Can I share a story?

• by Acubarry
• 2012-09-04 06:09:22
• General Posting
• 1057 views
• 4 comments

I have been reading the posts here on Pacemaker Club for several months now, and have found the site to be both a source of encouragement and a valuable reference; and I would like to thank all those who take the time to reply to all the enquires, it is very generous and kind of you. I have however; refrained from posting until now, as I feel quite unqualified to answer the many enquiries here, at the end of the day I am only really an expert on my own story. Many of us, not surprisingly, share similar concerns and anxieties, so I have decided to post my own, still unfolding story, in the hope that it may be of some value to others? Unfortunately it is a rather long post.
On the evening of March the third of this year my heart slowed to such a point that it could no longer sustain consciousness. There was nothing particularly dramatic about this, no chest pain or palpitations, in fact anything to indicate a heart problem at all. I was lying on the couch watching TV and simply felt unwell and slightly nauseous. I intuitively knew that the safest place to be would be lying on the floor, you can’t fall any further, so as I slowly lowered myself to the ground I slipped into unconsciousness. Over the next hour I slipped in and out of consciousness several times, feeling increasingly nauseous and disorientated with each episode. Thankfully I did not need CPR, and at a guess the longest I was unconscious for would have been some 10-15 seconds. My boyfriend called an ambulance, the paramedics arriving shortly and attached all their wonderful equipment, one of which was an ECG. I fainted away again, and as I gradually regained consciousness I heard them say “did you get that”? “Yes we got that one”. A third, senior paramedic entered the room, he looked at me, looked at the ECG printout, looked at me again and said, “you need a pacemaker mate”. He wasn’t wrong, and at 4am, after a few hours in A&E they wheeled me into cardiology.
I’ve had infrequent palpitations most of my adult life, that is they started some 30 years ago, I’m now 55. They have gradually increased in frequency & strength so that over the last 10 years or so I’ve had many ECG’s which have always been fine, with no indication of any heart conditions. My palpitations have always been associated with coffee drinking; so that over the years I’ve gradually reduced my coffee intake, until last year when the palpitations had become a daily occurrence, I stopped coffee altogether. By now though I had discovered other trigger factors, namely chocolate, and some herbs & spices on certain snack foods. Increasingly though the palpitations had taken a life of their own and no matter what I ate or drank every afternoon or evening I’d have an attack which would last 10–30 seconds; and increasingly I was starting to become concerned by these episodes. Still there were no clear signs of disease or cause for alarm. Many times with my doctor we would discuss halter monitors and such like, but as the ECG’s were always clear and my work wasn’t affected nothing was ever actually done. My doctors’ diagnosis was primarily one of anxiety; which raises the question – was I anxious because I was having palpitations, or was I having palpitations because I was anxious? We talked about anti-anxiety drugs, however my heart failure decided everything for us.
At 8am on the Monday morning the head of cardiology made her rounds, she asked a few questions, listened to my chest and then ordered a chest x-ray, an ultrasound and an MRI scan. By 5pm I was back in my bed with a shiny new pacemaker and a damn sore shoulder (Medtronic IPG Ensura EN1DR01). On the Tuesday afternoon I was discharged and returned to work the following week.
My diagnosis was & remains ‘Sick Sinus Syndrome’ and as the MRI scan had revealed unusual and extensive shadows (damage) on my heart I was booked in for an angiogram for the end of the month. Meanwhile I was to take Metoprolol (Beta blocker) and Lipitor (anti-cholesterol) daily. A month later I had the angiogram and it was all clear – as the surgeon said as he removed the various paraphernalia from my groin “the plumbing’s fine mate, pity we can’t say the same about the electrics”. It was a Friday afternoon.
Unfortunately at this point things took a turn for the worse. The following Tuesday while at my doctors for a script I happened to mention that my left hand had become a curious shade of yellow and purple, normally he said he wouldn’t be too worried about it but as I had recently had the two procedures he ordered an immediate ultrasound. The scan was positive and barely two hours later I was back in hospital with a substantial blood clot in my upper left arm. I’m there for a couple of nights as they access the situation and begin the Clexane and Warfarin. The doctors are still undecided whether the clot was a result of the pacemaker or of a clumsy cannula insertion for the angiogram. No matter, back home (on Good Friday) the nurse begins to call for a daily INR check. They may well have kept me in hospital except that it was now Easter and they like to empty the place as much as possible. However on Easter Sunday afternoon my heart went into meltdown.
During the four weeks I’d had the pacemaker my palpitations had not gone away and every afternoon I’d feel the familiar dull thud in the chest – that falling away feeling and the accompanying slight dizziness and hot flush as the blood drained from my head only to rush back a few seconds later. That afternoon though the palpitations started about 4pm, and just didn’t stop, by 10pm I’m sick and beginning to faint away, my heart racing and not seeming to settle down. I asked my boyfriend to take me back to the A&E (the place is beginning to look very familiar). I’m in hospital for five nights. They interrogate the pacemaker to see what’s going on. It produced a print out the size of a small town telephone directory. Turns out that there wasn’t a day go by without my heart registering all manner of arrhythmias and tachycardia’s. The cardiac team came round “we’re going to ablate”. I had never heard the word before, and on the Thursday of Easter week I’m wheeled into the electrophysiology/ cath’lab and after three hours of the most strenuous and debilitating torture (they prefer not to use general anesthetics) they wheel me out, without the ablation. The area they need to ablate is on my left atria, to do this they need to go across the heart and there is the risk of bleeding. Unfortunately I’m on a high dose of warfarin and they decided that it’s just too risky. ‘Go home, get rid of the blood clot, stop the warfarin then we’ll have another look at it’. They stop the Lipitor (no need for it) and stop the Metoprolol (doesn’t work) and I’m given Sotalol instead.
So I’ve been back at work this past four months. The blood clot finally cleared and I stopped the warfarin three or four weeks ago. My 80mg of Sotalol daily seems to keep my heart in check for the moment. I only get a very slight palpitation every three or four days, but nothing like before. But to be honest things are not really right. I’m not the same person I was six months ago. I’ve never regained the same energy levels that I had pre-pacemaker and I tire very easily. How much of this is physiological and how much existential I really cannot say.
So last Thursday I’m back for my ablation and after another three hours – still no luck. Some of the machinery they use broke down (it happens) but more worryingly they noticed that my heart was throwing up some new abnormal arrthymias, and that there were now numerous areas for ablation on the left atria, and it was decided that a much larger procedure was needed, at a later date, at a different hospital, and again it would be too dangerous to proceed at present.
I was hoping that by this time to have had all this sorted. Alas no. I don’t think that there’s to be an easy way around this. Although not confirmed it appears that I’m going to get a halter monitor sometime over the next few weeks so they can check on the new arrthymias – who knows what they’ll find?
It’s spring here in Australia. The sun is warm; the sky is blue, turned into a terrific day. Thanks for being here. Baz.