A WOMAN who had to have her entire heart removed because of cancer has spoken about the extraordinary challenges of having to carry her new artificial heart around in a backpack.
Rebecca Henderson, who is one of just two people in the UK who have an artificial heart, has to carry the 7kg machine with her wherever she goes, connected to her body through two tubes in her midriff.
With the batteries lasting just two-and-a-half hours, the 24-year-old from Bicester has to make sure she is plugged in and charged all of the time and even carries an entire spare.
Once, when the machine's emergency alarm went off, her parents had just four minutes to switch over to her spare.
The Oxford University student was given the artificial heart in a groundbreaking operation in January, just three months after she was told she had cancer.
The fitness fanatic was rushed to the John Radcliffe Hospital last October after collapsing one day and vomiting blood.
Doctors diagnosed her straight away with sepsis, but in November discovered the root cause: a spindle cell sarcoma in the right ventricle of her heart.
Miss Henderson said: "Sepsis saved my life in a strange way, because it meant they found the tumour.
"I’d been feeling unwell for a while, with a ridiculously high heart rate. I kept going to the doctor about it, but they told me it was just anxiety. I remember one GP saying, ‘we’ll miss something serious one day, if you keep coming in like this’, then I found out it was heart cancer."
"Telling my dad was so hard. I phoned him and said, ‘Dad, it’s cancer’, and it was just the worst silence ever."
Doctors were able to remove the majority of the tumour and Miss Henderson started a course of chemotherapy.
However in January she became seriously unwell again and was rushed back to the John Radcliffe where said she collapsed.
Her mum Linda, who was with her at the time, said: "I shouted for help, and the doctors raced into the room. It was devastating.
"They had to shut the door in my face, as it was a proper emergency. I just burst into tears."
Miss Henderson had suffered a cardiac arrest. She was resuscitated, but doctors then found that the tumour had returned and was growing.
Mrs Henderson recalled: "They told us she wouldn’t make 24 hours. They told us not to leave her side, so we slept in chairs by her bed for three days. Rebecca’s oncologist sat with us and cried."
Miss Henderson pulled through, but doctors decided that the only way to save her life was to replace her cancerous heart with a Total Artificial Heart (TAH).
The artificial heart that they wanted to give Miss Henderson is a brand called a Freedom Driver: weighing 7kg and stored in a backpack, the machine pumps blood around the body through two tubes inserted into the front of the body just below the chest, connected to an external motor.
Her new heart was connected in an operation performed by pioneering cardiothoracic surgeon Andre Simon at Harefield Hospital, London.
Miss Henderson said the artificial heart had given a new lease of life, but carries extraordinary challenges.
She said: "Once, the machine’s emergency alarm went off, signalling that we had to change to the spare machine. My parents had four minutes to change the machine over.
"They were calm, but I was terrified: the ambulance picked us up and took us straight to Harefield, because if the spare machine were also to malfunction, I couldn’t get CPR or be defibbed – that would be it."
A safety valve in the machine means that only one battery can be removed at any time.
Rebecca said: "That’s probably a good thing, because I know there were days when I was in hospital, when I thought, ‘I’ve had enough, I want to unplug myself’.
"I’d rather be honest, as so many people tell me, ‘You’re so brave’, but the simple fact is, I don’t always feel brave: it’s the people around me that have so much courage. I think people should be less scared of saying that in an awful situation, sometimes you feel like sh*t.
“My machine keeps me alive. I love it and I’m so grateful for it, but it affects my life a lot. I need a carer 24-7. I can’t have a minute without the machine pounding, and it’s difficult in public.
"It’s hard to feel beautiful when you have a lot of scars. I look at pictures of who I used to be and think, ‘who was that? I don’t recognise them’."
Miss Henderson is hoping to one day get her artificial heart replaced, and have a real one again: if she remains cancer-free until next January, she will go on the heart transplant list.
She said: “I spoke to my psychologist about transplant surgery, because it’s risky. I said, ‘how do I cope knowing that, no matter how healthy I am going into the surgery, it could be the end?’.
"She told me to think of the legacy I’d want to leave. I thought that I’d want people to remember I was there for my sister when she needed me, that I kept going as long as I could with my course, and, I’d like my friends to know how much I love and care about them.
"There are days when it’s tough, days when the machine feels particularly heavy. But, eight months ago, people were expecting me to die. Now, they’re expecting me to live."
Rebecca is raising money for the Harefield Transplant Appeal, to raise awareness about organ donation.
She is also hoping to raise more awareness about the dangers of sepsis – the disease which, ironically, might have saved her life.
She explained: "Cardiac cancer is incredibly rare and usually found in post mortems, not living people, and that's what would have happened to me if I hadn't had sepsis: I would have just been cycling along one day, my heart wouldn't have been able to take it, and I would have died.
"With sepsis, people can often get what they think is just 'freshers flu' – feeling tired, feeling hungover, vomiting, when actually, it can be something a lot more serious. Look out for it in your friends: if your friend hasn't been drinking, but they say they've been feeling hungover for a few days, they should get that checked out."
To find out more about Miss Henderson's fundraising go to rbhcharity.org and search for ‘Becca’.
For more information on the warning signs of sepsis, go to nhs.uk/conditions/sepsis
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