Experience: I have an artificial heart

Last year, aged 23, I was diagnosed with cancer of the heart. It’s extremely rare – doctors often tell me it’s the first case of heart cancer they’ve seen. The only way to save my life was to remove my heart. It was replaced with a total artificial heart (TAH), which is made of biocompatible plastic and acts as a pump.

Before I became ill, I was a typical busy student, having started my master’s at Oxford. I didn’t smoke or drink, and would do high-intensity interval training at the gym and cycle for at least an hour a day. I began to feel tired and headachy. I assumed I had freshers’ flu and went to see a GP, who said I looked “waxy”. He asked me to do a stool and urine sample and come back the following day. My energy was at rock bottom, so I called my parents. I just wanted to go home. I thought it was a virus.

My dad picked me up to take me home and before I got to the front door, I collapsed and threw up – in it was what looked like dark coffee granules. We suspected it was blood, so called 111. The receiver asked if I looked “deathly”. My parents answered that yes, I did. An ambulance was dispatched immediately.

I was told I had sepsis. At the hospital, they found I also had pneumonia and an inflamed gall bladder, and that my stomach was bleeding. I struggled to breathe and fluid was building up in my body. My organs began to fail. Soon, a heart specialist discovered a mass on my heart’s right ventricle, the size of a large egg. It was stopping my heart from pumping. I was in shock. During emergency surgery, they found the tumour was embedded in the heart’s wall. Then the biopsy results came back as cancer – grade 3 spindle cell sarcoma of the heart. The bottom of my world fell out.

I had chemotherapy but the cancer grew with astonishing speed. The doctors didn’t think I’d make it. I was given the choice of radical surgery, or to be “made comfortable”. I chose surgery. A pioneering surgeon, André Simon at Harefield hospital, was the one person who could save my life, in an operation that had not been attempted before. He hoped to save my heart, but if not, proposed fitting a TAH. It was the first time I’d heard of it. I was terrified, but desperate to live.

By the time they opened me up, the tumour had grown to the size of a fist. My heart had changed shape to try to allow blood to squeeze around the cancerous tissue. But there was no way they could salvage it. When I came round I was just relieved to be alive. But I could hear the loud thumping of my new heart, which was connected to a large pump. I now have a smaller pump that weighs 7kg and fits in a backpack. It’s still noisy, but I put up with it. My heart’s valves are made of metal, and when people hug me, they make a click-clack noise.

I came home from hospital in April. I’m the 19th person in the UK to get a TAH, and only the second of those to leave hospital. Apparently, I’m the only person in the world with a TAH as a treatment for heart cancer (they are usually fitted for heart failure). A few years ago, they didn’t have the right size and strength for women and teenagers (50cc), only the 70cc for men. I’m attached to the pump by two tubes coming out of my stomach. I have to make sure it’s charged at all times. At cafes, we have to sit near plug sockets. I have to plug myself in to stay alive. The batteries last for 2½ hours, but at about the two-hour point, a loud alarm sounds. It’s happened once, in a supermarket.

I’ve been cancer-free since the removal of my heart and if I remain so until January, I will go on the transplant list. Getting a donor heart will give me back some normality. I’m returning to university in October, when I will apply for PhDs. My dreams have changed. I will most likely have to adopt in order to have children (because of the chemotherapy and the impact a pregnancy could have on my heart). I hoped to visit 30 countries before 30, but now it’s before I’m 50.

It has been the most difficult journey and one that’s still not over. I’m scared of the cancer returning, of going under the knife for the third time. But I’m also hopeful that I’ll get back to not only living, but thriving. I don’t want to be heartless for any longer than I need to be.

As told to Sophie Haydock

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