Getting used to being handicapped

My new cardiologist – an absolute gem, because he is fit and sporty himself and does not have delusions of grandeur – has tweaked my pacemaker so that it is now no longer set to “Usual activity level – LOW”. Why am I even surprised that it was set at that level in the first place? Did I not explain to every single member of the medical profession at the CHUV that I was very active? That I trained at a gym most days of the week? Could they not see my muscles and lack of excess fat?

Of course they could. They just didn’t give a shit. And after the operation, when you wake up with 7 (SEVEN!!) extra kilos of weight due to all the iced water they pump into you when taking you off the heart-lung machine … well, I guess my body didn’t look so sharp any more.

And y’know, I am a woman of 60, so obviously ready for the knacker’s yard anyway …

At the CHUV, the approved propaganda about my pacemaker, which some medical “expert” repeated to me without fail every time I showed up with questions, was:  “Just don’t think about your pacemaker at all! Continue with your life as usual.” Which is probably fine if you’re 85 and spend most of your day watching TV. And if you don’t have an inquiring mind.

So I have continued with my life as usual, which means training at the gym nearly every day for the last 5-6 months, according to how my body feels on the day, and what I can manage to do. It has been hard, because since the pacemaker was inserted, none of the heart-rate gadgets I have tried to use when exercising capture my heart-rate regularly or reliably. So when I do my all-important cardio training, I have to run according to what I feel.

I know I am now far more feeble than I was before the surgery. Endurance has taken a hit. Muscle-strength has taken a hit. Co-ordination as well!

(A reminder: my surgery was “preventive”. I had a tired-out bicuspid aorta valve, and an aneurism …. but no symptoms. The pacemaker was the result of the operation not going quite according to plan.)

The new pacemaker setting seems to have helped. My accelerations are noticed faster by the pacemaker. Fast speeds are no longer quite as exhausting.

Also, my new cardiologist, when making any kind of change to the settings, has me sitting in a chair in front of him, where we can both see the screen equally clearly. And he discusses any change he might make with me. At the CHUV, you have to lie on an examination bed like the helpless nonentity they think you are, while a doctor fucks around with settings in front of a screen too far away to see, and angled away from your prying peasant eyes. (And they don’t even tell you before they start doing a test that may result in indescribably horrible, terrifying sensations in your chest. And after that they tell you the pacemaker is working perfectly and you can come back and get it checked in a year’s time.)

The respect and humility of my new cardiologist is such a shock after the CHUV that I find myself almost weeping after a session in his office.

What you need to know about having a pacemaker – apart from how large and visible it is – is that it has all sorts of odd criteria according to which it decides whether it needs to accelerate or not. (A heart with a conduction system that isn’t fucked does this all by itself, and is far more sophisticated.) Some of the pacemaker’s criteria are counter-productive, as well as downright incomprehensible. Mine, apparently, decides that every time I bend forward (to weed the garden, feed my cat, pick something up off the floor, do yoga or Pilates classes) it needs to accelerate like hell and make my heart beat so hard you can practically see it under my skin! The experience of this happening is so horrible that I sometimes just give up and go and lie down. WTF is this about?

Once I am satisfied that the newly programmed “activity level” setting actually matches my lifestyle, we are going to look at the setting that dictates the pacemaker’s behaviour when I bend forward.

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