“You’re young, healthy, thin – and nothing’s wrong with your heart”

Elissa is a busy 32-year old professional violinist, a mother of three, and a violin teacher who also teaches part-time at her local university. Last year, the northern Utah resident began experiencing unusual symptoms that seemed to be heart-related: chest pain, shortness of breath and crushing fatigue.

These symptoms were so alarming that she knew she needed to seek medical help. See if you can spot the red flag as she tells her story . . .

“At the E.R., I was given a prescription for heartburn medication. I was already taking beta blockers for my high blood pressure (left over from a recent hypertensive pregnancy). Over the next few months, I had several more heart tests, was told repeatedly the issue was NOT my heart, that I had anxiety or heartburn, that I should take a few weeks off from parenting, that it was nice to see someone not 100 pounds overweight who could complete a treadmill stress test, that I was young and healthy and thin and I should be glad nothing was wrong with my heart.”

When Elissa’s own primary care doctor told her that he thought her symptoms were “psychosomatic”, she gave up. She explained that, after this particular comment, she tried to just live her life without much hope of feeling better, yet continued to be dogged daily by that ongoing chest pain, shortness of breath and feeling absolutely exhausted.

But one day, she finally decided to “grab the bull by the horns” and consulted an electrophysiologist (or EP, a cardiologist with specialized training in heart rhythm disorders). Although her previous cardiac tests had shown nothing significant, the new cardiologist suspected that her symptoms might be due to a fast heart rate condition called SVT (Supraventricular Tachycardia) and recommended an EP study to confirm or rule out that diagnosis. For most people who have SVT, the heart still works normally to pump blood throughout the body. They may present with no symptoms at all, or with serious symptoms and poor quality of life as Elissa experienced.(1) NOTE: for help in translating some of the cardiology terms in this post, please visit my patient-friendly, jargon-free glossary.

The new EP study revealed a problem called AVNRT (Atrioventricular Nodal Re-entry Tachycardia).* It turns out that AVNRT is one of the most common types of SVT, most often seen in people in their twenties and thirties, and more common in women than in men. It happens when there’s an electrical short circuit in the centre of the heart.

Elissa successfully underwent a procedure called a cardiac ablation, and her distressing symptoms disappeared.

Regular Heart Sisters readers might have already picked up the same red flag that I did when reading Elissa’s story. For example, she wrote, “. . . high blood pressure left over from a recent hypertensive pregnancy.”

When I asked Elissa about her hypertensive pregnancy, this story suddenly became even more intriguing after she replied:

“I was diagnosed with HELLP syndrome when I was pregnant with my first child, who was born just shy of 36 weeks. My next two pregnancies were induced at 39 and 38 weeks respectively because of my high blood pressure.”

According to the Preeclampsia Foundation, Elissa’s condition called HELLP syndrome (Hemolysis. Elevated Liver enzymes. Low Platelet count) is a life-threatening pregnancy complication that’s considered to be a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. The global mortality rate of HELLP syndrome has been reported to be as high as 25%. Elissa added:

“When this whole chest pain thing started, I already knew about and mentioned to my primary doc the relationship between preeclampsia and future cardiac issues. I was very surprised when he resounded with ‘I’ve never heard of that.’ My pregnancy history was summarily dismissed by every single healthcare provider I saw as an unimportant detail.”

Consider carefully Elissa’s last statement: every physician she saw about her cardiac symptoms dismissed her history of pregnancy complications as an “unimportant detail.”

But by now, we know that pregnancy has been called the “ultimate cardiac stress test”. We know that pregnancy complications can more than double a woman’s risk of developing future heart disease. We also know that other pregnancy complications like preeclampsia (as I experienced during my first pregnancy), gestational diabetes, placental abruption, and having a preterm or a full term/low birth weight baby are all associated with higher cardiovascular disease risk. See also: Pregnancy Complications Strongly Linked to Heart Disease.

When the American Heart Association officially added pregnancy complications to its list of cardiovascular disease prevention guidelines in 2014, they wrote:

“Essentially, having pregnancy complications can now be considered equivalent to having failed a stress test.”

I was invited to speak at a 2014 Toronto medical conference on preeclampsia, where I had the opportunity to hear another speaker, Dr. Eric Steegers, a researcher from the Netherlands. He described pregnancy complications as “a short-term problem for the OB-GYN, but a longterm problem for the cardiologist”.

But because most women with the pregnancy complications listed above have rarely been considered at high risk for cardiovascular disease, he warned that current cardiac treatment guidelines are not tailored to this group of young women.

Elissa turned out to be a success story, but it took her own sleuthing to arrive at an appropriate diagnosis and treatment. As I now tell my readers and my women’s heart health presentation audiences, we really do have to become our own best heart health advocates.

And as I told Elissa:

“Your only job now is to become the world expert in your diagnosis.”

And by the way, I’d like to have a wee chat with the physician who advised Elissa that all she needed to do was to “take a few weeks off from parenting.” I think I’m going to go embroider that advice on a pillow . . .

♥

*Here’s more about AV Nodal Re-entry Tachycardia (AVNRT) from the Emergency Medicine site, Life in The Fast Lane:

AVNRT is the commonest cause of palpitations in patients with structurally normal hearts.
AVNRT is typically paroxysmal and may occur spontaneously or because of exertion, caffeine, alcohol or certain drugs (e.g. salbutamol or amphetamines).
It is more common in women than men (about 75% of cases occurring in women) and occurs in young and healthy patients as well as those suffering chronic heart disease.
Patients will typically complain of the sudden onset of rapid, regular palpitations. The patient may experience a brief fall in blood pressure that causes a feeling of lightheadness or even fainting.
The patient may experience chest pain similar to angina (a tight band around the chest radiating to the left arm or left jaw).
The patient may complain of shortness of breath or anxiety.
The fast heart rate of AVNRT typically ranges between 140-280 bpm and is regular in nature. It may stop spontaneously (and abruptly) or continue indefinitely until medical treatment is sought.

Elissa’s photo credit: Jillian Butler Photography

(1) Camm AJ; Cardiac Arrhythmias–Trials and Tribulations. Lancet. 2012 Oct 27;380(9852):1448-51.

PLEASE NOTE: I am not a physician so cannot advise you specifically on any symptoms you may be currently experiencing. If you’re having cardiac symptoms that feel unusual for you, do not leave a comment here listing them for me. Instead, consult your physician.

Q: Have you experienced a cardiac diagnosis that was ultimately linked to a pregnancy complication?

NOTE FROM CAROLYN: I wrote much more about how pregnancy complications increase our risk for developing heart disease in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price).

Carolyn Thomas says:

December 21, 2016 at 5:01 pm

Thanks for your comment here – like you, I too know how it feels to be first told the incorrect diagnosis as well as the correct. Correct feels better! As I now like to tell the women in my heart health presentation audiences: “You know your body! You KNOW when something is just not right!” It can be hard once you’re misdiagnosed to continue to be persistent after somebody with the letters M.D. after his/her name has told you (as in Elissa’s case, blaming symptoms on just anxiety, heartburn or stress) that it’s NOT your heart. But we need to be as persistent as we would be if these symptoms were happening to our daughters, or our sisters or our mothers (in which case we’d be screaming blue murder for immediate help!)

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While I was not so young, I too began to have a rapid heart beat that seemed never to be caught on an EKG. My female cardiac specialist said I should see a psychiatrist! I asked for a referral, however, did not get one.

Finally due to all my complaining, she said if “it” happens during office hours I should come into her office when these episodes start. I did exactly that and 5 minutes in her office resulted in being rushed to the ER and overnight admission.

I was diagnosed with proximal Atrial Fibrillation (AFIB) 5 years ago. I use medications that help control the episodes.
One must be diligent when experiencing any kind of symptoms. Not the first time in my life that “it was all in my mind”!

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Carolyn Thomas says:

December 18, 2016 at 9:49 am

Thanks Eileen – it’s distressing that you had to keep “complaining” simply to get your doc to take your symptoms seriously, which can happen when doctors make decisions solely on a “normal” cardiac test result and not on what the patient right in front of your nose is telling you.

Also interesting that her solution was to recommend that if “it” happened again (but only during office hours of course!), you were then allowed to return to her. Clear sign of having already decided that yours was simply a psychological problem… Hope you’re doing well now…

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What an interesting story and I’m glad Elissa did her own investigations and the cause of her heart issue was found.

It’s too bad that so many physicians are quick to dismiss. There are many terrific doctors that are not dismissive; those are the ones that one sometimes has to hunt for.

I too failed the pregnancy stress test at aged 27. I have heart disease now that began as high degree AV block in my mid 30’s, etc.

A few weeks ago I had an appointment at a top US teaching hospital and was first interviewed and examined by the Neuromuscular Fellow. This doctor was very capable, warm and caring and I believe we developed a good rapport. After I was examined, the Neuromuscular Fellow left the room and a few minutes later the Fellow walked in with the Neuromuscular Attending Physician. The dynamics were–of course–of teacher/student. The problem I noticed was the Attending Physician had an unnecessarily brusque tone and was dismissive of a statement I made. The Attending shouted out numbers to the Fellow that correlated with the same exam that the Attending Physician was now repeating on me. They didn’t need to be shouted, nor rapidly so. The vibes in the room were bad now and there was no rapport at all.

My point is that I think dismissiveness is taught.

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Carolyn Thomas says:

December 18, 2016 at 6:59 am

Hello Mary – thanks for sharing that example. “Shouting”? What the hell? Sadly, I think you’re on to something: “dismissiveness is taught” – and that needs to stop.

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