From the Heart

I have a bicuspid aortic valve, a congenital condition which exists in up to 2% of the general population:

Here is my actual valve as viewed using a transesophageal echocardiogram (TEE):


ct-valve-top-still1

Click here to see video of my valve (looking outside in).*

If you watch the video a few times, you will see how two of my three leaflets are fused together, and don’t close entirely.  This allows blood to flow back into the chamber as the heart is trying to pump it out, a dynamic known as aortic regurgitation, or aortic insufficiency (AI).  My AI isn’t severe enough warrant a valve replacement now, and the hope is that through management** and vigilance it will never need to.***  If at some point I do need a replacement, it’s better to wait until just before I “really need it” (which is a judgment call) because as common as valve replacements are, any heart procedure carries risk of death.  Plus the technology and procedures get better and better over time.

For instance, currently they have to open you up to do a valve replacement, but there are clinical trials going on right now to do the replacement endoscopically through your veins(!)  Ultimately, I think we’ll be able to grow new valves and hearts from our own cells, either in the body itself or externally, via regenerative medicine:

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Lest you think this is a far away pipe-dream, take note of the regenerated finger in that video: bone, vasculature, nerves, flesh, nail — everything was regrown, more or less intact in a matter of weeks.  How far off can internal body parts be?

What is actually more amazing to me is not that heart disease (still the #1 killer in the world) is rapidly becoming a solvable problem from a medical standpoint, but rather that we have technology now that could (a) save millions of actual lives, (b) get millions of people off of cholesterol drugs (and stop unwarranted worrying about cholesterol for some), and (c) save us billions of dollars a year as a society.  What’s not surprising to me is the difficulty with which the medical-pharmacological-insurance system has in embracing this.

What I’m talking about is imaging technology, like the CT and echo scans that I received during my diagnosis process.  Unrelated to my bicuspid valve, my cardiologist showed me a virtual fly-through of my coronary arteries.  He went through all of them with a keen eye for signs of disease and plaque buildup, but I only watched a few examples.  On a statistical average basis my blood cholesterol numbers have been considered normal to mildly high over the years, so I was concerned about whether I needed to try to get my numbers down.  Anyone who has had high cholesterol knows that it’s almost impossible to affect with diet, a little less so with exercise unless you are a maniac, and relatively easy for most people via statin drugs.

I am leery of being dependent on any drug for the rest of my life.  What my doctor told me was, “Forget about cholesterol.  It’s not an issue for you.  Blood cholesterol levels are a proxy that we use to diagnose potential for coronary artery disease.  Having bad cholesterol numbers in and of itself is not a problem; it’s plaque buildup that’s the problem.  You have virginal arteries, as your fly-through just showed us.  No build-up, nothing to worry about, you can forget about cholesterol being an issue for you at this time.  Now, let’s work on taking care of your valve…”

I was kind of blown away by this.  Why is it that we are not using imaging technology as a standard tool in diagnosis when a patient has cause for concern (either because of high cholesterol or a family history)?  Before putting us all on expensive cholesterol-lowering pills for the rest of our lives — a practice which has become so commonplace as to be considered prophylactic as opposed to treatment — why don’t we find out exactly which of us actually need these drugs to lead healthier lives?

While the reasons are too numerous, mind-numbing and standard to rehash here, it’s clear that this is a microcosm of what’s wrong with our health care system, and until common sense is brought back into the equation, we will continue to spend more money for fewer health benefits than could be achieved today for wont of a small policy change.

Big thanks to my cardiologist, Dr. Ron Karlsberg for taking care of me and also for sharing his knowledge and making me an integral part of my own medical team.  Apologies to Ron in advance if I’ve misquoted or misremembered exactly what he said, but hopefully I got the spirit and main points right.



* More video here: valve from inside; valve from top via CT; heart from side via CT; false color CT of heart to see blood flow.

** Currently I am on a daily dose of a drug which is a vasodialator that reduces vascular pressure away from my heart so that less blood regurgitates.

*** The long term danger with my condition is that the heart, through having to work extra hard to keep my blood pressure as it should be, could enlarge over time and lose its elasticity, eventually leading to heart failure.  Short of the heart enlarging past a certain point, there’s apparently little or no further danger from my condition.

  • One person responded to me privately:

    The stuff about statins causing heart attacks is a bit overstated. If you looked into it, I think you would find that rhabdomylosis (sp?) is a side effect that affects a minority of patients, and when it does, they know about it (feel their muscles aching) and get a change in prescription. Also,the technology that imaged your coronary arteries in cutting edge and very expensive and would not as yet be expected to be available to most patients.

    I wasn’t even talking about the health risks of statins, but this is certainly relevant to the equation. My point was economic. They range from $32 to $150 per month according to Consumer Reports. Even at the conservative number it would only take 10 years before the cost of imaging was eclipsed by the cost of statins. At the $150 rate, you are talking two years. If you are not the kind of person who builds arterial plaque, why would you want to waste that money on a lifetime treatment that could cause other health problems?