Tachycardia and I

Introduction

2010-03-30T14:28:00.002+01:00

I have today re-sequenced this blog so it reads from top to bottom like a real story. That is in itself a statement of faith that its all over and I won't have more treatment to record!

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By way of background: when this story started I was 52 and considered myself in good health -- my weight and height were roughly proportionate, I had given up smoking 6 years before, and although in a sedentary profession (IT) I had always participated and enjoyed a certain amount of exercise -- a progression from athletics and squash to cricket and later golf. I enjoyed walking the Downs and had climbed Kilimanjaro at 40 and the Inca Trail at 50. I am male, white and of Afrikaans i.e. mixed German / Dutch descent.

In the autumn of 2008 I would sometimes notice intermittent spells of dizziness when playing golf or climbing many steps (>3 storeys, say). It would affect my ability to focus for a few minutes and then pass. I didn't think much of it.

In March 09 we were on holiday and I took the day out to play golf at a local club, where I was made welcome. It was a lovely day, warm and without wind. After about an hour I got badly out of breath and after another hour, as we were halfway around the course, it was obvious that I couldn't finish -- I had no breath and was slightly dizzy. Rather than abandon the round, I hired a buggy and managed to drive the other 9 holes and finished. The next day we walked 5 miles along the coast and I felt fine -- nobody in the family noticed anything amiss. On that holiday I played 2 more rounds at different courses, each time hiring a buggy, and finished without difficulty. On my return to England I played at Pine Ridge and again drove around on a buggy as I didn't want to risk making a fuss in front of people I knew, nor having to abandon one of my favourite activities at one of my favourite courses. The next week I played at my own course, walked around all 18 holes and was fine. It was all very confusing.

At this stage I went to my doctor and he agreed that it all sounded a bit strange and deserved to be looked into. Golf isn't particularly exhausting and shouldn't have that kind of effect, and all my other health indicators were OK except for cholesterol, for which I had been taking statins for a while.

He made me an appointment with a cardiologist. While waiting for the date to come around I enjoyed early summer in England -- surely the best thing in the world. We walked on the North Downs a few times, and I played as much golf as I could -- perhaps 3 times out of 4 I was fine, and in the other case I would either have to pull out because I wasn't feeling well, or would manage to continue through the dizziness and breathlessness (with damage to my game but saving my face).

So what is it then?

2010-03-30T14:26:00.002+01:00

Because I had no chest pain, the cardiologist wanted to keep an open mind, but he was clear that he suspected an irregular heartbeat of some type. A friend with some medical knowledge said that meant I would probably get a pacemaker, so I started reading about pacemakers -- not so much how they worked (which isn't that interesting at a functional level) but about the surgery, recovery time, and how to live with one. For example, passing through airport X-ray screening. This sort of thing: http://www.nhs.uk/Conditions/PacemakerImplantation/Pages/Introduction.aspx

But all of this was still in the future. The tests were easy and therefore frustrating -- the echodiagram looked good, said the operator; I felt fine on the exercise ECG and could have carried on with that all day; and when I did the 24-hour ECG (wearing a Holter monitor) no symptoms came up, although I went out in the balmy summer evening and played 9 holes, and a further 9 the next morning early. To look for other possible causes of the dizziness that was my main symptom, I also went for a brain scan, which was an interesting experience -- thank God I'm not claustrophobic!

When I went back to the cardiologist, his view was that he had seen nothing in the results that made him think the reason for my dizziness was to be found in my heart, and intended referring me to see if some version of epilepsy was involved.

I was devastated. Partly because this upset the simple mental model I had built of how I would have a pacemaker by Christmas and the problem would not affect my life after that, except for a battery change every 7 years. Also because I know from computing just how hard it is to find an intermittent problem, when you don't know where to look, and therefore if it doesn't occur for a while you don't know whether it had gone away or would come back at an inconvenient time.

We had a discussion about what could be done to get more information when the next episode occurred, and he suggested the implantation of a loop recorder -- essentially a memory stick that is implanted under your skin and records your heart activity. The records could then be downloaded and there would be some information to further the investigation. This sounded much better -- I could see the value from the point of problem-solving, and it also satisfied my need for action.

So I went home, waited for the insertion to be scheduled, went on with my life, and read about loop recorders -- this sort of thing http://www.sussex-cardiac-centre.co.uk/2i-loopimplant.htm

The Loop Recorder (Reveal device)

2010-03-30T14:23:00.003+01:00

Having lead a pretty healthy life and generally avoided such things, I had no idea that surgery could be so easy. I went in one morning, not having had breakfast, was told to climb into bed where I lay for the morning, doing email on my Blackberry after exhausting my reading material. Early in the afternoon I was wheeled into a little operating theatre -- why do they call them Labs? Anyway, the surgeon seemed to proceed very efficiently while he chatted to me -- I suspect out of a professional desire to gauge my state rather than just to pass the time of day. I felt the incision etc but it was a little distant and quite painless, as if he was cutting a close-fitting garment like a sock. Creating a little subcutaneous pocket involved some pushing and pulling but overall it was over quickly and easily. At the crucial point he asked me to open my eyes, which I had closed against the bright light, to see the device before he inserted it. It looked just like a memory stick. I remember thinking that I hoped they had put a battery in and switched it on, but thought better than to ask.

Back to the ward, lots of cups of tea, did some more email, and had sandwiches for lunch. The physiologist came to give me the control device for the recorder. It looks like a remote garage door opener, and to press "record" you need to hold it very close to the recorder, which had been implanted a few inches above my left nipple. Actually, that is a misnomer; it records all the time. When you press the button, and the signal goes through your skin and clothes to the recorder, it preserves the previous 5 minutes from being overwritten and adds the next minute, so that by the time you realise something is wrong the information of what lead up to it would be stored. In addition, there was software on the device that monitored my heart and recorded events that fitted certain parameters it had been set up with. So if something happened then there would be a recording even if I didn't push the button.

She gave me a pamphlet that set this all out, and a little card for my wallet that would explain to a security guard why I set off a metal detector. I was also asked to stop wearing my phone or blackberry in a shirt pocket, and preferably to hold my phone to my right ear.

In the early evening my wife came to fetch me on her way home from work. I worked from home the next day, and the day after I was in the office. I had to wash my body a little carefully, and a beautiful bruise was spreading over my chest, but I was fine. The whole thing had been very smooth.

The arrangements were that I would go back to the Catheter Lab in 6 weeks or so, to make sure that the device was working properly and to adjust the parameters for recording. Thereafter the device would be interrogated every few months on a pre-planned schedule, or out of sequence if I had triggered it 3 times between visits, as that was as much information as it could contain.

Hard data, at last

2010-03-30T14:19:00.003+01:00

For about 6 months I'd been experiencing at least one noticeable episode per month; something that would make even very moderate exercise more difficult. Within a week or so of having the Reveal device installed, one occurred while walking the short distance from Pall Mall to Waterloo station; surely not more than a mile. I'd never had one while just walking in the city, but when I got to the train I realised what I had just experienced and got the remote control out to get my first recording. I was absurdly pleased and felt that this would be the first hard data which would lead to diagnosis and then to treatment -- it felt that much closer to being fixed, whatever "it" was.

A week later I was asked to play in my first inter-club golf game. It started really well, with an amazing putt on the third and a very lucky approach shot on the fourth, which gave me a simple birdie putt. But on the 6th "it" struck and my ball went haywire. On the 7th hole it was clear that I couldn't apply myself, so I excused myself, shook the hands of the other players and activated the control. They were bemused and had no idea of what to make of it, but being English they wouldn't ask quetions and let me be.

I had to rest a while before walking to the veranda of the clubhouse, where I sat for half an hour or so while having an amazing trip, to which the word "dizzy" doesn't do justice -- a relaxed spaced out trance, is probably closer to it. After quite some time of this I activated the recorder again because I thought this was quite different from before and might also be worth recording.

So after a few weeks the three recordings had been made and I got in touch with the clinic to have the data downloaded and interpreted. I dropped in last thing one afternoon, on the way from work. When a printout was taken, my immediate concern was whether the recording showed something out of the ordinary which would aid diagnosis. "Oh yes" the physiologist said after she went to call a doctor, "it showed lots and we want to investigate it further, and are admitting you to hospital immediately". I wasn't very pleased with this at all -- my plans didn't allow for being admitted to hospital for up to 10 days (the doctor's estimate) at a moment's notice, nor for not being allowed to drive.

Perhaps this was when it sank in that I was dealing with something a little more than just an inconvenience. Until then I don't think I had allowed in my mind for the possibility of long sick leave, a serious operation, or an incomplete cure. For the same reason I hadn't prepared my office or family for anything like that.

All of the next day I stayed in a hospital bed, until I saw a cardiologist in the evening. Up to then I had done a lot of reading on the internet about the various heart ailments, and understood that there were various types of irregular heartbeat. Now it was clear that I had one of these, as the cardiologist had suspected from the beginning; in particular, I had a broad sustained tachycardia, which meant that when my heart started pumping very quickly, it became ineffective at supplying oxygen-rich blood to my body and particularly to my brain, which I experienced as dizziness.

He explained that the next test would be an angiogram, to see whether there was significant narrowing of my arteries; not because he expected this to be the case, but because it was relatively easy to confirm or to eliminate as a possibility. And he thought I'd be safe driving, so off I went to await a date for the next step.

Angiogram

2010-03-30T14:16:00.003+01:00

I was in a great hurry to have the angiogram done, as it had been positioned to me as a "tick in the box" that was unlikely to be productive, but had to be done just to check. I don't mind the careful approach -- this sounded like checking the oil level before setting out on a journey. But I was keen to get to the real stuff, i.e. finding and fixing the tachycardia that I now knew I had.

While waiting for my appointment to come around (which was only about 2 weeks) I could read more about the condition which now had a name. It seemed that not all tachycardia (-ae?) had the same symptoms or treatment -- probably not too surprising, but news to a layman. It meant that I couldn't really focus on how long I was going to be off work, how I would be treated, etc. For some reason I assumed that I would get an ordinary pacemaker or one that also had some of the functions of a defibrillator.

I also found this account by someone who gone down the road on which I was now embarked: http://www.timberwoof.com/surgery/index.shtml. It helped me to prepare myself mentally, even though I knew that his diagnosis and treatment might not be the same as mine. In the guestbook of that site there were some comments from other patients, so I got to understand that ablation (if I was going to be offered one) was somewhat controversial and that some people had had bad experiences. However it was a good news site; he'd made a complete recovery as far as I could tell and could drink as much coffee and get as much exercise as he wanted.

There was lots of information about angiograms, specifically also the NHS patient advice pamphlets. I could understand that there would be a hole in an artery, and that if a significant narrowing of an important artery was found, a stent would be inserted. I also expected that if no stent was required, I'd go home the same night.

So I took a train to London, a cab to the hospital, and checked in. The nursing sister in charge of the ward, quite a senior person, took a lot of time to explain to me what would happen, which was a relief as it allayed the anxiety you have when not knowing what to expect. In the early afternoon I was wheeled down to a catheter lab -- the hospital had 5 of these going! I lay on an operating table and watched on X-Ray how the wires were pushed up my artery. Then the dye was released to provide a good contrast on the X-Ray and the cardiologist could see that my major pipes were not that narrow. At any rate he concluded that such narrowing as there was, was not the cause of the symptoms I had complained about. (Because I am allergic to shellfish it was thought I might be allergic also to iodene (apparently these allergies do sometimes go together), and I had to have a different dye). We chatted a little when he had finished the angiogram, and he said that he would refer me to a specialist for an electrical investigation of my heart, where he had always thought there was a good chance the problem would be found.

I hadn't realised that arteries are under such a lot of pressure -- a special closure was inserted to provide a higher level of assurance that the artery wouldn't start spurting out of the afternoon's wound, which after all was big enough to take the catheter apparatus. Accordingly, when I'd had my sandwich and started wanting to go home, there was quite a lot of resistance to having me go by myself. After walking up and down the corridor 20 times, with the wound still dry i.e. not leaking, I was allowed to leave to take a cab to the station and a train home -- thank goodness. My groin was a little stiff, and I had to walk gingerly, but I was fine.

While hanging around the ward, waiting to be released, I had browsed among a very good set of booklets produced by the Heart Foundation. One of them set out the possible treatments for irregular heartbeat, and for the first time I got to understand what it would mean if I got a defibrillator inserted. From time to time it might decide to give you a non-trivial electric shock, so you had to stop doing things where an unexpected shock would be unwelcome. Like skiing, diving or (!) driving a car for at least 6 months, after which the ban would be reviewed. This weighed quite heavily on my mind -- I still had a very optimistic attitude that things would sorted out quickly and with no lasting effects. Not driving for at least 6 months would make a big difference to my life.

Scoping out the heart's electrical system

2010-03-30T14:11:00.001+01:00

After the angiogram my cardiologist referred me to an even more specialised colleague, who dealt with the electrical system of the heart. I saw him for a consultation first, at which he made the point that while the Reveal device was very useful in identifying that there was a tachycardia, it couldn't pinpoint the origin, which was of course important to know if there was to be any attempt at ablation. He would therefore investigate the electrical working of my heart, and expected two procedures -- the first to gather data, which would be considered before deciding the second step. He inspired a lot of confidence in me, as he sounded like a careful and considered person.

Two weeks later I stopped taking my beta blockers. Four days later, not having had breakfast, I got dressed casually and took a train to London, took a tube and then walked to the clinic. By now I was an old hand so it didn't bother me to put on a smock, climb in bed, have ECGs and have a needle inserted into my arm.

Then I took the lift down (I was walking) and sat in a little room which showed tennis (a tournament in France -- it was too early in the day for the big names to turn up). After a while the specialist came in, still in his pinstriped suit, to say hello and to remind me that he would just be trying to understand where and why things happened in my heart, although if he found something "ablate-able" he would ablate it. I said something like "if you can fix it today I'll be so much happier as I'd rather not have to come back" and signed the consent form.

He went off to get dressed and after a while I was called into the lab and made to lie down. As always there was an assortment of nursing staff and radiographers, and an ECG was attached. I was lying where I could see two large screens and also an ECG trace and other information.

It went quite easily. I got a local anaesthetic in my right groin and then I felt some pain, which I had been given to expect would be caused by the 3 holes being made for the wires. This hurt quite a bit and after a while I got a second short of anaesthetic (and ultimately a third -- evidently I'm not very tough). Then I got the butterfly feeling in my abdomen which I'd also felt at the angiogram and assumed was associated with the wires, and I could see them on the screen.

He applied some electricity to the area he thought was the origin of the tachycardia, and found it after a while. Soon he could provoke the tachycardia at will -- so the problem was no longer intermittent and he knew where it originated. He did this a few times and every time said "don't worry -- its me" lest I be alarmed by the feeling of tachycardia. I'd never had any pain from a tachycardia so it didn't actually bother me that much, although it was nice of him to think of reassuring me in the middle of everything else he had to do. It helped that I understood the fault-finding process, or thought I did, and that I was fascinated by the screen showing my heartbeat jump from 70 to over 200 every time.

At some point I was breathing very heavily (before I got the 3rd show of anaesthetic) and he asked me not to, as it moved the wires. I was pretty still after that!!

When he could make the tachycardia appear at will, he said he was going to ablate it and that I would have a burning feeling. I was still wondering what a burning feeling in your heart feels like, when he asked for energy to be applied and I had a real heartburn feeling. It has since struck me how strange it was that the expression "heartburn" got to be used for indigestion, as burning in the heart feels much the same way - how did the people know who coined the expression?

Anyway, after two bursts of heartburn he stimulated the same area but couldn't make the tachycardia come back. In my line of business (computing), if you can make a fault appear and then do something and then the same trigger doesn't cause the fault, its called a fix. Apparently also in medicine -- he was very pleased and so was I. When he came around the to the ward afterwards he did say that as he hadn't done a 3D analysis there might be more to it than he had found on the day, but at least then he would know where to look.

Well, it was all freewheelingfrom there. I was wheeled out, put in a ward for a few hours until I could show that I could walk, climb a few steps and go to the toilet. Fortunately I had arranged for my daughter to come and collect me, as they wouldn't let me go without an adult who could call for help if needed. So, with a 21 year old in charge of me, we took a cab to the station and a train home.

And that was the end of the ablation.

6 weeks after

2010-03-30T14:08:00.002+01:00

The surgical procedure was a low-fuss one -- from my point comparable to having root canal work but not so painful, and of course a lot of medical people and infrastructure were involved. Also it healed very quickly. After all, there were just the 3 small holes in my thigh.

Nevertheless I still had a feeling of not quite trusting the silence. I had earlier gone for weeks without an episode, so having a few good weeks didn't really convince me that it was all over. That I could forget all the thoughts I had about having to live with a pacemaker or defibrillator, or (much worse) that it would prove difficult to locate and fix the origin.

In the mean time the rhythm of hospital appointments still ran their course, and so after 6 weeks I had an appointment at the catheter lab, to have the Loop Recorder (Reveal device) interrogated. It had captured all the tachycardia episodes the afternoon I was in the theatre, when they were induced as a way of locating the source. That was just a curiosity to me, but it also transpired that nothing had been recorded since then. That was wonderful to know.

From a medical point of view they want to remove the recorder now, as it has served the purpose of proving that the dizzy spells coincided with the data recorded on the recorder. Thinking of how lost I had felt when there seemed to be no explanation for this dizziness, I want the assurance of keeping the device for a while, so that we can see every 3 months that nothing had occurred that was worth recording. Fortunately they seem to be quite prepared with my need for a comfort blanket -- perhaps it could come out in a year or so when I really believe its over.

After 3 months

2010-03-30T14:05:00.002+01:00

On the 10th February it was 3 months since the procedure and by now I'm starting to believe that its fixed. I seem to have lost the compulsion of giving people more information than they want, and in general am physically more confident. Even my golf is improving a little, although the winter conditions don't help.

My doctor isn't happy to leave the recorder under my skin; its a foreign body, he says, and moreover is likely to wander around under my skin. When there is a good diagnostic reason for having it, those factors can be tolerated; but he is so sure that I am fixed that he feels it serves no purpose and should come out. I guess I could refuse my consent, but so far his medical judgement has served me well so perhaps I should listen this time too.

Two questions that have fascinated me in the last few months, and have asked the cardiologists about:

1) What would have happened 25 years ago? The condition probably couldn't have been fixed, and would have been treated with drugs.

2) For how long did I have tachycardia? "A long time". It seems quite possible that my dizziness at 5,000 meter on Kilimanjaro, and ten years later at 3,000m in the Andes, were tachycardia brought on by the relative oxygen starvation (when the other people in the party, who were probably less fit than I, were tired but otherwise OK).

Now it hopefully is over.

You might be interested, gentle reader, to know that my out-of-pocket expenses for all of this was about £100 or so in parking, taxi fares and railway tickets. My medical insurance paid for 2 of the treatments but that is because I was in a hurry; I could have had it on the NHS like the rest of the saga, had I been prepared to wait for a month or two. And the removal of the recorder will not cost me anything either.

The end of the road

2010-03-19T07:30:00.003Z

Yesterday I checked in again at the Cardiac Catheter Lab to have the Reveal device removed. It was easy in a way -- I almost found my way through the labyrinth of corridors, and only had to ask for directions once. Some of the people even remembered me.

I changed, had the normal needle put into my hand -- for some reason it was difficult finding a vein which is not normally a problem with me. I knew the cardiologist too so it was a bit of a family gathering.

Into the theatre, draped in sheets, wired into the ECG, my hair covered up -- all familiar by now. God knows why they always say "it'll be a sharp scratch" when they inject you -- the injection of the local hurts a bit. There is a soft barrier under my chin so I can't see but I can hear some snipping and then there are few tugs and its out. Then they sew me up and all the sheets are removed amidst joking about a free wax treatment as the adhesive backing pulls out a few hairs-- fortunately I don't have a lot of body hair.

I get wheeled out and get a cup of tea and a sandwich. And its over.

Hopefully in 6 months' time I'll have to be reminded of what happened over the last 12 months, as the memories will have faded.

If you've read this far, I hope it has been worth your while. If you're facing cardiac treatment, then I hope in some way it has helped you address your own concern or uncertainty.