Terry’s Transplant Story

Terry first got ill a few years before we started seeing each other. He’d been on holiday with friends, and, on the flight home, his legs swelled up to alarming proportions, and refused to return to normal. So that wasn’t good.

A trip to the doctor led to a two-week stay in hospital, during which he was diagnosed with a rare kidney disease which, unfortunately, there was no cure for. It might get worse, said the doctors, but then again, it might not. If it DID get worse, it might take twenty years for it to happen, or it might happen tomorrow. It could also just get better: there was no way of knowing. So they prescribed him some drugs to take down the swelling, and sent him home, instructing him to come back in six months for a checkup.

A trip to the doctor led to a two-week stay in hospital, during which he was diagnosed with a rare kidney disease which, unfortunately, there was no cure for.

The six-monthly checkups turned to yearly ones, and finally stopped altogether. Terry’s condition didn’t get any better, but it didn’t get any worse either and as it was being controlled by the medication he was on, by the time I arrived on the scene, it had become just One of Those Things, a part of life that you don’t even think about all that much.

Such was the extent of this Not Thinking, that when Terry started to get ill again, the year we bought our house, we didn’t instantly make the connection between the New Illness and the old one. It started on Boxing Day of that year (Boxing Day has never been good to us, as you’ll discover), when Terry was struck down with a really bad bout of food poisoning. He was staying at my parents’ house at the time, and was ill enough that even my dad, who normally worries about NOTHING (Seriously, you could tell my dad a nuclear bomb was headed towards him, and he’d probably just wonder aloud if he had time for a quick cup of coffee before it got there) was starting to become concerned. A quick call to Terry’s family, however, who he’d eaten dinner with the day before, confirmed that they were all suffering similarly: the obvious conclusion was that it must have been something they’d eaten.

The problem was, though, that Terry didn’t ever really seem to shake off that bug. Sure, he’d be OK for weeks at a time, but every so often he’d be violently sick, for no reason we could think of. He went to see his doctor, of course, who seemed completely unconcerned. “Acid reflux,” he said. “Take antacid, avoid greasy food and elevate the head of your bed.” Terry did all of these things, but nothing seemed to work. In that first year of living together I grew used to him getting into bed and then, a few minutes later, throwing the covers off himself and rushing to the bathroom to be sick. (It was hard not to take it personally, to be honest. I mean, I know I look different without my makeup, but for someone to actually throw up at the sight of me?)

I worried obsessively about all of this. I think he did too, although he would never have admitted it. Still, though, we failed to make any connection between his existing kidney condition and this new acid-reflux. After all, the doctors didn’t seem worried, so why should we?

That December, we went to Las Vegas and got engaged. I don’t think Terry got more than a few hour’s sleep that whole week. The reflux was, by that point, the worst it had ever been. He couldn’t lie down AT ALL without feeling sick – I could actually HEAR the acid gurgling in the base of his neck – so he tried to sleep sitting up, and couldn’t. By the end of the week, he was walking around looking like a ghost: it was obvious that there was something very wrong.

At the airport on the way home, I bought some trashy magazine, the name of which I can’t even recall. One of the articles was a “real life” story about a girl who’d gotten engaged, only to lose her fiance to cancer a few weeks later. The headline was something like, “The best day of my life was immediately followed by the worst!” It was real cheery stuff, I’m telling you. (It was one of those magazines that’s full of stories like that. “Ten Places You Didn’t Realise You Could Get Cancer!” “I Almost Died of a Brain Tumour: So Could You!” “Aliens Captured My Cat!” You get the picture.) I couldn’t get that story out of my head, though. This is what would happen to us, I thought. There was no way Fate would let me be happy and enjoy my engagement. I would be just like the girl in that magazine, and the proof was sitting right there beside me, looking like Banquo’s ghost. In a way, I almost felt like preparing myself for the worst was a way of circumventing it. I mean, what were the odds of the thing I feared the most actually coming to pass? It would be like being the old man who was afraid to fly in an Alanis Morrisette song. It just wouldn’t happen… would it?

what were the odds of the thing I feared the most actually coming to pass? It would be like being the old man who was afraid to fly in an Alanis Morrisette song. It just wouldn’t happen… would it?

When we got home, Terry told me he wouldn’t be going back to work: instead he booked an emergency appointment with his doctor, and I sat at my desk at work, showing my engagement ring to my colleagues when they asked, and feeling totally unable to accept their congratulations. I knew I wouldn’t be getting married. I knew it was just a matter of time before I got the call confirming my worst fears.

The call came on Christmas Eve, at lunchtime. I was in a store at the time, buying Terry’s Christmas present. I remember watching the assistant lift it down from the shelf, and wondering if this was the last gift I would ever get to buy for him, or whether he would be around to actually use it. (It was a Gameboy Advance. They were, like, so totally cool back then.) It’s only now, as I write that down, that I realise how ridiculous it sounds. I was SO SURE there was something seriously wrong. So sure. And yet… I’m a hypochondriac. A born worrier. I’m almost ALWAYS sure there’s something terribly wrong with someone I love. And again, I was using this knowledge almost as a comfort blanket. I’ve felt this way before. I’ve had these fears before. I was wrong then, I could be wrong now.

It was the only time I was ever right about anything. It gives me no joy to say that.

When my phone rung, I could tell right away that Terry was horribly upset. “You’ll never believe what the doctor said to me,” he began. I turned and walked out of the shop, my stomach churning.

The conversation, it turned out, had started with the words, “I’m afraid I have some very bad news.” Well, you never want to hear THOSE words, do you? The “bad news”, however, turned out to be no news at all to Terry. “You have something wrong with your kidneys,” the doctor began, before Terry interrupted him. “Wait,” he said, “I already know I have something wrong with my kidneys. Is this the same thing?”

The conversation, it turned out, had started with the words, “I’m afraid I have some very bad news.” Well, you never want to hear THOSE words, do you?

A pause, and a lot of rustling while the doctor checked Terry’s file.

“Oh,” he said, sounding sheepish. “I didn’t realise this had already been diagnosed. Yes, it’s the thing you already know about.” He went on to say that while Terry’s condition seemed to have gotten a little worse, according to the bloodwork they’d done that day, it wasn’t a significant enough change to suggest this was the reason for the acid reflux. “I’ll make an appointment for you with a kidney specialist sometime in the New Year, anyway,” the doctor said, “Just to be sure.” In the meantime, Terry was to continue with the antacids. Awesome.

That night we drove to my parents’ house. We spent the night there, and exchanged gifts with them on Christmas morning before driving to Terry’s mum’s house to spend a bit of time with her and the rest of Terry’s family. On the way back to my parents’ place for dinner, Terry suggested we stop off at home to drop off some of the gifts we’d received, and while we were there, he checked the messages on the answerphone.

One new message.

It was Terry’s doctor.

He’d contacted the kidney department at the local hospital, and a consultant there had looked at Terry’s blood results. The consultant was so concerned by what he’d seen that he’d booked an emergency appointment for the very next day.

9am, Boxing Day. They don’t ask you to come into hospital then unless there’s something pretty seriously wrong, do they?

We drove to my parents’ house in silence, and when we got there Terry switched off the engine and we sat there for a few minutes.

“Look,” said Terry, as if continuing a silent conversation we’d been conducting all the way there, “It’s no big deal. Worst case scenario, they just give me a transplant, or hook me up to a dialysis machine or something. It’s not the end of the world.”

It felt like it though. And as I sat there in that car, on Christmas Day 2003, I remember feeling that I’d somehow slipped out of my body and into someone else’s life. “Transplant” and “dialysis” were words so foreign to me that Terry may as well have been speaking another language. Transplants were things that happened in movies, and to other people. They weren’t something that happened to us. Terry was a kind-hearted man in his twenties, who’d just got his first job out of university, bought his first house, gotten engaged. We had a small white wolf dog, and a wedding to plan. I, meanwhile, was… well, I was a bit of an idiot, really. Just a silly, slightly neurotic girl who’d lived a pretty privileged life up to that point, and who couldn’t really imagine anything different. I was as ill-equipped as it’s possible to be for what lay ahead of us: I mean, you’ve all seen how badly I handle the idea that a holiday could be cancelled, so the news that the plans I’d made for the rest of my life could be cancelled made my brain pretty much short-circuit. I had absolutely no idea how I would handle it, and I was pretty sure I wouldn’t be able to. I didn’t even know what dialysis WAS, for Christ’s sake.

It wasn’t the best Christmas we’ve ever had.

And the next day we got up, drove to hospital, and everything changed.

PART TWO | PART 3