When I emailed Rachel Johnson, hectically busy writer, journalist, mum and wife about her husband Ivo, I did not expect to get a reply. Much to my surprise and delight she replied giving permission to share her family’s experience of a transplant. Rachel’s husband Ivo Dawnay was diagnosed with Hepatitis C and cirrhosis of the liver at Addenbrooke’s in Cambridge back in 1995 when he was 42 years old. Ivo received his life saving liver transplant in February 2005. Rachel shares her thoughts in the article below which first appeared in the Evening Standard in May 2005. The family you see together owes so much to their donor.

Here is what Rachel has to say about the demands that a transplant operation places not just on the patient but the family as a whole.

My mobile rang. I checked the caller ID and sighed, as I was pleasurably quizzing a girlfriend about important matters, such as whether I should move my eight-year-old to Notting Hill Prep, and was the wet fish was better at Fresh and Wild or Kensington Place.

“Where are you?” My husband always asks me this, when I’m not in the house, as if I’m deserting my post. “I’m about to have lunch with Tania,” I admitted (I usually pretend that I’m too busy for lunch, but cannot resist the fried green tomatoes, loaded with mozzarella, at 202 Westbourne Grove.) “Why don’t you join us?” I suggested.

“I want you to come home,” he said, in a strange voice. “Come and have lunch with me.”

Something told me for once to do his bidding. I’ve never been one for the “obey” part of the marriage vows, but I do think that when you sign on the dotted line, it’s for richer and for poorer, for better or for worse and in sickness and in health. Especially in my house.

When my eldest son was a toddler, he started having terrifyingly long fits, which could only be halted by aggressive intervention in hospital. He was diagnosed epileptic aged almost three, and was on anti-convulsant medication for seven years.

During this time, my husband was found to have hepatitis C, and cirrhosis of the liver, and spent years on a debilitating cocktail of drugs which made him feel terrible and murderous but still failed to zap the virus. He also had regular three-monthly ultrasounds to make sure that the liver was not growing tumours as a result of both the scarring and the virus. If the liver did sprout lesions, it was vital that any malignancies were spotted early by his radiologist, and even more vital that he was supplied with a new liver as soon as possible.

Ivo had been to St Mary’s to see Dr Crofton that morning. But this was such a routine thing for us, over the past eight years since his diagnosis, that it had slipped my mind.

The Transplant call

When I walked through the front door, he beckoned me through the hall and we stood in our sitting room, with my mother’s paintings on the walls, our special family things all around us. The leaves on the almond tree in the garden behind our Notting Hill house, where we had lived together for 12 years and had our three babies, were an autumnal blaze of red and gold. Then he took me in his arms, and whispered in my ear.

I sank down into a chair, and cried. After a while I went down into the kitchen, called my mother, during which I cried some more, and then I washed my face, and walked up to Pembridge Square to pick up my daughter, 10, from school. I may have stopped to buy her a vanilla muffin with green icing and sprinkles from the Hummingbird Bakery on the way home (a rare treat) but otherwise, it was business as usual.

Well, not quite as usual. Everything was just the same, but my husband now had liver cancer, which changed everything.

For a while, it was all go. He went up to Addenbrookes hospital in Cambridge (the place where Sir Roy Calne did the first transplant) for a week, and after hanging agonisingly in the balance, squeaked onto the transplant list. He was told he could never be more than two hours distant from Cambridge, and that he must be reachable by telephone at all times. He was told to have his bag packed as the operation would probably take place within days.

I rushed out to Muji to buy slippers, a soap dish, some Perspex frames to stick pictures of the children into, that sort of thing, and packed a bag for him. Not surprisingly, every time the phone rang, we both jumped.

I rushed out to Muji to buy slippers, a soap dish, some Perspex frames to stick pictures of the children into, that sort of thing, and packed a bag for him. Not surprisingly, every time the phone rang, we both jumped.

During all this, I knew my place, I think. Ivo had the starring role, he was the one with cancer. He was the one who had night sweats that by the time the call from Addenbrookes came, saying a liver had come up, his cancer would be too far advanced for the operation to be performed. He was the one who underwent, on February 11, a 14 hour operation, and who woke up, alone, in intensive care with tubes coming out of his head. He was the one who had the anxiety that his old body would reject his new liver, that recovery would be slow and arduous, the one who faced a lifetime of immuno-suppression treatments.

But through all this I shared his sleepless nights, and I faced desperate anxieties of my own, which were all about life with him, life with serious illness, and life without him. I looked at the prospect of widowhood and single motherhood squarely in the chops, and it was not a pretty sight. I also decided that, to protect the children from playground chatter, I would continue to write my weekly column for the Telegraph, the Mummy Diaries, as if nothing was wrong. This was strangely easy, as in my view writing a personal column is not about what you put in, it’s what you leave out.

Ivo's Battle

And while Ivo was fighting his own Battle of Britain, my position as squadron leader on the Home Front, and chief purveyor of spirit of the Blitz, became ever more unassailable. Before the operation, it was possible to pretend that there were two functioning adults in the marriage. Then the call came, out of the blue, that a donor liver was available. It was at 8pm one night, when I was alone with the children and he was in St Mary’s Paddington recovering from laser surgery (a sort of housekeeping exercise designed to keep him on the transplant list). He was whisked up to Cambridge by ambulance, and I knew he would be operated on the next day, February 11, at 7am.

I think the bleakest, and yet most symbolic moment came during the surgery itself. It happened to be the day of my daughter’s Special Assembly at school, four hours into the op, and also the day my other two had to be picked up from Sussex and Hampstead for half term – ie a great day for me, logistically.

As I watched Milly do what she called her “Beyonce” dance, little girls disguised as strawberries and green beans (it was a healthy-eating themed production) cavorted on the stage around her. “So how are you?” asked another mother, during a break in proceedings. I knew her a little, but not well enough to share my crisis with her.

For a second, I was lost for words. “Oh, fine,” I replied.

That morning, at a quarter to seven, I had rung my 84-year-old mother in law to tell her that her son was about to go into theatre. I had heard, in her voice, the unchanging terrors that parenthood holds for mothers of any age. My husband was over 50, and she in her ninth decade, but I could tell that to her all that mattered was that her baby boy was in danger.

So, for obvious reasons of bathos, I simply couldn’t think how to begin to explain to this other mother that at that moment, my husband was in theatre, undergoing life-threatening surgery to save him liver cancer, while our daughters shook their booties on the podium in front of us. I didn’t even know, at that point, whether my husband was alive or dead. But I knew that if I spoke of this, she would think I was mad to be there at all. But I had to be. It was all I could do. Even in the heat of the battle, the birds keep singing, and even as my husband walked in the valley of the shadow of death, I had to watch my daughter’s little dance to the accompaniment of Crazy in Love by Beyonce Knowles.

After such a major trauma, in the old days, Ivo would have gone to a nice convalescent home, to have round-the-clock nursing and his supper on a tray. Instead, Addenbrookes discharged him after ten days without telling me, and he came home to London on the train on his own, with a bag draining fluid from his stomach cavity strapped to his waist. (Actually, I still can’t bear to think about that, as I cannot bear to remember how he looked, with 17 tubes coming out of different bits of him, in the High Dependency Unit the day after his operation.)

And from the moment he was home, I suppose, I knew that for the duration I was part of the newly identified group of “lone married parents.” I had three children, an invalid husband, a dog, and a career all to look after – all by myself, as Celine Dion would say.

I don’t want to sound self-pitying, and I would hate anyone to think this an opportunity for a whinge. But these facts were inescapable, and far from rising to the occasion like an all-achieving, multi-tasking Supermummy, I found the whole deal pretty raw on occasion. Not that my husband was demanding – he knows better than that - it was more that everything that had to be done (cars, houses, schools, admin, driving, catering, tucking up, kissing better, etc) always fell to me.

And life goes on

Meanwhile, of course, the level of interest in our health crisis had tailed off. That was something of a relief on one level, because I found telling the same story over and over again to callers draining, even if the concern of the “disaster tourists” was, on one level, reassuring. I began to realise that Ivo’s liver transplant was rather like the Boxing Day tsunami. One day, or for several days, we were top of the news agenda. Then, gradually, we slipped down.

I also remember feeling that waiting for the operation to happen (and remember, we had no idea when it was going to be) was like waiting for a baby to be born without anyone knowing the due date. People would ring up asking if Ivo “had a new liver” yet, and it was difficult for both of us not to hiss with irritation when they did.

Now our story is three months old, of course, we are off the agenda entirely. My column continues as if we are a breezy, normal family, with its anecdotes about au pairs and puppies. And my husband, I am happy to report, seems to get stronger every day. His new liver, by the way, is exactly half my age, and bedding down nicely.

But I also feel that from February 11th, 2005, from that day forth, I was locked into the role of young, fit, intact partner in the marriage, while he could hog the role of invalid - with carte blanche to be grumpy, tired, ill, and off-duty whenever he needed to be, until death us do part. And I can’t deny, on a bad day, I sometimes envy him this. But I know that I’m being churlish. I am lucky to have him, and I do hope my mother’s consoling words (which somehow always makes me laugh) that the “creaking gate lasts longest,” turns out to be true in the end.

You can find out more about Rachel Johnson on her website which can be reached on the following link: [Rachel Johnson web link] In 1989 Rachel joined the staff of the Financial Times, becoming the first female graduate trainee at the paper. She moved to the BBC in 1994, and turned freelance in 1996. She has written weekly columns for the Sunday Telegraph, the The Daily Telegraph, the Evening Standard and other regular columns for Easy Living magazine, She Magazine, and the Financial Times. She is a contributing editor of The Spectator and contributes a weekly column to The Sunday Times and the Evening Standard and other publications. She regularly appears on radio and TV. Her works include the bestselling "Notting Hell" (Penguin 2006), a novel about couples living in the Notting Hill area of London, "Shire Hell" (a follow up to Notting Hell), and "The Mummy Diaries" (Penguin 2004), a diary of her London-Exmoor year. She edited "The Oxford Myth" (Weidenfeld and Nicolson, 1988) while still an undergraduate at Oxford. Ivo Dawnay is Director of Commuications with the National Trust. You can read his portrayal of liver transplants in a fascinating article he did for the Daily Mail in November 2008. The following web link will take you there: [The Daily Mail web link] Not that I want to come between a woman and her man but Rachel and Ivo strongly disagree on the possible introduction of presumed consent. Ivo remains committed to the voluntary opt-in system whereas Rachel believes that the opt-out sytem would lead to more transplants. What is your view? Go to the Opt-in; Opt-out debate on this website using the following link: ['Opt-out or Opt-in?' web page] More information about liver transplants can be found at the following NHS Choices web page: [NHS Choices web link] and the British Liver Trust website: [The British Liver Trust web link]

TRANSPLANTS SAVE LIVES, MONEY and MISERY.