Graft-versus-host disease

How do you thank someone for saving your life?

Today is seven months exactly since I received a bagful of stem cells from an anonymous donor. Six million of them, via my Hickman line. I lay on a hospital bed, wiped out from a week of chemo and radiotherapy; I’d just had the most intense treatment that can be given to a human being without killing them.

A nurse hovered around, intermittently checking my blood pressure and heartbeat for signs of a reaction. As the cells flowed through the tube and into my veins, the room was permeated with the unmistakable scent of boiled sweetcorn. (I was warned this would happen. For some reason stem cells smell like sweetcorn).

I thought of the stranger who had willingly given his cells to save my life. Who had undergone various blood tests, an ECG, then four days of growth hormone injections to stimulate his cell production – and the side effects of aching bones. Who had sat for four or five hours with a cannula in his arm while his blood was filtered through a machine. For someone he’s never even met.

All I know about my donor is he’s 24 (a year older than me) and a ‘chunky lad’. In two years’ time, I’ll be allowed to meet him if I want – and if he agrees. Until then, the rules say, I can send him an anonymous thank-you message, as long as I’m well enough.

Up until now, I haven’t been well enough. The last few months have been rough. For a while it looked like the transplant hadn’t worked – I hadn’t ‘engrafted’, my bone marrow wasn’t producing blood cells. I was finally discharged from an isolated hospital room 53 days after the transplant, but with no white blood cells, my immunity was non-existent, so I was virtually house-bound. I couldn’t go to public places. I could only see a handful of close friends and relatives. Every couple of days I had to go to hospital to have blood and platelet transfusions, since my body wasn’t making enough to keep me going. I had to inject myself daily in the thigh with growth hormone factor.

In the end the doctors asked Chunky Lad for a few more cells, and he obliged. I received a top-up in autumn – though by this time my lazy marrow seemed to have woken up anyway, and was beginning to produce cells. Whatever the reason, I could finally escape the transfusion room.

But then there was the Graft versus Host Disease. Tell people you have cancer and you get some well-deserved sympathy. Tell people you’ve got Graft versus Host Disease and you get a blank expression. GVHD occurs when the donor’s cells recognise yours as foreign and launch their assault, usually attacking the liver, the digestive system – or in my case, the skin. For months now I’ve suffered from constant itching and rash. My skin got so dry that the soles of my feet cracked and bled; walking became painful. The surface of my whole body was splintering off like dandruff – I couldn’t move without shedding a flurry of white flakes. No amount of ointments or creams seemed to have an effect, and I was forced to take high doses of steroids, which weakened my muscles, and kept me awake at night.

It’s still a daily struggle, and I have to spend several hours each day applying creams just to keep the itching at bay. But now I’m having specialist photopheresis treatment at a dermatology clinic, where I’m plugged into a machine for a couple of days a fortnight. It’s a pain having a Hickman line, and the treatment will carry on for at least six more months. But the GVHD seems to be slowly improving a little. And now his cells are attacking mine a bit less, I think it’s time I wrote Chunky Lad a thank-you note.

The only question is what to say. To this total stranger whose blood is now flowing through my veins. To this person I’ve never met, who by a complete accident of chance, happened to have the same HLA tissue type as me – closer to me than my own sister, who, like the majority of siblings, was not a match.

With all the complications that arise from a transplant, it’s hard not to feel downcast, at times. Sometimes the future does look bleak. But I remind myself that it’s because of my donor that I can even contemplate a future.

He’s probably saved my life. And there’s no way I can thank him enough.

‘…The unendurable moment struck –

The inward scream, the duty to run mad.’

– Robert Graves, Recalling War

‘”I’ve had such a curious dream!” said Alice, and she told her sister, as well as she could remember them, all these strange Adventures of hers.’

– Lewis Carroll, Alice in Wonderland

They called it shell-shock in the First World War. At first the doctors were puzzled; these were men who were alive – they had survived, left the Front for good, come back as heroes. And still they were paralysed by fear; stammering, unable to speak. Many of them had suffered no injury to the brain, yet they had the kind of symptoms which accompany a wound to the head: dizziness, hearing voices, trembling. Memory loss.

I’ve mentioned the dangers of a transplant. I’ve said how the conditioning treatment – the high-dose chemo and the radiation they give you first, to delete your own stem cells and make way for the donor’s – inflicts a similar kind of devastation to the organs as chemical warfare, as nuclear radiation. Chemotherapy was, incidentally, conceived in the wake of the First World War, when veterans were found to have reduced bone marrows and lymph nodes after exposure to mustard gas.

I went into the transplant with the grim determination of a young conscript. I knew it could kill me. I knew that patients were frequently rushed to intensive care. I knew, as well, that there was no alternative. I signed the consent form.

I managed to develop all the complications I’d heard about, and a few more besides. I contracted a form of pneumonia, which left me feverish, with a violent cough. My liver started failing. My heart rate ran dangerously high, my blood pressure rocketed. Then the Graft-versus-Host-Disease set in; as the donor’s cells recognised my own as foreign, they began to attack – my skin flared up and I suffered a bout of gastro-enteritis.

Worst of all was the mucositis. I had been warned about it beforehand. The mucous membrane, from the oral cavity to the entire digestive system, becomes inflamed; the tongue swells up and develops painful ulcers, the gums bleed.

But nothing could have prepared me for the nightmare which spiralled into each oncoming day, or the ghost train ride which arrived in the evenings, without fail, and shuttled along every night.

At first you notice a slight soreness in your throat, the pills refuse to go down. Then it becomes impossible to eat or drink. A small sip of water is unbearable. Even swallowing your own saliva delivers a jolt of agony. Most patients are fed through a tube in their nose; for some reason, the nurses didn’t manage to fit one through mine, so all my medications, my daily calories and nutrition were transfused through my Hickman line, the rubber tube which had been inserted into a vein under my collar bone.

The pain is like nothing I’ve ever experienced. At night I was lucky if I slept half an hour. I would try to sleep sitting up; my air-ways were so constricted that I struggled to breathe when I lay down, spluttering and coughing. My oxygen levels would drop and the nurses would fit me with a mask.

I used to start retching uncontrollably, nauseated and overwhelmed with hunger pangs. I was starving, I was parched with thirst. But I was unable to ingest anything. For more than two weeks I could not brush my teeth. I could not speak. I could barely move my lips more than a couple of millimetres. I filled three whole notebooks and masses of pages of Word documents on my laptop, as I had to communicate somehow with the doctors and nurses, with my parents.

I read them over now; it’s like seeing the words of another person. Usually I remember everything; details of a conversation I had with a friend years ago. The first time I looked back over the pages of my own handwriting, from just a month earlier, I didn’t recognise them at all. There are the parts that seem plausible enough, that I can imagine having written – the requests for ice cubes to numb the aching, for anti-nausea injections in my stomach, for the nurses to increase my morphine dose – I was connected to an intravenous drip at all hours to reduce the pain, unplugged only for a few minutes each day to have a shower.

Then there is the odd sentence which seems to come, out of nowhere, and I don’t know whether to laugh, or gasp, or how to breathe, because this was a few months ago only, and the words are mine; I know and I can’t, still, place them in my mind’s eye, I can’t see them as anything other than the progeny of a sick joke, some kind of hyperbolic underworld.

‘I’m scared,’ I had written to my dad, at one point. ‘Don’t let them lie to me. Am I getting near the end?’

Tagged Graft-versus-host disease

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