WHEN Melissa Butler, 46, found herself exhausted by exercise, she thought it meant she was unfit.
Little did she know it was the sign of a life-threatening condition that she caught in the nick of time.
Melissa, who lives in Worchester Park, Surrey, was diagnosed with a rare condition called cardiac sarcoidosis, with no known cause.
It causes an unusual immune response that leads to scarring or clumps of swollen tissue in the heart, interfering with normal functioning.
Melissa is sharing her story ahead of World Heart Day, on September 29.
Some 7.6 million people are living with dangerous heart conditions — including angina, coronary heart disease, arrhythmia, valve disease and heart failure.
But many will have no idea they have a condition, the British Heart Foundation warns.
Its new campaign, Spotlight, is raising awareness of how invisible heart conditions can present themselves — both to those with it, and those around them.
Melissa said: “Sometimes, I wish I had listened to my body when I started having heart symptoms and maybe I wouldn’t have the damage that I do inside my heart. Or be in the situation that I am now.
“I am certainly not your typical heart failure person.”
'I got breathless after a flight of stairs'
Melissa, a digital content creator and travel blogger (MelbTravel) was fit and healthy and loved to go hiking, skiing and being outdoors.
But in 2018, she found that she would become breathless after “five minutes of walking, or just walking up a small set of stairs”.
Her heart would pound and her chest became wheezy after she did anything physical, and she found herself so fatigued she would “want to sleep in the middle of the day without any real reason”.
Melissa told Sun Health: “I thought my symptoms were caused by not exercising enough, so I started going to the gym even more and doing more classes and swimming.
“My husband said I should go to the doctor and instead I did the opposite. Not realising I was doing more damage to myself.
“I couldn’t even walk 50 meters to the end of our street without stopping short of breath.”
'Doctors couldn't believe it'
One day, after around six months of experiencing symptoms, Melissa went for a walk to the supermarket.
She said: “As I got closer, my chest got heavier like it had been before and thought I just needed to slow down and let my heart slow down.
“It didn’t and I was sweating really badly and needed to throw up. I remember someone in the restroom asking me if I was OK and I said that I was fine.
“I knew something was wrong and thought that I was having a heart attack but I was conscious so thought I must be OK.”
Melissa called her husband who warned her to go to a doctor, and remarkably, she made it there despite her condition.
Upon finding Melissa's heart rate was 230bpm against a normal of 60-100, Melissa was immediately taken to hospital by ambulance.
She said: “The doctor couldn’t believe I got myself there and I was still conscious.
"[At hospital] they were going to shock me back into place but my heart had slowed down.
“Even though my heart rate dropped I was admitted into ICU for the night as something was not right.”
Melissa was in Australia at the time, where she is originally from.
Back home in England two weeks later, tests were run to figure out what was happening with Melissa’s heart.
She said: “They took me in a room and said, 'We are unsure have to tell you this but we think you might have had a heart attack in your sleep maybe a few years ago and we are unsure how you have not died as your heart is not functioning correctly’.
“‘You are so lucky, you haven’t passed away while you were sleeping and we can’t let you leave the hospital as it’s too dangerous for you’.
“I instantly went into shock as I couldn’t believe what I was hearing, I thought they were joking."
Melissa was then transferred to St George’s Hospital, known as one of the best places in the UK for heart matters. Within three days she got her diagnosis.
Sarcoidosis is an inflammatory condition that can affect multiple organs, in Melissa’s case, the heart.
In cardiac sarcoidosis, tiny collections of immune cells form inflammatory tissue in the heart tissue and can interfere with normal functioning.
Symptoms include all those Melissa experienced - shortness of breath, palpitations, fatigue, chest pain, irregular heartbeat, swelling of the legs and fainting.
I ended up getting delayed PTSD, as I had not dealt with being diagnosed.
The cause of sarcoidosis is unknown. It is thought to be an abnormal response of the body’s immune system.
It is known to be a ‘silent killer’ because it may be diagnosed too late, due to the symptoms being non-specific.
“They had no idea how I got it and that it was not genetic,” Melissa said.
“I spent most of my time outdoors, up the mountains skiing and hiking. I like to have a drink or two but I had never smoked or done drugs.”
Melissa was told that, due to the damage in her heart, she would need a pacemaker and ICD (implantable cardioverter-defibrillator) fitted.
The pacemaker helps keep Melissa’s heart beating regularly, while the ICD delivers shocks to the heart when it notices a dangerously irregular beat.
“I had my operation and was released from the hospital on Christmas Day 2018 when I just turned 42 years old,” Melissa said.
Melissa’s life has changed drastically since her terrifying ordeal five years ago.
She’s had four operations, including two to insert electrical devices in her chest, has been rushed to A&E three times, and has spent at least three months in hospital in total.
“Last year when I was in Egypt, I got sick and my ICD shocked my heart back into a regular rhythm,” Melissa said.
“I ended up getting delayed PTSD, as I had not dealt with being diagnosed.
“While I may still look the same to family and friends, l have mentally and physically changed a lot.
“I mean, I have gone from never taking medication to having 20 pills a day.”
Melissa also sleeps with a pacing machine next to her bead which sends heart readings to her hospital daily, and will receive a call if the team are concerned. She also carries a portable heart rate monitor, and needs to attend half a dozen appointments every year.
She said: “I still love being outdoors; skiing and hiking but now everything is done at a much slower pace and I write from a perspective of a heart failure person.
“I have started sharing some of my personal experiences, hoping that l can help others and put a positive spin on all things heart-related.”
I had a heart attack on a bike ride
Neil Chapman, 53, a project manager from Worcester, was on a bike ride in the countryside four years ago when a sudden bout of chest pain came from nowhere.
The married dad-of-two said: “I went out that morning feeling perfectly fine.
“The pain was like a dull ache which gradually got worse over half an hour until I couldn’t breathe.”
Neil called his wife, Christian, who picked him up and drove him to hospital, by which point Neil was struggling to even get words out.
“They suspected it was a heart attack straight away,” Neil said.
“I couldn’t really believe it. I was relatively young, at 49, fit, so I just didn’t think I was a candidate.”
Doctors found that Neil’s cholesterol levels were slightly high.
He said: "I'd had a general fitness check at my workplace and they did say the cholesterol was was a little bit too high and I should try and slightly change my diet.
“I wasn’t overweight before. But because of all the exercise I did, I kind of thought I had a free pass on food and probably ate too much cake."
There was also a family history of heart-related illness. His uncle had had a heart attack at the age of 49 too.
Since the incident, Neil wears a heart monitor during exercise and keeps an eye on saturated fat in the diet, in order to manage his cholesterol.
But generally he hopes the incident that Saturday morning was a "one-off".
Recalling the day, Neil said: “If I hadn’t called my wife then, another 10 minutes I probably would have ended up dead in a ditch!”
SYMPTOMS YOU MUST NOT IGNORE
For Sun Health's heart special, Ruth Goss, senior cardiac nurse at the BHF, reveals the signs you must not ignore.
TAKE A BREATH
Shortness of breath can be a sign of a number of conditions: arrhythmia, valve disease, cardiomyopathy and heart failure.
Ruth says: “It’s a sign that your heart is unhappy because your breathing rate has gone up because your heart is having to work harder.”
It’s one of the key signs of a heart attack, too.
Fatigue that appears despite there being no change in your life is a cause for concern.
Feeling tired most of the time and finding exercise exhausting can be a sign of heart failure or coronary artery disease.
Ruth says: “If you’re noticing that it is getting worse, or you are unable to do your daily activities, go and get that checked out.”
An irregular heartbeat can feel like a fluttering in the chest, palpitations, or as though there are extra beats.
Ruth says: “That can be signs of arrhythmia, but it can also be quite normal, like lots of people have ectopic beats or palpitations and it’s just something that happens.
“But we would recommend seeing your GP and maybe have an ECG to check everything is OK.”
Chest pain needs to be checked out, regardless of whether there are other symptoms, because it is the main sign of a heart attack.
It may feel like discomfort, indigestion, pressure or squeezing, or a heaviness in your chest that just doesn’t feel quite right.
Ruth says: “It can feel quite sudden, and if it doesn’t go away, that’s a red flag.”
The pain can spread to the arms, across the back, and into the jaw or stomach.
Ruth said: “You may also feel sick, sweaty and lightheaded.”
Atherosclerosis, when fatty plaques block the blood vessels, angina and heart disease can also cause chest pain.
And peripheral artery disease, the narrowing or blockage of the vessels between the heart and legs, can cause sore arms and legs.