My story of heart valve surgery

Henrietta Tye

Henrietta Tye, 69, from West Cornwall, describes her experience of heart valve disease and mitral valve repair.

“May I have a listen too?” The medical students stood around my hospital bed, stethoscopes in hand, as their professor, a lively woman doctor from India, explained how to detect the sound of a leaky mitral heart valve. “It’s an especially noisy one, good for students to hear,” she said.

I sat bare-chested, feeling like a specimen but intrigued the valve was worthy of medical attention. “Yes, of course,” I answered.

Now, after successful surgery, the repaired valve sounds like any ordinary one but for me it is a precious gift that has extended life and revived my energy. The repaired valve is a gift in every sense since surgery was paid for by the NHS, including all tests, medications, and consultations.

"For me the repaired valve is a precious gift that has extended life and revived my energy"

I am a 69-year-old US expatriate living in a village in West Cornwall with my husband Richard, a British citizen. For twelve years we ran the village post office before retiring in October 2008. During our years here we have received high-quality free health care, and now that we are over 60 even medications are free.

“We pay for this with our taxes,” says Richard who takes free medical care for granted, having grown up in London. But as a US citizen, I continue to be amazed the UK has managed to finance the health service on the back of citizens’ taxes since the early 1940s, especially since our UK taxes work out to be no higher than those we were paying back in the States.

Diagnosis

Some chest congestion and frequent breathlessness were my first symptoms of a health problem. Just walking up the eight outdoor steps to our front door left me unable to speak for a few seconds. Listening to my chest, the efficient doctor in our local surgery quickly identified a leaky heart mitral valve as the likely culprit and explained, “You might have had undiagnosed rheumatic fever as a child, or could have been born with the problem which hasn’t shown itself until now.”

He scheduled an echocardiogram, a diagnostic test that confirmed the valve was leaking. Having a heart condition explained my symptoms, but was the last thing I had anticipated, even though my Dad had died of a sudden heart attack at age 74. Being healthy and reasonably fit I was reluctant to admit to the problem, forgetting all ages and types of people, even celebrities, could have heart disease. It was somehow reassuring to learn both Robin Williams and Barbara Bush underwent successful mitral valve surgery shortly before mine.

I learned that the mitral valve ensures blood keeps moving through the left side of the heart after it has picked up oxygen in the lungs. Named for its resemblance to a bishop’s mitre, a healthy mitral valve looks like a tidy cone formed by two leaflets designed to prevent blood from flowing backwards. Sometimes, as in my case, the leaflets slip out of position (become prolapsed), allowing some blood to leak backward (or regurgitate.)

I was referred to Dr Evans, a lean, no-nonsense cardiologist at Royal Cornwall Hospital, Truro, who prescribed blood pressure medication and arranged for an echo-cardiogram, a sonogram using sound waves to create a moving picture of the heart. The hazy image on the computer screen showed floppy valve leaflets which bore no resemblance to the cone shape in the Internet illustrations. And they made an unhealthy whooshing noise when the technician flipped the sound switch.

Soon after, in April 2008, I was given an internal exam under anaesthesia called a transesophagal cardiogram , which involved swallowing a device that scans the heart from close up to evaluate how much blood is leaking from the valve. Dr. Evans rated my valve “a 2 out of 5” and said it should be checked yearly.

Deterioration

But deterioration speeded up more quickly than he had anticipated. Three months later in September my left ear was nearly deaf and sounding “watery,” as if I’d been swimming. The doctor at our clinic first diagnosed labyrinthitis, but a few days later, after I developed a high fever, achy left arm and chest rash, he referred me to the hospital for tests to check bacteria levels in the blood. Infective endocarditis was the diagnosis, a condition that is rare but more likely if you have a faulty valve. It was quickly brought under control by strong antibiotics administered intravenously over the next two weeks.

During that two week hospital stay in September 2008, I was given another internal scan, which showed that regurgitation of the mitral valve had deteriorated to “a 4 out of 5” condition. Through October I experienced mild dizzy spells and tired easily, which convinced Dr Evans it was time to schedule valve repair surgery. He said that surgery to repair the valve is far more common than replacing it and has a higher rate of success.

In keeping with the NHS policy to give patients a choice of doctors and hospitals, I opted for surgeon Neil Moat, a well known expert in heart valve repair at the Royal Brompton Hospital in London. As required before heart surgery, our local hospital (Royal Cornwall Hospital, Truro) carried out blood tests, and a cardiac catheterisation (angiogram) to check the condition of the coronary arteries. Then in February 2009 Brompton Hospital sent booklets describing hospital procedures and giving advice on what to bring to the hospital.

Valve surgery

Surgery was scheduled for April 2009, well within the National Institute for Clinical Excellence (NICE) guidelines for time limits. During the months before, family and community activities kept me from dwelling too much on it. But as April approached, life seemed to be contracting in time and space. I kept imagining standing inside a small shadowy room with a low dark ceiling. At that uncertain time the image was more comforting than disturbing. But real comfort came from the support of family members and good friends.

"From the start I was impressed by the high level of care, the spotless facility, up-to-date equipment, and even the tasty food"

Early on April 15th I said goodbye to Richard at our family doorstep in Cornwall and climbed into the Brompton Hospital van for the six hour drive to London, amazingly at no cost to us. Once admitted to the hospital, I was assigned a bed in the Princess Alexandra Ward, given a thorough evaluation that included a routine test for MRSA, followed by tests to assess the heart condition. From the start I was impressed by the high level of care, the spotless facility, up-to-date equipment, and even the tasty food. Meticulous hygiene practices were consistently maintained. All staff washed their hands at the sink in our ward room before and after medical procedures, and an energetic support staff swept the ward rooms and halls twice a day.

Shortly after arriving I met with Mr Moat, a hearty middle-aged man whose warm manner and sensitive, expressive hands gave me assurance. He explained the complex, delicate procedure he would follow to repair the valve, using traditional surgical procedures.

Surgery was scheduled for Tuesday morning. Its reality loomed when I was asked to sign a consent agreement that spelled out possible risks of stroke or death. Standing in the hospital shower early that Tuesday morning while scrubbing down with special anti-bacterial soap, I imagined the long line that would soon run down my chest and was glad to be beyond the age when appearances mattered.

After being given medication to relax I was wheeled into oblivion in the operation theatre. Knowing the possibility of complications, Richard was relieved to hear by late afternoon that I was sleeping peacefully in the Intensive Care Unit.

Recovery

The first few days after surgery went by in a blur. Unable to keep any food down and dependent on the nurses for basic needs, I did little but sleep. I had braced myself for pain but experienced almost none, thanks in good part to modern surgical techniques.

Morphine was available at the push of a button but I don’t remember using it often and felt less groggy without it. I was fortunate compared with other patients who experienced considerable discomfort.

Five other women and I shared a room in the Princess Alexandra ward. We were all there for valve repair or replacement surgery, which created a bond between us as we recovered, gave support, shared symptoms and stories. We were careful not to tell too many jokes since it hurt to laugh or cough. Pressing a rolled towel to the chest helped to mute the discomfort. Within days I developed restless leg syndrome, a common condition after valve surgery. Finding it difficult to lie still without twitching legs, and sometimes arms, I spent many night hours walking the corridors, grateful to sympathetic nurses and room mates for putting up with my restlessness.

"At first I could barely lift a standard-sized book, my handwriting was illegible, and opening doors was a feat"

Having open-chest surgery profoundly affected my whole body. At first I could barely lift a standard-sized book, my handwriting was illegible, and opening doors was a feat. The eyes were especially affected. Each time mine closed bright, detailed images appeared on the retina, most often of red liquid flowing through shifting channels, as if the brain had looked inside the heart/lung machine during surgery. At night time the images sometimes appeared with my eyes wide open. Late one evening I was almost convinced bright fireworks were sparking across the London skyline. Ward mates reported similar phenomena, apparently a common effect of surgery caused by the morphine and anaesthesia. Fascinating as they were, it was a relief when the images finally faded.

For the first week after surgery we all bristled with wires, drainage tubes and protruding bags that were uncomfortable and a nuisance to carry around. Initially I was hooked up to a terminal on the wall that monitored heart rate and blood pressure, then later given an ingenuous portable telemetry box that could be tucked handily inside a bathrobe pocket. The box contained wires attached to pads stuck to my chest that transmitted vital signs on the ward’s central computer. Best of all, the box and the surgical chest bandage could be removed for showering. The first shower that I took free of extra appendages was blissful.

My chest scar was bright red but narrower than expected. Looking down I saw thin ankles again after months of water retention caused by the valve regurgitation. About a week after surgery another echocardiogram was administered. The mitral valve was now a neat cone as in the Internet illustrations and made a healthy crisp sound instead of a swooshing noise.

By the eighth day after surgery, the tubes & wires had been removed and bandages were off. Though still weak, I was anxious to go home, and was discharged the following day.

Going home

I was given medications to last two weeks, and a phone number to ring for the 24 hour cardiac nurse. I was also supplied with booklets on how to care for the scar and advice on activities to avoid during the first few weeks.

Before being discharged a physiotherapist made sure that I could walk easily and handle stairs. In the weeks that followed I rang the nurse with questions two or three times. It was reassuring to talk to someone knowledgeable, especially to find out if symptoms were normal or needed attention.

Since walking is critical to strengthen the heart valves and pump after surgery I was encouraged to slowly build up to two or three miles a day.

A spell of atrial fibrillation set back recovery by a couple of weeks, but soon after I was out on the paths around our village for an hour or so a day. I couldn’t manage inclines but made strides on the level. Exercise was limited to walking since activity above the waist wasn’t allowed for several weeks. This got me out of housework, including any energetic cooking, ironing, or even carrying the groceries. What better excuse to ask for assistance?

Fully recovered

"Now three years later, I’m walking up hills with normal energy and lung power"

Now three years later, I’m walking up hills with normal energy and lung power. I am no longer on any cardiac medication and the scar is barely visible. My brain seems to work better since it’s getting more oxygen; even playing the flute is more rewarding.

I am not the same person as before surgery, being now less patient with conventional behaviour or predictable routines and more willing to take risks. Time has expanded again and I no longer experience the sensation of standing in a low shadowy room. Family and friends are infinitely precious, quarrels of little consequence, and good humour is priceless. I am immensely grateful for being given a new lease of life and feel a bond with anyone who has gone through this experience.

Read our Focus on: Heart valve disease

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