Editor’s Note: This is a first installment (we hope) in a series about an all-too-real-life medical drama experienced by a former SPM board member and longtime sci-tech journalist Carla Berg-Nelson (aka “Carla B.”). There is much to learn here about being an empowered, engaged, autonomous patient who also benefits from an empowered peer-to-peer community. Please read thoughtfully — e-Patient Dave

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Part one of an ongoing story

Few things arrest your attention like being wheeled feet first on your back through your own front door.

Few things imprint in memory like being told you need a massive medical intervention that could put your whole life on the line.

And few things deplete you as much as the need to speed dial through dozens of complex topics under stress, then muster the mojo to just say no to some pretty powerful people who just want you to say yes.

All that and more happened to me in the course of treating a condition that I did not really have. Such a mistake can produce its own injury and evoke its own trauma. Even if you are not physically harmed, the emotional experience can be its own form of PTSD.

I felt exhausted at the beginning as I absorbed the scope and the stakes, then exhausted again after the fact, once it was clear how much harm could have been done. That is the crux of why it has taken me almost 18 months to start sharing this story of “the heart attack that wasn’t.”

I did not need to celebrate what I had escaped so much as erase the ambient sense of threat I had lived with for months.

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The heart of a much longer tale

“The heart attack that wasn’t” in my title means exactly what it suggests.

A year and a half ago, after a trip to the Emergency Room, I was told I had just had a heart attack that, as it later turned out, I did not actually have.

Next, I was sent to the cath lab to get a cardiac stent that, as it turned out, I did not really need. Then, in lieu of the stent I did not actually get, I was asked to consent to a heart bypass procedure that, as it turned out, had no good reason to be on my decision tree either.

And then to make it all worse, during the hospital stay when this all first emerged, nobody spoke as if there was a choice to be made or any pros and cons to weigh. Every discussion was framed as a “when” not an “if” and all of the haste also implied we dare not waste time.

In retrospect, that last round of hurry-up-and-comply is where I felt the most misled. But, as it also turned out, due to some excellent friends and some fortunate timing, it was only a matter of days before I began to hear a much different take.

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Risky business

Recalling that last lap when the hospital staff were pressing me to plan for a bypass at the soonest date, reminds me of how close I came to a ton of unneeded treatment and risk.

Today I grasp that in a cardiac bypass your chest is cracked from stem to stern and your blood is routed through a heart lung machine for hours, but that was less obvious at the start. Today I get that this massively invasive process is risky enough to do lasting harm to a non-trivial number of patients. And today I have read enough to see that even when patients eventually say they feel fine, it is an arduous recovery in which women in particular may experience painful struggles and lingering side effects.

How to say “hell yes” to all of that unless you think you are risking death? Remembering how close I came still leaves me almost as breathless as the near miss of a speeding bullet.

In short, something of this magnitude should not be undertaken without a lot of good thinking and a lot of good questions addressed to more than one good specialist.

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A much needed personal break

Taken together, the impact of all the near misses above was so unsettling it took awhile to digest, adapt and recalibrate. But here on a February 14 after more than a year, I am finally moved to pick up a pen.

Given this heart-driven holiday arrives in the midst of a heart health awareness month, my need to share finally outweighs my need to repress how scary it felt to hear people speak as if my life was at urgent risk when it wasn’t.

Today, feeling far more healthy, equipped and resilient than I did at the time, I can let my good fortune outweigh the close escape and share the experience with anyone who wishes to hear more about what can go wrong when not enough questions are asked up front.

But let me go back to the start before I get too far ahead of my own story.

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An enigma wrapped in a paradox

One cloudy late summer Sunday, just before lunch, I was in an easy chair looking down at a book on an iPad in my lap. Suddenly, out of the blue, the room began to spin. I looked up and out the window to make the spinning stop, but it didn’t. Then I tried to rise, but my knees were so weak, I collapsed back into the chair.

My husband was a few feet away in the kitchen. He stopped cooking and stood nearby concerned. I reported what I was feeling and said if it didn’t end fast, he should call 911. Five minutes later he did, while I sat in the chair waiting for the room to stop turning.

Oddly enough, beyond the dizziness and wobbly knees, I felt basically fine and surprisingly calm. It was a paradoxical set of feelings around an enimagmatic set of symptoms.

I had read enough healthy heart updates over the years to know that oddball ambiguous symptoms can sometimes signal a heart attack, especially in women. I was also aware that ladies may lack the classic cardiac signs such as chest pain. So I already knew that any female needs to think about cardiac risk as soon as any very strange symptoms appear, especially if they intensify.

The 911 dispatcher my husband reached clearly knew the same things. They sent out an ambulance right away, the crew wheeled in, quickly assessed, then wheeled me out and sped towards town.

During the quick EMT checklist, I shared that each of my parents had died (decades apart) within hours of their first heart attack. Given that fact, I don’t fault any first responders for being extra cautious with me when several things turned strange so quickly.

But given what I know today, it also seems that once I checked in, my hospital team acquired tunnel vision almost as rapidly. Upon hearing about that history, each new clinician in line just assumed that I must be having a heart attack.

This tunnel vision did not permit any alternate theories, even if a few skilled questions asked early might have revealed the cause of the sudden vertigo. Combining that fact with my lack of chest pain and my normal ECG might have led to a much different conclusion far faster.

But during my hospital stay, the clinical staff resolved every ambiguity with a cardiac hypothesis. This left only one conclusion on deck, which then became self-fulfilling.

The rest of the story took months to clarify with multiple visits and tests. That longer story has so many plot twists that it may take many more tellings from many more angles to sift all the lessons worth sharing. So let us consider this, my first share of the story, as the “campfire” version, collapsing the whole to its principal high points before later installments provide more detail..

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An SPM subplot

I can’t begin sharing this tale anywhere else but here on the blog of #S4PM because being part of this group made a pivotal, positive difference in how the whole the story played out.

The non-profit Society for Participatory Medicine (SPM or #S4PM) consists of a lively circle of friendly allies who wish to improve the culture of healthcare and increase patient welfare.

That mission appeals to a very broad base and this breadth creates a powerful “peer to peer” network for SPM members. We are not just patients and caregivers who range from newbie to expert, nor are we are only doctors, nurses and EMTs, nor are we solely focused on research by PhDs, or are we mostly about the business of making and selling things inside the healthcare industry. SPM represents all the above and more, and as I quickly learned during this episode, there are also the times when we are more than the sum of our parts.

Without the diversity of SPM and its tribe I might not have ever asked the whole range of questions that framed the rest of this story, much less met the two experts whose direct assistance made an enormous difference.

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When circles converge on a point

As soon as I shared my ED visits and my diagnosis doubts online, overlapping circles within SPM quickly led to two helpful experts who remain friends and allies today. Each appeared just when I needed them most, and each offered just the kind of context and counterpoint that I really needed to hear.

My first key ally during this time is an attorney and a patient advocate in cardiac care. A second ally, her friend and colleague from work on journals and committees, is a nationally known cardiologist from an Ivy League university. Once we connected directly, this man was so cheerful, empathic and informative I quickly came to think of him as “Dr. Mensch.”

The encouragement of these experts together with other interested friends at SPM helped me to stick with my instincts and be a constructively non-compliant patient, to just say no to some bigwigs suggesting big interventions, and to keep seeking input until I felt equipped to choose.

Thus, despite calls from a hovering clinical team eager to schedule surgery, once I was home, I did not rush to schedule anything more than second and third opinions, or to order anything more than a clutch of papers to read.

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As the wheels turned

Shortly after seeing my data and speaking at length on the phone, “Dr. Mensch” was the first to say “I am not so sure that you even had a heart attack.” I still bless him for delivering my first and largest lifeline.

Hearing that within days of being sent home with a stack of brochures about bypass surgery was an enormous relief.

It said that the conclusions were not all foregone.

But once back home, I covered my bases too. In case the first team was correct, I began speeding through links about cardiac bypass surgery (CABG). A major plot point to me was wondering why the much less invasive keyhole kind of surgery is not done much more often than the chest-cracking option, especially in women. (This will be a topic all of its own in a future chapter of this story. See also my footnote.)

Needless to say the medical team who first diagnosed and advised did not like hearing the questions that Dr. M. later raised. Nor did my PCP enjoy explaining to them why I was seeking added opinions before I signed on for anything. But to her credit, Dr. PCP relayed my stance to them with only a few sighs aimed at me.

At no point did any clinician imply the decision was not entirely mine. They simply acted as if there was only one intelligent choice to make, then tried to hide the rolling of eyes if I looked unconvinced.

This ‘right to rule’ and ‘of course I am right’ aura was especially visible in the bigwig MDs I had seen striding the halls doing rounds with coveys of eager new docs in tow. I was left with the distinct impression these bigwig types were not accustomed to having their judgment questioned at all.

It all stood in stark contrast to the graceful humor and humility I was soon to observe at close range once I met “Dr. Mensch.” Amidst all their extra entitlement, his presence was extra pivotal, even at a distance.

Anyone seeing his name could do a quick search on Google to see how much he was respected by peers in cardiology. One quote in a well-known magazine even called him especially powerful. So it cast a long shadow in every direction when he was asking questions and I have no doubt it also helped my PCP be more supportive of my self-helping DIY style.

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Two cardiac wings

One of the larger new lightbulbs handed to me by Dr. M. was about a longstanding division between two wings of cardiology.

In one wing of the discipline are the “interventionists.” They are cardiac specialists who tip towards bio-mechanical modes, like surgery, and devices, like stents and ICDs. In a parallel wing which often takes an opposite stance, are the “non-interventionists” who prefer to first adjust lifestyle, via diet, exercise, stress reduction and medication.

Interesting, I thought, how rarely this distinction is mentioned in articles about healthy hearts or aging. It felt like I had years of catching up to do.

Fortunately, I could also hear Dr. M. echoing in my ear when he said there was no urgency. “If anyone makes it sound like you will die if you don’t decide right away, don’t believe it, ” he said calmly in one of our talks.

Given the hurry-up calls I was still getting from the hospital team, it helped a great deal to hear that too.

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DIY Double-Checking

Once home from my two night hospital stay, I was sidetracked for days cross-checking the many meds I had been handed and told to take.

It was disconcerting to quickly see how many prescriptions seemed to be in conflict with each other despite the team of want-to-be helpful young interns who had been assigned to double-check the list. But where they were pleased to reduce the tally from 15 meds down to a dozen, I was aghast at the thought of consuming so many new substances all at once, each potentially interacting. If I started to feel very odd or unwell how could anyone possibly guess what was causing it?

I needed to know why so many new meds all at once and what they were for, then to pare it back as far as possible before piling on more and more.

After ruling out side effects I knew I couldn’t tolerate, nixing meds that were not supposed to mix and axing a couple that didn’t play well with what I already took, I winnowed it down to three, then ran it by Dr. M. and my PCP. Each thought my lean regime sounded fine so long as I stayed symptom free. (This topic is also worth a future installment of its own.)

Today, I have a new PCP, my cardiac pills are down to one Rx, and I can’t begin to recall anymore what all those other dang pills were for. What I can say is that not taking them has had no apparent impact at all.

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An eventual happy ending

Given the “not a heart attack” evidence that was still to surface some weeks downstream, all I can say at this point in the telling is “thank heavens” again, not only for “Dr.M.” but also for “Dr. G.”

My PCP also put me in touch with a local specialist who resembled Dr.M, a wise-sounding cardiac surgeon from India who fit all the stereotypes of Ghandi-like calm. He was the second MD to look at my data and express doubt about a heart attack. I especially enjoyed passing that on to Dr. M.

By Thanksgiving, as chance would have it, four local specialists had all seen my records. All agreed I had probably not had a heart attack and said surgery was irrelevant until and unless things changed quite a bit.

The final bit of confirming evidence came after Christmas when I had a nuclear stress test at the request of another local (non-interventionist) specialist. Nobody still on the case was surprised when that more detailed radiography confirmed “no evidence of ischemia or infarct.”

Thus my healthy-looking ECG was accurate, my lack of chest pain was significant, and none of my summer symptoms were about a heart event. Meanwhile the vertigo turned out to be an oddball recurrence of a long dormant and almost forgotten vestibular quirk that can apparently be triggered in me by allergies.

This doesn’t mean I am home free. My unexpected trip to the cardiac cath lab did not yield a stent, but it did reveal some data we would not have otherwise seen. Now my doctors and I also know about some emerging blockages too, one of them in the same vessel that killed my mother when she was another two decades older than I am today.

So this isn’t the end of my cardiac story, but the beginning.

And now that I am sharing it, thank you for reading and please stay tuned.

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Footnotes:

1. For a recent portrayal of keyhole bypass surgery in women, try to watch what happened during the heart attack of the fictional “Dr. Miranda Bailey” on TV (Grey’s Anatomy, ABC, Thurs., February 1, 2018).

2. Heart images courtesy of Pixabay.com (royalty free, open source art)