About me – the backstory

I was operated on last December, in Switzerland, where I now live, to treat a congenital malformation of the aortic valve in my heart. The operation – which I researched extensively before agreeing to it – was only necessary because, with age, this kind of valve narrows dangerously, and an even more dangerous aneurism can form in the aorta itself. In “rich” countries the operation is a fairly well known procedure known as the Bentall procedure. (At least that’s what it’s called in my part of Switzerland – these things tend to have names that vary from language region to language region.)

I had had no symptoms to disturb my usual daily life until I was operated on. This may not be common, but read on …

The valve problem, as far as I remember, was only discovered by chance when I was about 51 – thanks to another congenital abnormality, which is much, much rarer, and gets doctors very excited. Even today there is still some dispute about whether it is indeed the syndrome I have, because I am very fit, and have been exercising my body nearly all my life: ballet, swimming and diving as a child, modern dance later on, and training in a gym for at least the last 30 years, supplemented by skiing, hiking long distances, and learning to surf. I am now 60, but people often think I am about 45.

The rare abnormality is called Scimitar Syndrome, and has never given me any trouble apart from getting out of breath faster than you’d expect from someone as fit as I am when swimming or walking uphill. That was the case even as a child, and I certainly found it puzzling. I was 23 when the abnormality was discovered, by sheer chance, at the Hammersmith and West London Hospital in London, where I was living at the time. (I had gone to Emergency because I thought I had bronchitis again, and remembered how nasty it had been before. They x-rayed my chest, and found something weird.) There was no internet in those days, and the only doctor at the hospital who had ever come across anything similar, had heard of a little boy in Canada who had Scimitar Syndrome too. That’s how rare it is and was – less than 1 person in 100,000.

When this syndrome was first discovered, it was interesting to me for a while, but I had my life ahead of me, and anyway, it’s not the British way to coddle yourself unless you’re near death, and I didn’t even have bronchitis after all! I continued with my life, commuting to my job every day, doing my modern dance classes at Pineapple once a week, and smoking like a chimney. No one suggested I stop smoking. (I gave up on my own about 7 years later.)

Every time I moved to a different country, doctor visits which obliged me to explain this rarity (don’t look for a heartbeat on the left – my heart is more to the right. No, it’s not mirror-image organ syndrome, etcetera.) would result in great medical excitement – once the doctor finally believed me. Medical students would be ushered in to look at the visible difference between the left and right sides of my thorax (with my prior permission, which I always gave, not being an overly sensitive or prudish person, and being a great believer in educating anyone who showed an interest).

Back to the aortic valve. When I was 58, my GP sent me for a checkup to the cardiologist who had seen me when I was 51 and getting everything in my body checked because of a chronic cough. (Ten years later I still have the cough. I gave up seeking the reason and a treatment a long time ago.) Like an obedient fool, I went to the checkup. This cardiologist told me the valve stenosis he had already seen 7 years earlier was now worse, and proceeded to tell me what heart surgeons were going to do to me, including installing a mechanical valve to replace the tired-out one.

Let’s get one thing straight: I am an adult living in a country with certain human rights, including the right to information, and the right to personal choice in a great many matters. No one tells me what they are going to do to me – not since I left school, and that was a long, long time ago. This high-handed attitude confirmed what I’d already noticed in the cardiologist concerned, so I immediately started looking for one who would be my partner in determining what to do about both my enfeebled aortic valve and the aneurism that had developed in my aorta itself.

After nearly a year and quite a lot of effort, which included reading a lot and asking questions on the various social networks I belong to, I found someone excellent. The options he explained to me in detail preceded a number of tedious physical exams over a period of several weeks, which revealed that nothing less invasive than open-heart surgery would solve the aneurism problem. The choices were: do nothing (resulting in more or less sudden death in the next 18 months when the aneurism burst), take medications (which don’t work – his words not mine), get the TAVI procedure, which replaces the faulty valve but doesn’t even begin to address the aneurism, or open-heart surgery.

During the year of my search for a trustworthy heart-specialist, I had my 60th birthday. Personally, I think 60 is a good age to have reached, and having to check out at this age did not appal me. I’ve already had a rich and eventful life, full of character-building experiences. But anyone lucky enough to have someone who loves them dearly considers the wishes of those they would leave behind. I decided to go for the open-heart surgery, but opted for a biological replacement valve, because I have no desire to live beyond 78 anyway, and certainly don’t want to be dependent on blood-thinning medication for the rest of my life.

When weighing up my decision, I also kept in mind that the operation would be done in one of the richest and most advanced countries in the world. A poor outcome, I thought, would be dying on the operating table during narcosis. All the worst possible outcomes I could imagine (brain damage due to oxygen depletion, total or partial paralysis …) were dealt with in my 28-page Living Will, which is a document accepted throughout Switzerland, and which I was going to update and hand to the hospital authorities on admission. So I thought I was covered.

When you agree to this kind of surgery, which involves sawing open the sternum, rerouting the heart and lung functions to a heart-lung machine while the surgeon dicks around in your chest cavity, then rejoining the bits and shutting off the heart-lung machine, you have to sign a consent form first.

The consent form mentions several risks you will run if you agree to the operation, including (among others) death during the operation or being stuck with an implanted artificial  pacemaker for the rest of your life (only 1% of those who undergo the operation suffer that fate).

As you can see, I did not die during the operation. But I was in the one percent – and after 6 days and nights in the hell they call “Continous Care” at the CHUV (about which I have written here and here) a pacemaker was implanted in my chest.

Here is a picture of what it looks like.

pacemaker-2017-02-17

But the fact of having this chunk of metal sticking out of my chest is the least of my problems. I am now dependent on this thing, and it’s a matter of life and death. I am supposed to be grateful.

At no point has any member of the surgical team said to me, “I am so sorry this has happened to you”.

God forbid.

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