Living with an artificial heart: James’s story
Originally published at bhf.org.uk, written by Lee Kettle.
When James Maund walks into a public place, people might ask what is inside the bag he carries around his waist.
Most will expect the usual response — maybe his keys, wallet, phone and any other form of personal belongings. But that turns to surprise when James explains that the bag carries life-saving equipment to keep his heart working.
James is one of around 300 people in the UK living with a left ventricular assist device (LVAD). This battery-operated mechanical pump is surgically implanted into patients with end-stage heart failure who are on the waiting list for a heart transplant.
An LVAD helps the failing heart by improving blood flow around the body. Blood drains from the ventricle into the LVAD, with the device pushing the blood out into the aorta, where it then flows to the rest of the body.
A fine cable called the driveline connects the LVAD, which is inside the body, through the skin and to a controller, which is outside the body.
In James’s case, the wire protrudes from out of his stomach and connects to the controller, which is normally carried in the bag around his waist. The controller senses the function of the LVAD and controls the power to make it work, ensuring that James’s heart is working as effectively as it can.
‘I felt myself slow down’
James, from Gloucester, began feeling unwell in summer 2016.
“At the time, I was an export manager and had been working in Asia,” he said. “I just felt myself slow down and I was becoming weak and tired all the time. When I was back in the UK, I went to the doctors and they assumed I was suffering from a tropical disease.”
When James was admitted to hospital for tests, it was a chance encounter with a doctor when a heart problem was first suspected.
“I was standing against a wall, waiting for a test and you could visibly see the pulse throbbing in my neck,” added James. “I got into a conversation with a specialist and he told me that it was likely I had something wrong with my heart.”
Scans revealed that the specialist was right. James was found to have dilated cardiomyopathy, where his heart had become enlarged and baggy, so was unable to pump blood around his body effectively.
Doctors told James that his heart muscle was functioning at 16 per cent of normal power, and that he would need a heart transplant in the future. But first, James would need an LVAD to support his heart, while he waited to see if he met the criteria to be eligible for a transplant.
“I hadn’t even heard of what an LVAD was before,” said James. “I was told that I was too ill to have a heart transplant but the LVAD would help my heart whilst I waited for one. Two weeks earlier I had assumed I was living with a tropical disease, so to find out that my heart was failing was just a complete shock.”
By this point, James had lost two stone in weight. He underwent high-risk open heart surgery at Queen Elizabeth Hospital Birmingham in October 2016, at the age of 44. This involved connecting one end of the LVAD pump to the heart’s left ventricle and the other end to the aorta.
Living with an LVAD
Life after the LVAD was implanted was tough for James at first.
“For the first three months, I felt concerned,” he said. “The biggest issue I had was how I was going to provide for my family. I had to take time off work initially and I wondered how long that would take and if I was really going to get any better.”
Then came the further issues the LVAD presented.
“I struggled with how this would affect my body image — even how I would be judged for carrying a bag around with me at all times,” he said. “Whenever I leave the house, I have the added anxiety of ensuring I’ve brought everything I need, including a spare battery pack. The equipment is bulky, and I can’t live without it.
“Even simple things like having a bath or going for a swim with the kids while on holiday — I can’t do that, because the device cannot get wet.”
However, James has a positive outlook on life, and knows that the LVAD is helping to keep him alive. He is now eligible for a heart transplant and is currently on the waiting list for a new heart.
But, most importantly for James, the LVAD means that he can continue to spend quality time with his family, including his four children. He has also managed to continue work as an account manager for a cider brand.
“My kids are completely used to it now and jokingly say I’m like a robot,” said James, now aged 48. “I’ve been able to carry on work and support my family. My work involves attending outdoor festivals and even with that, I’ve not let the LVAD or my heart condition stop me.
“Without the LVAD, I simply wouldn’t be able to achieve what I have achieved.”
Improving quality of life
James will be among 150 LVAD patients who will participate in a research project funded by the BHF at the University of Birmingham.
The project aims to develop a patient reported outcome measure (PROM) for LVAD recipients. PROMs are a questionnaire that asks people about their symptoms, how they are feeling or the impact of their condition on their quality of life. Using PROMs in clinical practice can help clinicians identify what is going well and what might need addressing in a patient’s care. PROMs are also used in research to measure the impact of new treatments on the person’s symptoms or quality of life.
Currently, the quality of life of LVAD recipients cannot be assessed using the available PROMs as they do not address the unique issues relevant to LVAD recipients. This includes psychological issues, such as coming to terms with the LVAD, anxieties over the equipment and impact on body image.
Thanks to £240,000 funding from us, researchers will work with patients from four centres across the UK to produce a new PROM that will better measure their quality of life.
It is hoped this research will inform and improve the clinical care of those living with an LVAD and even advise future research, policies and design proposals for the device.
Lead researcher, Dr Anita Slade from the University of Birmingham, said the new PROM will be beneficial for LVAD patients both in future research and clinical practice.
“Developing a new PROM with input from patients will ensure their voices are central to their care, and allow us to better understand how to improve their quality of life now and in the future,” she added.
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Originally published at https://www.bhf.org.uk.
Living with an artificial heart: James’s story was originally published in British Heart Foundation on Medium, where people are continuing the conversation by highlighting and responding to this story.