One year ago I went from running every day, all over the world, to having less than 48 hours to live. I still have to look at my scar to believe it. This story is an attempt to understand what happened.
It was first published in Like the Wind Magazine in July 2017.
A Runner Like You
13th January 2017
I’m lying in intensive care at the top of the super urgent liver transplant list. Although I’m not fully aware of this because toxins are flooding my brain and I’m struggling to recognise my husband.
Ten Weeks Earlier
I’m wearing a high viz jacket, holding a megaphone, and running around like a loon while directing 200 runners in the first ever Running the Rift Marathonin rural Uganda.
I’m a runner. Just like you…
You’re 30 years old, medically top notch, fit as a ruddy fiddle. In the last 12 months you’ve…where to start! You’ve covered 6000 km by bike across mountainous, beautiful Europe with your fiance, rounding it off by getting married in Slovenia. Then onto Uganda where you spent weeks and weeks running and working non stop to make the five-day african marathon event you’ve been planning for 18 months come to life. You averaged three hours sleep a night for the duration but who cares when the reward was seeing the beaming faces of all your runners and giving the thousands of pounds proceeds to a charity genuinely in need. You’ve even held down a ‘real’ job the whole time. You are a busy bee, and you wouldn’t have it any other way. You fly home from Africa feeling royally exhausted, but obviously you would right — your mind, body and emotions have been going like the clappers.
But your lethargy continues and your mind just isn’t quite on point. Under coercion you hit A&E where they discover “something unusual” with your liver (liver? Who even thinks about their liver?!) but “It’s probably just a virus and your body will fight it and you’ll be better by Christmas.” How annoying when you’ve got a Spring marathon to train like a demon for.
Over the next few weeks blood tests continue, never a diagnosis but always the message “just a virus, you’ll fight it” so you’re not concerned, just annoyed. Annoyed that your running is getting slower, shamefully frustrated that your husband’s running is going so well, and you’ve barely got the energy or a 10 minute mile. And you’re not even allowed so much as a mulled wine at Christmas.
Slowly other symptoms appear. Your start swelling up and a particularly unattractive rash appears. You feel embarrassed running, you’re so slow and you definitely don’t look like the athletic runner you were out in Uganda. Your swollen ankles rub on your running shoes. More blood tests, hope, but never any answers. On New Year’s Day you start turning yellow.
You’re admitted, fairly unwillingly, to Cardiff Hospital on Tuesday 2nd January. You reckon you’ll be out by the 5th, the weekend at the latest.
You’re just a bit tired, the virus will clear up. The doctor comes to see you — now we can get some pills and get better and get on — you think!
“You may need a liver transplant” he says.
How do you feel now?
You are a totally normal person, so so NORMAL, a runner…and you may need a new liver. Ridiculous. Utterly ridiculous isn’t it? Never going to happen.
Family and friends want to visit you. If you see them then you’re admitting you’re sick and you’re not sick. Are you? You’re just tired. Well…tired and your limbs are so swollen you can’t get baggy pyjama bottoms on. And your eyes are yellow and your skin is yellow and feels like wax. And your hair is greasy no matter how much you wash it. And you have that rather manky rash. And it hurts when your husband puts his hand on your arm, or kisses your cheek.
But you just need to turn that corner and they’ve put you on steroids so that’ll do the job. Your running shoes are by your bed and you work out in your mind how long you’ll have to train if you get better today / tomorrow / the day after…
And then you’re crying when anybody mentions “cannula” because they’ve blown every vein in both your arms and you’re covered in bruises. You can’t look in the mirror because your own face scares you. You don’t look like you, you don’t look anything like a runner. You’re told your liver is no longer clotting blood. You have to have a liver biopsy through a vein in your neck.
And they keep mentioning transplant. As though that’s nothing. So you really need to turn that corner because otherwise they’re taking you to a liver specialist Hospital in London and that will mean it’s all a bit more real.
Then you’re on a stretcher in an ambulance, lights flashing, hurtling along
You’re at the specialist hospital. Surrounded by doctor after doctor after doctor after doctor after doctor and you feel relieved because with this many doctors, taking so much blood, asking so many detailed questions, sending you for so many screenings they’ll find the solution in no time and you can go back home!
They ask you what you were doing in Uganda, “organising a marathon” you say. They just write it down like it’s nothing important and you know it is nothing important. But you still love answering that question.
Friends and family come and visit and you start to crave it, you don’t like it when they leave.
The doctors haven’t spoken about transplant in detail. That can only mean it’s unlikely. Yet still no diagnosis, no idea of what is going on or how to fix it.
Now they’re saying they’re going to try one last thing — an intense, intravenous course of steroids.
“One last thing.”
At what point do you text your friends, your boss and tell them that you might be having a transplant? This is ridiculous, you can’t tell them that!
This is ridiculous.
The doctors are back. The steroids are cancelled. Your bloods are worse. The window is closing. You forget about the texts. You forget about running. You are now officially at the top of the super urgent liver transplant list.
How do you feel now?
Guilt. I was racked with guilt.
I needed somebody to die for me.
Now everything moves quickly. You’re given an hour to come up with a list of questions you “might have”. Where do you start? If you can still have a family? If you can run again? If I can travel to Uganda to organise the next marathon? And what difference will having answers make anyway, there are no options. You have a 5% chance of survival without a new liver. You’re told you need a plan B incase a liver can’t be found. The plan B is using your mum, dad or sister as a live donor.
You do not want that for them. But nobody is taking any notice. The voice that was shouting through a megaphone two months ago, is now too small to be heard.
Horribly, you feel less guilty about the donor who will die for you because you so badly don’t want this for your family.
Does that make you a really terrible person?
There are people around you always but it’s harder and harder to keep up with them in your head. The doctors are making you hold your hands out and asking the date. They do these tests over and over and over and over and over.
Your husband is always by your side, always smiling at you, always positive. So you know it will all be fine. He tells you about something called the Transplant Games and that you’ll get to run for GB. You smile through swollen lips, you love him for finding a silver lining.
Doctors come. You hold your hands out. Now they are flapping backwards. Why can’t you control your hands?
“What year is it?”
You know this. You know this. You know this. Why can’t you say this. Eventually you do, it’s 2017, but you see the doctors’ faces. Toxins are now reaching your brain.
There’s so much going on, so many people around, you’re confused. Your bloated arms are covered in needle pricks, bruises, every part of you is tender. More blood tests. More sleep.
Your hands are flapping a lot now. Your words are slurring. Later your husband tells you you were looking at him as though you had no idea who he was.
You wake up from a deep, deep sleep and you’re in intensive care, covered in lines. You have a catheter. You must have had the op. Relief.
But later your husband squeezes your hand “Don’t worry baby, they’ll find you a liver. You’ll have the op. You’ll be OK.”
During these days my husband kept a list of events to revisit in case the worst happened. To help him understand why. At this moment he wrote “she looked terrified”.
For hours you lie in intensive care in and out of consciousness. Your family’s livers are not suitable. You’re pleased. Even though you know without a donor you won’t see Monday. Your family are with you, they have to remind you to breathe.
And still no liver. But then it is Friday 13th.
“Breathe remember, that’s it…”
You wake up, it’s dark. Your coordinator is coming over to your bed.
“We’ve found a liver.”
You cry, you grin. Your husband whispers in your ear that when you’re better he’ll take you to Penarth for ice cream on the pier. Happiness.
You wake up. You’ve had the op. You feel weak and pathetic. You’re no athlete anymore.
But you are alive.
And you cannot, cannot stop smiling. Everything glows!
So many emotions followed, still follow, but none stronger than the all consuming gratitude you feel for everybody, especially for the person who signed the organ register and has given you your life back.
The doctors never do find out what happened to your liver. It doesn’t feel important anymore. They say your recovery is very fast. They say that it’s because you’re a runner. You know it — a runner’s body and a runner’s stubbornness!
A doctor comes and asks “What were you doing in Uganda?” Setting up a marathon I say. He looks up… “Not Running the Rift Marathon was it?” YES I almost shout, that’s my marathon! And for the first time in weeks a doctor looks at me like I wasn’t a patient, like I was a person with a life outside being sick. And the pride! He’s actually heard of my race. I’m getting better, Uganda here I come — Running the Rift Marathon 2017 is a go!
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