Chapter Two – First Admission

I awoke later that same Friday morning to the sound of the telephone. As I came round and remembered the night before, my own heart started racing. It was all but certain to be the hospital and God only knew what news they were going to give me.

On the line was a senior nurse calling from the Cardiac Monitoring Unit at Castle Hill. Ann, she told me, had had some further problems after I left Hull Royal and had been transferred to the CMU at Castle Hill in the last hour or so. Visiting hours in the CMU were pretty informal I was told so I was welcome to come in and see her and that she was asking for me and would need some basics like pyjamas, toiletries and so on. In the meantime, she was comfortable, stable and in safe hands.

When I turned my mobile on, I was encouraged to see that I already had a text message from Ann telling me not to forget her glasses. I then grabbed a quick shower and called the children to let them know their Mum had been admitted and promised to keep them posted. I packed a bag with what I thought Ann would need and then jumped in the car and set off for the drive to Cottingham.

Little did I realise that this was to be the first of over one hundred such journeys.

The route from our home to Castle Hill is very picturesque and passes through some very pretty countryside. In May, with the season passing from Spring to Summer, it is particularly lovely. But I barely noticed it. Ann was on the Cardiac Monitoring Unit. My wife was in a cardiology hospital and not just on a ward, but on the monitoring unit!  That was a bit like intensive care. I just couldn’t get my head around it.

I remembered visiting my business partner in one such place years before. He was fifty-three. He was super-fit too. County standard squash player, captain of the golf club. I remember his embarrassment when I arrived.  “This is ridiculous isn’t it?” he said as I walked in. “Sure is”, I replied.

A few weeks later, we were at his funeral.

Would I be at Ann’s funeral in a few weeks? We were supposed to grow old together. Was that not going to happen? You don’t see the pretty landscape when these thoughts are hurtling around your head.

The wards in the Castle Hill Cardiology department are upstairs.  Wards 26 and 27 are for cardiothoracic surgery and they have the Cardiac Intensive Care Unit (CICU) where high dependency patients go before or after major open heart or bypass surgery. Ward 28 is for interventional cardiology (heart attacks, stent placement etc) and cardiac electrophysiology (arrhythmia patients and implants). At the end of Ward 28 is the Cardiac Monitoring Unit (CMU) containing the most poorly people needing intensive interventional or electrophysiology care.  Downstairs are the out-patient consulting rooms, operating theatres, the electrophysiology lab (the Lab – more of that later, much more) and, by the entrance, a small and pleasant café.

I had never been in the building before and I recall being surprised how nice it was. Ward 28 and CMU were both divided into four-bed bays with a shared bathroom and single en-suite rooms, the latter usually for the more poorly or longer stay patients. The CMU was just the same as Ward 28, with its own central nurse’s station full of screens replicating the monitors attached to all the patients. The only difference I could see with CMU, was that there were more staff per patient such that they were checked more regularly and monitored more closely.

The sound of the monitor alarms was all but continuous. After a while, you learn what they mean and can distinguish between the less important ones and the ones that tell you that a life is in the balance. When you leave CMU, the world outside seems unnaturally quiet and peaceful. For the first-time visitor, all the unfamiliar noises are very scary.

Ann was in a four-bed bay in CMU.  She had that same look on her face that said “What the hell am I doing here?” That aside, she looked much better than I had imagined and I felt enormous relief.

However, when she told me what had happened after I had left the ED, I was scared all over again. She could so easily have died right there whilst I was sleeping peacefully back at home. I really struggled to reconcile what she was telling me with the super-healthy woman I knew.

Apparently, the staff had cheered and applauded when Ann had arrived at Castle Hill. Ann had no idea why. They explained that she had self-cardioverted from the longest sustained episode of rapid ventricular tachycardia they had ever seen. In their experience, no-one before had ever managed to revert to sinus rhythm without intervention after such a long time in VT. Usually, without defibrillation, the patient would have gone into VF and died after no more than ten minutes.  I have done a little reading on this and have found a few examples of sustained VT episodes at similar heart rates of up to an hour but in all cases, the patients had to be electrically cardioverted. Some patients have had much longer runs but only at a much slower heart rate. I couldn’t find any examples of self-cardioversion after such a sustained run at almost 250 beats per minute. What happened to Ann was extremely unusual.

I have no idea why the ED doctors didn’t intervene sooner. I can only assume that her oxygen saturation levels remained high enough despite the fact that very little blood was being pumped around her body and so she remained conscious throughout. Had Ann not been so incredibly fit and healthy, she would have needed the defib or chemical cardioversion to save her life.

I simply couldn’t believe what I was hearing.

Later that day, she was given an echocardiogram and had a further ECG. We were told that a cardiac MRI and an angiogram would follow, probably after the weekend. The reason for the delay was that the staff who carry out these important diagnostic tests usually don’t work at weekends. When people say “Don’t get sick on a Friday!” they have good reason.

Time for another quick interlude to demystify all these tests.  Everyone has heard of the ECG, the electrocardiogram. This shows the electrical activity of the heart just like the monitors to which Ann was attached but in much greater detail. Lots of sticky electrodes are attached to the skin and the machine can read the electrical activity and prints it out as a load of wiggly lines on paper. An echocardiogram (or echo) is an ultrasound scan of the heart, similar to the routine scans of a foetus in the womb which shows the chambers of the heart and gives an indication of blood flow.  A stress echocardiogram (or stress echo) is the same thing but carried out during or immediately after strenuous exercise (on a treadmill or bike) and so is carried out to see if the heart is badly affected by physical activity. A cardiac MRI (cardiac magnetic resonance imaging) uses a powerful magnetic field and radio waves to produce detailed sectional pictures of the structures within the heart.  An angiogram is a special x-ray of the heart and surrounding blood vessels taken whilst a special dye (a radio-opaque contrast agent) is injected into the veins. Any narrowing of the blood vessels, notably the coronary arteries, shows up clearly. End of interlude.

The rest of that day, Ann’s heart rate was irregular and fluctuated between 50 and 110 beats per minute (bpm) at rest but didn’t go completely crazy again. Her heart rate was still going twice as fast for no apparent reason, but it wasn’t a cause for major concern.

The next day, Saturday 16th May, it was.

During the morning, Ann had three further major arrhythmia episodes. One of them was so severe that she had to be chemically cardioverted for the first time to slow a heart rate of 270 bpm. It was a terrifying experience and it meant that her condition remained very dangerous.

Overnight, a gentlemen on the unit had died in similar circumstances.  Of necessity, the bed was soon occupied again and its new resident had two artificial heart valves, chest and upper respiratory tract infections and could only walk 25 yards when he was well.  He was told he would be moving off CMU as this area was reserved for people who were very poorly.

It brought home to Ann and me that she really was extremely unwell.

Because of the dangerous nature of Ann’s arrhythmia, she was started on beta blockers – specifically Bisoprolol 2.5mg b.d. (b.d. means twice a day). The Bisoprolol initially seemed to do its job as Ann remained relatively stable for the next few days and on Tuesday 19th May, she was moved from CMU to Ward 28. The cardiac MRI was finally carried out during the morning and the results were promised in 24 hrs.  She was informed that the next investigation would be an EP study.  The planned angiogram had evidently been abandoned or forgotten.

On the Thursday, Ann was told by one of the junior doctors that the cardiac MRI had revealed scar tissue in her heart.  Ann had enough medical knowledge to be very scared by this news. There were lots of potential causes, and none of them were good news. Scar tissue detectable in scans can be an accurate indicator of a risk of sudden cardiac death.

However, it turned out to be utter nonsense.  No scar tissue had been found, nor did any exist.  The origin of this completely unnecessary and distressing news was never admitted or explained. Nobody apologised for the error. Nobody seemed in the least bit concerned. We can only assume that the young doctor gave the news to the wrong patient! Perhaps the person whose life was at risk was told that their scan was clear. Who knows?

Ann was also informed that she would soon be going for the EP study with a view to ablation of any aberrant nerve signals.  Basically, they were going to try and find the bad signals that were causing the arrhythmia and burn them away. In the meantime, her resting heart rate was down to a typical 40bpm (bradycardia) and she was experiencing blurred vision and dizziness.  All were common side effects of the Bisoprolol and so the registrar suggested a switch to Amiodarone.

For the uninitiated, Amiodarone is a very effective anti-arrhythmic agent with a number of horrendous side effects over time – several of which can be life-changing or even fatal.  It causes fibrosis of the lungs, damage to the liver and thyroid glands, damage to eyesight, discoloration and photo-sensitivity of the skin and, according to one recent study, an increased risk of cancer. It tends to be used for elderly patients in whom the side effects are deemed to have a lesser impact (or, to put it bluntly, they’re going to die soon anyway so the reduction in life expectancy is less significant).  Why a cardiac registrar would suggest its use in an otherwise healthy woman of 57 years when less dangerous beta blockers hadn’t even been fully evaluated is beyond comprehension (especially when the patient is a medically qualified, highly intelligent woman who knew exactly what the registrar was talking about).

That’s a bit harsh I can hear you say. Yes it is. At the time, I had no idea how stupid the suggestion was at the time, that knowledge came later, so my criticism has the benefit of hindsight. The cardiology consultants did agree that it was stupid though. It isn’t just my ill-informed opinion.

That same afternoon, Ann was taken down to ‘the Lab’ (otherwise known as the Cath Lab – Cath short for Catheter – the Electrophysiology Lab, or the EP Lab – effectively the electrophysiologists’ operating theatre) for her electrophysiology study with one of the electrophysiology consultants who we shall call Dr B.  We will be hearing an awful lot about Dr B over the coming months.  During the procedure, Ann discussed the possible change to Amiodarone and fortunately, Dr B immediately dismissed it as completely inappropriate.

Entry to Ann’s heart for the EP study was made via the femoral vein in her thigh.  Attempts were made to reproduce the arrhythmias without success and no aberrant signals of any kind were found in the atria – which, we understood, suggested that the problem was ventricular (consistent with what had been said in the ED).  In that nothing could be ablated (burned away), it seemed that the arrhythmia would have to be managed by drugs alone but in terms of future options for treatment, we were told nothing at the time.

The next day, Friday, Ann’s Bisopralol dose was reduced to 1.25mg because of the slow heartbeat and other side effects.  Her heartbeat recovered to around 50bpm.

Later that day, we both finally had the opportunity to talk a consultant and put questions to him – but only after repeated requests.  The difficulty here is that the electrophysiology consultants do not do ward rounds. Yes, seriously, the EP consultants rarely put in an appearance on the wards and so the arrhythmia patients have very little contact with their physicians. If you are at risk of a heart attack (i.e. you have coronary artery disease) you will probably see your consultant every day.  If you are at risk of cardiac arrest (you suffer from arrhythmia) you may not see your consultant for days at a time. The ward rounds are done by the interventionists (the stent guys) and, with respect, they don’t actually know very much about the dark art of electrophysiology (and that is their expression, not mine). So, Ann had finally managed to get an interventionist consultant to her bedside.

Dr C was pleasant, polite and helpful. He told us that the failure to stimulate arrhythmia during the EP study was a very good sign.  He also stated that the beta blockers had the arrhythmia under control – which we would learn wasn’t true then and still wouldn’t be true five months later.

He explained, finally, that the cardiac MRI had shown that Ann’s heart was structurally sound.  He said that the only issue was some “dodgy wiring” that may have been the result of unknown causes such as prolonged stress (the untold first half of the story). The “only issue” part of that advice also turned out to be completely untrue. The electrical issue was not the only problem.  There was something else that the medical team had missed altogether – because they had neglected to perform the angiogram, even though Ann’s family medical history suggested that it was essential.

Anyway, at the time, the news seemed to be very good indeed.  Ann was told to take a month off work and then gradually return to her normal life – including her regular gym regime etc.  She was told to expect to make a full recovery and not be seen again in the Cardiology Department. We were thrilled.

Sadly, Dr C couldn’t possibly have been more wrong. Everything he told us turned out to be the precise opposite of the truth.

So, to recap, we were told:

  • a) That there was scar tissue in Ann’s heart. There wasn’t.
  • b) That Amiodarone would be an appropriate drug to treat her arrhythmia. It wasn’t.
  • c) That the Bisoprolol had the arrhythmia under control. It didn’t.
  • d) That Ann’s only issue was ‘dodgy wiring’. It wasn’t.

The following day, Ann was discharged.  The only problem apparent at the time was a very stiff and painful right arm resulting from the fact that her cannula had been left in the same site for her entire 9 day stay in hospital (whereas it should be relocated at least every 3 days) and it hadn’t been flushed often enough.

All in all, the experience did not inspire confidence. However, all I cared about just then was that Ann was coming home and would soon be well again. Life would soon be back to normal.

On the way home, I even noticed the pretty countryside.

Ann rested for much of the following week.  I stayed off work for the most part and continued with the daily chores that I had taken on whilst Ann was in hospital. I managed not to destroy any clothes in the washing machine and even became passably competent at ironing.

Exactly a week after her discharge, Ann experienced two major episodes of what appeared to be ischaemic pain (acute central chest pain radiating towards the left shoulder) and racing heartbeat whilst at rest – about 90 mins apart. On both occasions, she was close to losing consciousness and the level of pain was significantly worse than anything she had experienced previously.

We were very concerned of course but you need to bear in mind that our actions at this time were governed by the fact that we had just been assured that Ann had a healthy heart and that her arrhythmia was under control. This early in the story, we still believed most of what we were told. Rather than dial 999 therefore, we telephoned Ward 28 for advice.  We were told they were much too busy and asked us to call back later.  We made several further calls to the ward as requested but none of them were answered.

It is worth saying that over many months, less than 5% of our calls to any part of the cardiology department were ever answered. Some of those were desperately urgent and were made to an emergency number we would later be provided with.  That emergency number was never answered though we had reason to call it many times.

This time, we simply gave up and planned to consult our GP after the weekend.

The next day, Sunday 31st May 2015, Ann seemed much better and so we planned to visit the Waitrose store in Willerby to do a bit of shopping.  As we approached the store, we realised that we were only half a mile from Castle Hill and decided on the spur of the moment to drop into Ward 28 to ask for the advice that we had failed to access the previous evening via the telephone. It would only take ten minutes.

Whilst it was clearly out of the ordinary for a patient simply to turn up like this, we were seen initially by a registrar in the day room.  Ann gave a brief history and as the pain she had experienced seemed to be ischaemic in origin, she was asked about her family history – just as she had been when first admitted on May 15th.  This, just as before, included the fact that her parents had both suffered MIs (myocardial infarctions or heart attacks) in their 50s and 60s.

We were told not to leave under any circumstances and the registrar went to fetch the consultant, Dr D. Dr D, it turned out, was dealing with an emergency case and we ended up waiting five hours to see her – which was fine, we only wanted a bit of advice after all and others needed Dr D far more than we did.

Eventually, Ann repeated her story about the pain and almost passing out and the history and Dr D said that she was immediately re-admitting Ann based on a strong suspicion of a coronary artery issue that had been completely missed on the first admission because the doctors had failed to carry out an angiogram.  The parental history alone, she said, should have been reason enough for an angiogram to be carried out as a matter of course.

The shopping would have to wait. I went home to dig the pyjamas out of the ironing basket and repack Ann’s bag.

Life would not return to normal after all.

Straight to Chapter Three

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