I Shouldn’t Have Heart Disease. Why Me?

Before the weirdness in my chest began, it never occurred to me that I could have heart disease. Sure, in the vague future perhaps, but not anytime soon. I’m physically active, eat a lot of fruits and vegetables, I don’t eat animal fats, I’m a woman under the age of 40.

(I eat a lot of coconut fat and, until recently, plenty of sodium too, but I have reformed my sodium-eating ways, and I’m not sure coconut fat is a problem, I’m a good girl now).

My chest sensations made me seek more information, which led me to the books The Exquisite Machine by Sian Harding and State of the Heart by Haider Warraich.

Both books confirm that heart disease can happen to anyone with a heart.

Yes, I’m at ‘lower risk’ than many other people. It’s just that—lower risk. Not zero risk.

Take for example, that I am a woman—or rather, I have XX chromosomes. Medical scientists once believed that a) women were at less risk of heart disease and b) it was because of estrogen. The truth turns out to be far weirder.

It’s true that heart diseases are more common in people with XY chromosomes and post-menopause people with XX chromosomes than in people who menstruate. But it’s not the estrogen. According to Harding, trans men who have been on testosterone therapy long-term have the same risk as cis women of the same age, and trans women on estrogen therapy have the same risk of heart disease as cis men.

Takotsubo syndrome is a heart disease which is far more common in people with XX chromosomes. Cardiologists in Japan were the first to identify the condition—only in 1990. Even today, many cardiologists are unaware of Takotsubo and misdiagnose it. It took so long to identify as a distinct heart condition because, well, it was easier to dismiss women’s complaints of chest pain and shortness of breath, especially if their coronary arteries were clear (i.e. no heart attack). The Japanese cardiologists wouldn’t have believed the women if they hadn’t seen something strange in the chest images—images captured by technology which had only just become widely available in the 1980s. Before technological advances, cardiologists probably assumed that women with what we now call Takotsubo syndrome were just making stuff up.

In the United States, women are 2-3 times more likely to die after a heart attack—but only if male cardiologists treat them. Female cardiologists have the same survival rates after heart attacks for both male and female patients. On average, male cardiologists treat heart problems in male patients quicker (and even minutes matter for treating heart attack victims) and stick to recommended practices better than they do for female patients. Harding cites this study as evidence.

The vast majority of cardiologists in the United States are male. When I get a cardiological exam, it will probably be with a male cardiologist since there are so few female cardiologists in my area.

So, it’s not so simple as ‘women under 40 have less risk of heart disease than men or women over 40.’

A silent ‘risk factor’ is genetics. Harding says about 1 in 500 people has a genetic disease called ‘hypertrophic cardiomyopathy.’ Sometimes it’s so mild that a person can live a long life without noticing the disease. Sometimes children with this disease seem entirely healthy until, one night, as they sleep, their hearts stop beating. Harding has talked to parents who found their children dead in the morning.

A thorough cardiological exam can catch this disease before it turns deadly, and a genetic screen can sometimes catch it too. Preventive treatments (and avoiding vigorous exercise) reduce the risk of death. Most people (including me) have never had this checked.

Many more genetic conditions cause heart defects, yet we understand them even less.

Let’s set aside talk of risk factors.

Warraich says:

A cancer diagnosis activates a patient’s support group, their friend and family, or even strangers on the internet responding to a Kickstarter funding campaign. At the same time, though, too many times I have seen patients with heart disease suffer by themselves. “People associate heart disease with a lifestyle choice,” said Kati, a view shared by many, “but few think of cancer the same way.” Many also think of heart disease more as a reflection of the aging process, akin to a car just breaking down over time, rather than something that can be averted and that could occur through no fault of the person who has it.

That’s it—we blame heart disease victims for their illness. At the beginning of this post, I said, “I have reformed my sodium-eating ways, I’m a good girl now.” I’m not immune to the cultural conditioning which attributes heart disease to ‘lifestyle choices’ and discipline/morality rather than bad luck.

Both books report that far more money is put into cancer research than cardiovascular research per death caused (Warraich says ten times more research money goes to cancer than cardiovascular disease per death).

Harding has grown new human heart tissue in her lab. She can do it from a skin cell sample. So why aren’t we replacing dead heart tissue with new tissue? One, it takes months to grow and mature heart tissue in the lab, and many patients can’t wait that long (or would need to be connected to life support for months while they wait). Two, if the patient has a genetic heart defect, and the tissue is grown from the patient’s genes, the new tissue will have the same defect. Three, ready-made heart tissue kept in storage until a patient needed it wouldn’t be a genetic match, and the immune system would attack it, just as the immune system attacks organ transplants without immunosuppression. Four, the lab-grown tissue beats to its own rhythm instead of syncing with the existing heart, thus it causes dangerous irregularities in the heart beat. These problems might be solved with further research: they might create a universal donor line for heart tissue which no immune system would reject, or they may figure out how to make new and old heart tissue beat to the same rhythm, or they find a way to grow heart tissue faster. Harding says the greatest obstacle is lack of funding.

Yes, lifestyle choices matter—if I didn’t believe that, I wouldn’t be on my low-sodium diet now—but they only change the odds. They don’t guarantee good heart health.

Warraich treated a woman who had been healthy until an ordinary viral infection gave her a runny nose (this was before the covid-19 pandemic) then ravaged her heart. Her heart was so damaged that she had to live in a hospital for months, connected to machines which kept her alive, until she got a heart transplant. Which virus? Warraich doesn’t say, but it could’ve been any respiratory virus—rsv, influenza, the common cold.

That’s right, even the common cold can break your heart.

A virus can ruin even the healthiest of hearts. Vaccines can too.

This experience has humbled me. I know more about how strange and scary heart disease can be—and yes, sometimes it merits as much alarm as cancer.

I will shed my prejudices that heart disease is a ‘lifestyle disease’ or an ‘inevitable’ part of aging. Much can be done to deal with heart disease where there is a will.

Heart disease happened to me. It can happen again—and be worse.

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