Call Serene Lee the bionic woman. The 35-year-old has no heartbeat of her own; instead, her heart is fully powered by a mechanical pump that runs on a set of external batteries. These batteries have to be recharged every 12 hours, or she could die. Serene suffers from dilated cardiomyopathy, a disease of the heart muscle that affects as many as one in 250 people worldwide. The condition causes a weakening of the heart such that it is unable to pump blood efficiently, which often leads to heart failure.

A grim diagnosis
The bubbly mother of three was diagnosed with the disease in 2011, after experiencing several breathless spells. Her breathing problems were further exacerbated by a holiday to the Swiss Alps, due to the thin air in the mountains.

“Besides breathlessness, I suffered from other symptoms such as poor appetite and water retention, and also had no energy for the simplest tasks, such as walking from one place to another,” she recalls.
The diagnosis wasn’t entirely unexpected, though. Dilated cardiomyopathy is often inherited, and Serene’s mother was diagnosed with the same condition 16 years ago. Her mum had a heart transplant almost immediately after being diagnosed.

“At the back of my mind, I was aware this might eventually happen,” she admits. “However, I didn’t expect the disease to manifest so severely. In fact, when I was diagnosed, my doctor told me I was left with just 22 per cent of normal heart function.”

The next year was a flurry of medical check-ups and hospital stays. Serene quit her job as a full-time administrative assistant at a childcare centre, and found herself checking in and out of the hospital often to seek treatment for breathlessness and water retention.

However, her condition continued to deteriorate rapidly, to the point where she had to be warded in the intensive-care unit. Her doctor had earlier advised her to have a left ventricular assist device (LVAD) fitted. So even though she was initially reluctant, she decided to go ahead with the procedure.

An LVAD is a mechanical pump about the size of a golf ball, implanted just below the heart, with one end attached to the heart’s left ventricle and the other, to the aorta, the body’s main artery. It is powered by batteries outside the body.

To install the LVAD, doctors made an incision on Serene’s breastbone to gain access to her hear t. Another incision was made above her left abdomen. This permanent opening, about the size of a five-cent coin, is where the LVAD’s cables exit the body and connect to a set of four rechargeable lithium ion batteries.
After the operation, Serene spent 18 days in hospital – including four in the intensive-care unit – before being discharged.

A world of change
Adjusting to the mechanical pump wasn’t easy. “At first, I wasn’t accustomed to having cables sticking out of my body. I also had to get used to carrying the batteries, which weigh about 2kg, around with me wherever I went – even to the washroom!” she shares.

Daily tasks, like showering, have become more time-consuming as well. “The wound on my abdomen no longer hurts, but I have to cover it with cling wrap to prevent water from entering it when I bathe. I also have to place the batteries in a ziplock bag to prevent them from getting wet. Then, after showering, I have to spend 10 to 15 minutes dressing my wound with gauze and a saline cleansing solution.”

A world of change
Adjusting to the mechanical pump wasn’t easy. “At first, I wasn’t accustomed to having cables sticking out of my body. I also had to get used to carrying the batteries, which weigh about 2kg, around with me wherever I went – even to the washroom!” she shares.

Daily tasks, like showering, have become more time-consuming as well. “The wound on my abdomen no longer hurts, but I have to cover it with cling wrap to prevent water from entering it when I bathe. I also have to place the batteries in a ziplock bag to prevent them from getting wet. Then, after showering, I have to spend 10 to 15 minutes dressing my wound with gauze and a saline cleansing solution.”

Her eating habits have changed, too. “For example, I can’t take soya-based products now, as they cause my blood to thicken. This might clog my heart pump, which would spell disaster,” she says. “My children, aged 15, 12 and five, help me watch my diet – they tell me off whenever they catch me sneaking a bite of beancurd!”

Even more crucially, Serene has to remember to recharge the batteries regularly. While the LVAD is connected to a set of four batteries, it runs on two at a time, ensuring that Serene always has backup power for her heart pump. Each pair of batteries lasts for five to six hours, allowing her to go about her day and then recharge all four batteries when she comes home at night.

Making peace
Serene says she has come to accept these changes as part and parcel of her condition, and is grateful that the LVAD has enabled her to maintain a relatively high quality of life. “For instance, while I can’t go swimming or participate in contact sports, I can still do light to moderate physical activity, such as walking and jogging – while carrying the batteries, of course. In fact, I always find myself running after the bus!” she jokes.

“My family has also been tremendously supportive. At first, my children actually went up to their grandmother (my mother) and accused her of passing the disease to me,” she laughs. “However, they have come to accept my condition, especially after seeing that I can still lead a well-rounded life – I can travel, take them on family outings and do things that other mothers do.

“They also help out the best they can – by helping to dress my wound and reminding me to charge my batteries. My husband is also very stoic, and has supported me readily from day one.”

However, there’s a high probability that Serene’s children will inherit the disease, but that’s something the family is prepared for. “There’s no way of predicting if familial dilated cardiomyopathy will develop, and at what age. There’s no way to prevent it from happening as well. We’ll just have to deal with it when the time comes,” Serene says candidly.

Ever the optimist, she says the condition has helped her forge a closer relationship with her mother. “While my mum didn’t have to install an LVAD, she’s the person who best understands what I’m going through. We weren’t all that close before I was diagnosed, but now, we often go out for meals and spend quality time together.”

Staying positive
These days, Serene actively channels her energy into helping others. She is currently the chairman of the LVAD Support Group, a 38-member community that organises talks and networking sessions for people who have been fitted with an LVAD as a result of various heart conditions – not just dilated cardiomyopathy. She also spends time visiting hospital wards to spread her infectious cheer and enthusiasm to fellow patients.

Although Serene can survive on the LVAD indefinitely, she is hoping to receive a heart transplant in the next few years, so she doesn’t have to rely on batteries to keep her alive.

In the meantime, she is intent on living life to the fullest. “Life is short, and you never know what will happen to you tomorrow. I’m immensely thankful to be alive, and I’m also grateful for the little things in life, such as being able to spend quality time with my husband and children,” says Serene. “I’ve also never appreciated the simple, fundamental act of breathing as much as I do now.”

This article was originally published in Simply Her August 2015.