, the man said, ‘You saved my life; I got your heart.’ But he passed away about two or three months later.
After your operation, did they offer to show you your own organs?
No, not at that point. Because we were working together – the Hammersmith and Harefield teams – we had a bleep system to let us know when there were organs to collect from Harefield for our research labs. One day one of my colleagues was asked to collect a specimen of pulmonary hypertension. They all knew that I was waiting for a transplant, so he asked, ‘Is that Julia Polak?’ and they said yes. So he went to collect the organs and then dissect them. Did my colleagues find it difficult working with my organs? Some did, but apparently some not.
But afterwards I did see them, yes. Very interesting: they were lovely in terms of pathology. I presented them at the Hammersmith Hospital. They have a famous thing there called the ‘staff rounds’, where they present three cases: a clinician presents the clinical picture; if it’s a surgery case the surgeon will talk about how he did it; and then a pathologist presents what they found, either in post-mortem if the patient died, or from the surgery. It’s a regular event. This was an anniversary of some sort; I was at home recovering and they said, ‘Can you suggest someone?’ I said, ‘You can present my case, if you like.’
It was a large lecture theatre, for about 1,000 people, but many people couldn’t get in and had to be outside. Some people were crying – it was emotional, you know. [laughs] They sent a note round saying that I was very susceptible to infection, because it was still very early days. I didn’t know about that note, but I thought, ‘Funny, why don’t people come and greet me?’ Now I understand: people were told not to come near. They were all going … [she mimics them all waving from their seats]
My brother came from Argentina with his wife; Daniel was there; friends were there. Everybody was crying. For most people it was the first time they’d seen me since the transplant. It doesn’t happen often, a colleague with a transplant! And, of course, I’m not very big, so I was just standing there looking small. The clinician who’d diagnosed my disease, Professor Oakley, presented; then Sir Magdi presented the operation; then I presented the pathology. My own lungs … Everyone was [she mimics everyone gasping]! The case was published in the BMJ [British Medical Journal] as ‘The pathologist as patient’.
Did you yourself feel emotional at the time?
Well, no; I was trying to remain strong, because I was still quite wobbly, and I was busy trying to concentrate on what I had to present. And I felt strange that people were waving at me and they were all crying. [we laugh]
It is an amazing story.
At these staff rounds the pathologist has to conclude. Apparently I said, ‘This pair of disgusting lungs …’ It was an extreme case of pulmonary hypertension, probably the worst I have seen, and I couldn’t imagine how I had managed to breathe through those lungs.
What relationship did you have with the material when you were presenting it as a case?
It was just slides. A fascinating case, but just slides. [we both laugh]
But people offered you all kinds of counselling support after the operation?
Well, they always do after a transplant, but I didn’t take it. I did have nightmares for a while: I’d get up in the night saying I couldn’t breathe. Of course, I could breathe, and in the end obviously I worked it out for myself.
You now have the reputation for being one of the longest-surviving recipients of a heart-lung transplant. What are the big risks?
You can die during the operation, because at certain points you are not alive: they take out your heart and lungs and put you in an artificial heart and lung machine. You can die when they put the organs back if they don’t ‘take’: you need to get the organs pumping, the new heart that has just been connected up to your own blood vessels. And then you can die – which I nearly did – when they put you in this artificial heart and lung machine because all your blood clotting is altered. I was bleeding like mad, and Sir Magdi said, ‘She needs fresh blood.’ ‘Fresh blood’ means not from the blood bank, so they had to bring in the soldiers from the barracks near to Harefield. They didn’t have time to test for HIV or anything else. I was dying. They tested for matching, and that’s all. But my lungs, the tissue, didn’t match. Sir Magdi explained the situation to Danny, but at a certain point you have to decide: do we match, or do we take the chance? You might find the perfect match if you wait, but it might be too late.
What do you have to do now to stay healthy?
I have to take drugs to suppress the immune system, to prevent rejection of my new organs. They aren’t difficult to take, except that I have to take loads in the morning and loads in the evening. But the consequences of taking these drugs are not nice. You can develop malignant tumours. You can develop very serious infections because your immune system is suppressed. And some people die from what is called chronic rejection. Tomorrow is my ‘annual’ check-up actually, my MOT.
And do you get frissons of fear before your check-up?
Oh yeah, I’m completely neurotic. Every time I do the lung function test I hate it. My lung function is declining, and it’s difficult to tell if it’s age or just the lungs. But this is uncharted territory and you just hope … Nobody knows.
But how do you feel in yourself?
I feel fine. I do gym every day; I do yoga once a week, which I hate; it’s so painful! I work all the time; I never stop. But you don’t know what’s next, and nobody can tell you, because they don’t know either.
So do you feel vulnerable because your immune system is suppressed?
Oh yes, very vulnerable. It’s not a good idea to go in aeroplanes because of the germs circulating in the air. I do fly, but we go first class, which has a bit more distance between people. Washing hands is very important, too. And I make sure that when people come to see me they are not unwell.
So tell me, what impact has your experience with this disease had on your career and on your life?
It has completely changed both.
When I got back to work after the operation, I thought I had to do something related to what happened to me, and I wanted to do more study on pulmonary hypertension. But then this new field started: tissue engineering and regenerative medicine, or stem cell research, creating lungs to overcome the lack of donor organs, etc. You could say that I would have gone into that field anyway, because I always liked to be into the exciting new areas. But it looks more glamorous to say it was as a result of my transplant. It’s like the plot of a good novel …
So you left your original field?
I changed fields completely. Well, the purpose is the same – it’s all geared to saving human lives. And the technology is the same, but the projects are different.
So you were a pioneer in the tissue engineering field. How would you describe your work to someone who isn’t a medic?
Well, we all have the capacity to regenerate, otherwise you would cut yourself and you’d die by bleeding, but you do heal. If a baby has a cut it will not easily leave