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Herb Greenberg's avatar

I'm speaking as a patient whose consulting physician at the end was Eric Topol, but also as decades-long financial journalist and many would say is known for having a skeptic view on things – so please don't dismiss me!

I have been intrigued with the early trial, but mostly because I was in the watchful/waiting camp with my aortic insufficiency for more than 40 years. And I viewed myself as asymptomatic. (Tho as most asymptomatics will likely tell you, post-surgery they realize they probably were! I exercised regularly and over the decades saw top-notch cardiologists as I moved for my job from coast-to-coast and in between.

But it was my original diagnosis by a member of one of the most prestigious pioneering heart-related families in St. Paul that woke me up to what I'm about to say...

His view when he heard the murmur was, "It's nothing." This was in the early days of HMOs and hearing I had a "murmur" got my attention. After all, it was MY heart and I was learning for the first time in my 20s that it wasn't perfect!

I had no idea what a murmur was, but demanded an ultrasound - and had to fight to get it. From that point on, I watched it annually, with physicians showing varying degrees of interest and concern as I moved from city to city - Chicago, New York, San Francisco, where I was always seen at the top institutions.

As medicine progressed, I received CTs, MRIs - never a TEE, interestingly enough. Every year for a decade one cardiologist did a stress echo. Why a stress echo annually? I don't know. I read and researched to the point that I'm sure my regular cardiologist, in the final few years until surgery, dreaded having to see me and having me ask SO many questions.

All imaging over the past two decades suggested I had a "probable bicuspid valve" with increasingly severe stenosis. This includes imaging in Cleveland pre-surgery.

It wasn't until about six month pre-surgery that I started to have symptoms (it took a suprisingly long time to recovery my breath after walking up a steep hill. On one hand I thought nothing of it, but the more it happened, the more I hoped it wasn't what it turned out to be). By that point, because of also having an aortic aneurism that was edging toward the 5.0 mark, I was on the every 3-month scan plan.

This is where things get interesting...

My cardiologist here in San Diego suggested coming back in yet another three months, but my body suggested I get a second opinion. Thanks to Eric's intro, I had been going back/forth over the years with Lars Svensson at Cleveland. Each year, after reviewing the images, he would suggest I continue to watch it. This time, after seeing the results, he suggested I fly in for further tests and consultations. Within I month I did and his conclusion after reviewing the results, when I suggest we wait maybe eight months until after a grandchild was born was: "I would do this soon." Not because of the aneurism, which was hovering at 4.9, but the valve combined with my symptoms.

A month later I had the full slice-and-dice. I was in good health and the surgery and recovery were surprisingly fantastic.

But here's the kicker: I was 67. When he opened me up, he found I had a unicuspid valve, but that my heart had expanded to an athlete's heart to compensate, which is why I was asymptomatic well beyond when most unicuspid valves would have been replaced. My point: Despite all the great imaging, perhaps because of the way I'm built, they couldn't see that until they got inside.

They also did a bypass of my marginal obtuse artery, but the overall consensus is that it was my valve that was causing my breathlessness after walking up hills, not the blockage.

Moral of my story: I'm among those who watched it like a hawk and educated myself, keeping my fingers crossed at every echo that the measurements of my left ventricle would be stable. I don't believe most people do, and my bigger concern is physicians who discover murmurs and tell the patient, "Don't worry about it," when in the very least they need to get a baseline. In fact, it wasn't until about seven years before surgery, after moving back to San Diego from Connecticut, where I saw a Yale cardioligst, that a doctor even suggested I get a solid baseline on the size of my aorta... which is when we realized IT needed to be watched. That should have been SOP on any bicuspid patient, but nobody ever mentioned it.

I was skeptical of the early trials for the reason you were. I'm a huge fan of Edwards and I and I genuinely think heart failure is a big issue that can be prevented. I'm just dubious that most internists/family med doctors will make the referrals to a cardiologist on discovering a "murmur." And if they do, that most patients will realize WHY they should monitor it going forward. After all, you don't feel aortic insufficiency if it's minor or even moderate – and if like me, you feel (or felt) fine. I simply don't think the risk of heart failure or other ramifications are communicated enough to valve patients.

Again, I speak as a non-med professional but as someone with a keen and very personal interest in the topic.

Thanks for reading, assuming you got this far!

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Joseph Marine, MD's avatar

Excellent counterpoint to the recent JAMA Viewpoint paper. The underlying problem is the proliferation of confusing combined primary endpoints that seem designed to increase chances of getting to a "positive" trial rather than revealing unbiased medical truth. EARLY TAVR was particularly egregious - defining TAVR as a therapeutic procedure in the intervention group and an adverse event in the control arm. Subsets of hospitalizations should not be accepted as an endpoint, as they are clearly biased toward intervention. What good is an intervention that reduces CV or heart failure hospitalization but increases non-CV/HF hospitalization? More in the CV community need to call out this problem, or it will continue.

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