Sunday, March 2, 2014

News about my health

About a year ago, my second child was two, and while what I had was adequate, I decided to get some additional term life insurance since it’s still relatively cheap for the young and healthy. You never know.

Then a nurse who visited my home as part of the underwriting process recorded my BP at 150/60.

What? My BP had always been around 115/60-70.

She wasn’t that hot.

“Relax,” she said, “lie down and relax and we’ll take it again.” The trouble was, since I had had nothing to worry about, I had been relaxed, though after that reading, not so much.

We eventually were able to get a couple of readings at 130/50, and the rest of the interview and exam went well even though I was a little distracted by the high systolic BP and relatively low diastolic BP. As a cardiologist, I got to thinking about a heart valve problem that can cause that precise BP pattern: aortic valve regurgitation (leaking). I got out a stethoscope, and along with the first beat I heard when I put it on my chest, there was a harsh, loud systolic murmur accompanied by a loud diastolic murmur.

“Where did that come from?”

I kept listening, beat after beat, wondering if what I was hearing was for real, but it didn’t go away.

Fuuuuck. (Sorry for the technical doctor-talk)

The office right next to mine at Foothills Hospital is occupied by a supremely talented and bright cardiologist with expertise in heart imaging. She arranged an ultrasound and MRI: aortic regurgitation (AR) is graded as mild, moderate, or severe, and mine was severe. Boom.

The other thing we learned was that this had been going on for at least several years since the extra blood volume rushing back into my heart had caused it to enlarge.



The good (?) news was that my heart pumping function was still normal, everything else looked fine, and I had no symptoms. In fact, I had trained and run my first 10k race about 6 months earlier and had been running 5k every morning in Maui just a couple of weeks earlier. I wasn’t in the best shape of my life, but I felt pretty darn good.

Questions arose and played a rather constant game of musical chairs for a seat in my consciousness. How had I not noticed this before? Why was my valve leaking? Why me? Can my kids get this? Will I live to see 50? 60? 70? Tomorrow? And of most concern, because AR is a mechanical problem that requires a mechanical solution, namely valve surgery, when would I need to have mine?

There was an easy answer to the first question. Aortic regurgitation can progress slowly over time and the heart compensates by enlarging to accommodate the blood that leaks back with each beat. The net forward blood flow remains normal, so symptoms are rare until it’s been around for a long time. As a cardiology resident in my twenties learning how to do and interpret heart ultrasounds, I had done several on myself and my aortic valve was normal then, so this had to have developed sometime in the past 20 years. Diastolic murmurs are rare and challenging to hear, so it’s no surprise that my GP hadn’t picked up on it despite annual or biannual check-ups that I’d been having since I was 40.

There is a list of well-recognized causes of AR. The most common culprits for a young person include a previous infection that affects the valve, being born with a bicuspid aortic valve (which is a valve with 2 leaflets instead of the usual 3), or dilatation of the aorta so that the leaflets stretch apart and no longer touch in the center. None applied to me. To this day, the cause remains unknown.

Timing of surgery in severe AR is a question that doesn’t have a clear answer either. Thankfully, there are reasonable ones. The concern is this: as the heart enlarges to compensate, there reaches a point where irreversible heart dysfunction begins to develop. The enlarged heart can become weak, not squeeze well, and if left long enough, that may be permanent. One might ask, why not operate right away in that case, so as to not permit the mistake of waiting too long to occur. Unfortunately, the surgical procedure and options are far from perfect. The operation itself has a risk of death that approximates 1%, and the best solution is to replace the leaking valve with either a pig valve or a mechanical one. Pig valves don’t often last > 10 years in young people, so once the first surgery is done, a clock starts counting down to the timing of the next valve replacement operation. A mechanical valve is likely to last for many decades, but the foreign material is prone to blood clots that can cause life-threatening valve blockage, or, if the clots break free and get pumped into and block a brain artery, stroke. Oral anticoagulants (OAC) are forever required to prevent these clot-related complications, and they increase the risk of bleeding, which, while small, builds up over the years. Have a car accident on OACs and serious bleeding can turn fatal. Bang your head on OACs and a goose egg can turn into a coma like the one Michael Schumacher has been in for over 2 months. So there are a number of good reasons to try to put off valve surgery as long as possible.

Back in the 80's & 90’s, there were even better reasons to put off valve surgery: the risks of the operation were considerably higher then. Not knowing when the optimal time to intervene and best preserve longevity and heart function, cardiologists made the decision to operate when the patient developed symptoms like shortness of breath, weakness, fatigue, and exercise intolerance. Thanks to several groups who performed careful long term follow up of consecutive patients with AR and reported their results in medical journals, some patterns began to emerge. As long as valve replacement occurred before the heart dilated beyond 55 mm during a contraction, or beyond 75 mm during relaxation, and before the pumping function had dropped below 50% (normal = >55%), nearly all patients had normal heart function after surgery. The latest guidelines recommending these cutoff values for valve replacement have been around since 2006, and updated ones are due any day now. My heart pumping function was 53-55% and my heart measurements were 43 mm and 63-65 mm respectively, so I hadn’t reached the cut-off values yet.

Still, the opinions of my cardiologist and others who had been involved in imaging my heart were mixed. While they agreed that surgery wasn’t urgently required, some advised making plans to operate within 6-12 months while others suggested waiting and watching the measurements with repeat ultrasounds every 6 months. My initial inclination was also to get a new valve sooner rather than later. I just didn’t like the idea of having the leak and knowing that it was causing loading conditions that were slowly changing the number, size and function of my heart cells. I was, after all, getting close to the cut off values anyway.

An ultrasound done 3 months later showed no changes, so we knew we weren’t dealing with a rapidly progressive process.  Long story short, I just had my one-year follow up ultrasound and it looks exactly the same. While the first 6 months after diagnosis were pretty stressful, all those circulating questions started slowly receding and I found myself gradually able to return to thinking about the usual kinds of things that I think about, including making plans for the future. Those were all put on hold for a while. My appetite returned to normal, but my diet improved. I kept exercising aerobically and feeling well. I made a lot less Lego.

Life is pretty much back to normal now, except for that common cliché that certainly applies to me: everyday, I wake up and feel lucky. There is an equalizing comfort in the knowledge that all that anybody has is this precious present.

I’ve seen a world class valve disease expert who is the lead author of the updated joint American College of Cardiology and American Heart Association valve disease guidelines. He’s followed many patients like me for decades, and he tells me that I may be able to avoid surgery for years. In the meantime, I’ll get ultrasounds every 6 months to carefully watch for any changes, and I’ll hope that more durable tissue valves, or more clot-resistant mechanical valves, or better OACs get developed. It’s pretty much business as usual again in our house.

I find myself wanting to share this experience with others, and wanting to keep a record of some of the things that are important to me as I move on. If the valve should somehow catch up with me sooner than expected, I like the idea of having a blog that my kids might be able to read and at least kind of know me by. That’s one of the hardest things to imagine, that I might die while my kids are too young to remember me, or to be influenced by me in a more-than-genetic way.

Remember that insurance that I applied for? Ironically, I was approved at a preferred rate for especially healthy and low risk clients. How d’ya like them apples?

Of course, I had to decline the insurance because of what I had discovered during the underwriting process, which is fine because I’m adequately insured anyway. If you have kids and you’re not, I strongly advise you to at least get some cheap term insurance while you can. Our bodies evolved on the African savannah over millions of years. There is no evidence of any intelligence in the design- only the pressures of reality selecting among random trial and error. That’s why we break down all the time. It’s amazing that I haven’t had any health issues until this and I hope that you’re all considerably luckier than that, but one shouldn’t count on it or take that risk with the well-being of one’s dependants. There is no magic keeping anybody safe. The sun rises and the rain falls equally upon us, so let's make sure that we have sunscreen and an umbrella.

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