A week ago I was pretty much packed and ready to go on a short holiday with Ingrid, who had been working too hard in her voluntary positions as Vice-President and Secretary of the Tewantin-Noosa Country Women’s Association and in the demanding role of Secretary of the Noosa Chamber of Commerce. Ingrid had earned a break and naturally I always prefer to be with her wherever she may roam.
Last Wednesday morning, a week before flying to Barcelona, I awoke as stunned as a mullet after a final sleep segment of 4½ hours. This duration was so unusual I immediately reached for my blood pressure monitor which showed I was cruising along at 130/60 with a heart rate a comfortable 68 beats a minute. Nothing wrong there. That the ME/CFS was giving me a bit of stick was not unusual and my cognition was good. So, despite the underlying discomfort, I was feeling buoyant. Some mornings the ME leaves me literally bewildered and speechless.
However, as the day progressed, I did begin to feel quite ill. The ME was still a 3, which I designate as moderate but at a level where I need to scale back activity to avoid the dreaded ‘crash’. In the early afternoon the sick feeling worsened. My heart was palpitating and I was rather dizzy. It was only mid-afternoon - when I began to puff hard walking up stairs that normally don’t test me - that I realised something was not just amiss but badly amiss.
I went to the study and pulled out the Omron auto blood pressure monitor. It showed BP at 165, bad. But there was a worse, number causing the high BP. My heart was pumping at just 41 beats a minute. I thought the Omron was faulty and repeated the test – 40 – and another three times 40, 40, 40. I called to Ingrid, told her what was happening and said it's Noosa Hospital Emergency time. The hausik is just five minutes away and I was admitted immediately, x-rayed, blood tested, wired for an electrocardiogram and given a diagnosis that the electrical communication between the top and bottom chambers of my heart had failed. Each chamber was functioning independently on back-up and they were not in harmony. It was a level two total heart block, the worst, but it was stable.
The 40 beats a minute slipped to 39. If the heart rate got below 30, I was told, there were drugs to assist. My need for intervention was classified as urgent, not critical. The block required a pacemaker to be inserted near the heart alongside the left shoulder. Two wires would extend from the device, one into each chamber providing the electrical current needed for the chambers to pump in harmony thereby restoring the heart’s functioning to normal. An ambulance was called to take me on the hour-long trip south to Sunshine Coast University Private Hospital's intensive care. A careful driver and two attentive nurses in a splendidly equipped vehicle. Another electrocardiogram en route confirmed the hospital diagnosis.
An hour later, in the magnificent edifice that is the private hospital, the heart rate settled at 35 and showed no inclination to move lower. I was given the third degree by young, laid back doctor. He classified my condition as ‘urgent but stable’ and scheduled me for surgery the next day (last Thursday) to install a pacemaker. Again it was determined that my condition required no meds. The heart was quite content to beat away on its 35 bpm back-up and all was well.
So far the entire medical response had been first rate. Throughout I felt I was in the capable hands of good, friendly professionals. But there’s always a catch. Striding to my palliasse came what was unmistakably a senior doctor. He was wearing a suit and an open collar that looked curiously stiff without its tie. How long had my symptoms continued, he asked, to which I answered they had onset suddenly that afternoon. He expressed immediate disbelief at my words, saying, “Impossible, the condition must have been affecting you for many weeks”. I responded, no, that – due to my poor health - I faithfully and regularly check and record my vital signs and repeated that the heart rate had dropped suddenly from the 70s to 40 beats a minute mid-afternoon and I had measured and logged the change. However, this man was not born to listen. With condescension and arrogance he declared the symptoms must have been around for “at least a week”, turned on his heel and stalked away.
The next day, Thursday, was boring - and I was 'nil by mouthing'. I took my usual medications but nothing for the heart. The heart rate had dropped to 33 during the night but recovered to stick at 35. I was scheduled for the day’s final pacemaker surgery at 6 pm, my doctors had set aside any need for urgent surgery. The area surrounding the future incision was shaved and the right side just in case. At about 6 pm my bed was wheeled to the theatre and I was prepared for surgery: first a calming sedative, then the ritual splashing of iodine and finally a strong local anaesthetic. I glided into a pleasant semi-conscious state. I could occasionally hear the cheerful conversation of the surgical team. About an hour later, I emerged from this bliss with the new pacemaker providing my just wired heart with a baseline beat of 80. Let me tell you, I felt very, very good.
Not so early the next morning, despite repeated requests beginning around 7 am that I needed my ME/CFS meds because I could feel myself skidding towards a nasty crash, two hours passed with nothing for me to ingest except empty promises. Then, into this scene of discontent, strode the bos dokta, who assured me he was indeed the bos dokta, and a flotilla of accompanying nurses. He asked how I was and, by now struggling with the ME but still capable of thought and speech, I said I was in an ME slump and had possessed no luck obtaining the meds I needed to get out of it. He responded, extraordinarily, that I was lucky to be alive. Lucky to be in this hospital. My life had been saved, he said.
"You were at death’s door and now we’ve rescued you." I said that’s rubbish and, were his words correct, I would have been given much more serious treatment, including meds for the heart. In fact, my condition had been stable for a day and a half and I’d been scheduled last on yesterday’s surgery list. This was hardly death’s door stuff. The bumptious one expressed that I knew not what of I spoke. I croaked back that he had failed to listen to me about anything and his talk about rescue from imminent death was bullshit. I suggested he needed to pick up his game and listen to his patients occasionally. He once again stalked out, calling over his shoulder, “I hope our paths never cross again”. A mutual feeling.
Anyway, life was good. The meds arrived and the ME never crashed, the pacemaker was getting the heart to pump at a nice 80 beats a minute, and I’d only run into one fool in two days in hospital. Ingrid drove back to Noosa beside a very satisfied ex-patient with a wristband that said who he was and brand new device implanted between his left shoulder and heart. I was told by surgeon Dr K K Lim that it was designed to last for 10 years constantly receiving updates communicating scores of data points to a monitoring group who would take action if ever in the future I really found myself really at “death’s door”.