Terry's transplant story

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.

transplant storyAt 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.


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  • wow. what you’ve gone through!
    couldn’t stop reading. waiting for the rest of the story.
    respect for you both

    December 13, 2010
  • That is so scary. Can’t wait to read the rest of it, so i can reassure myself that everything is fine. I enjoy reading your blogs so much. Hope Terry is ok.

    December 13, 2010
  • Big hugs for both of you two. I can’t even begin to imagine how scary it must have been. 🙁

    December 13, 2010
  • Amber, you are such a gifted storyteller…I’m just sorry that this touching story happens to be about the love of your life. But I know from your previous post that things are OK, so I will remember those words as well.

    My father has kidney issues…they run in his family. His brother had an emergency transplant and has done very well. My dad has both his kidneys but only one functions partially. He has had a total life turnaround as a result. It’s very scary. But he’s doing OK.

    I’m glad that you and Terry made it to 10 and that you are well. I hope that you have many, many more years together!

    ♥ V
    twitter: @gritandglamour

    December 13, 2010
  • Jasmine


    As I read this story tears fill my eyes as I’m overwhelmed with emotion. My brother also had ESRD, dialysis and a transplant. Even though it’s been years since, and I wasn’t even a teen yet, I vividly remember those same phone calls that make your heart stop. Knowing that you have experienced something so similar has drawn me to your site and kept me

    December 13, 2010
  • Siel


    What a touching story! You’ve gone through a lot together…
    I’m happy for you two that it all turned out well!

    December 13, 2010
  • my throat hurts

    December 13, 2010
  • ilexica


    My other half was diagnosed with liver failure recently – again, the words ‘transplant’ have been bandied about a lot. I’ve really appreciated your posts and they were the first place I looked when I was given the news. So thank you, you’ve been really helpful.

    December 13, 2010
  • It seems strange to compliment you on your wonderful writing when the subject is so terrifying, but such compelling honesty can’t go unremarked upon.

    We know that there have been many Christmases for the two of you together and well since 2003. But my heart repeatedly threatened to stop while reading this.

    You’re an amazing couple and support to each other. It’s beautiful to see.

    December 13, 2010
  • Nikki G


    OK. I am seriously teary here. How awful to have to watch someone that you love go through this. The holidays have to be a mixed bag of emotions for you, but at least Terry is better now. Here’s to many more anniversaries, Christmases, and Boxing Days!

    December 13, 2010
  • Even though I know things worked out well in the end, my stomach clenched as I was reading this. I so felt for you and Terry and your shock on getting that phone message. I’m sorry that you both — that anyone — has to go through this. But if it is any consolation at all, you write about it so well, and I look forward to reading more.

    December 14, 2010
  • Dear Amber,
    I just wanted you to know that we understand how much courage it is taking you to write all this down. It must be like reliving it all over again. So thank you, for doing this, so honestly.

    December 14, 2010
  • What a touching story! You’ve gone through a lot together… I’m happy for you two that it all turned out well!

    December 22, 2010
  • Myra


    This hurts

    February 9, 2018