I didn’t get a lot of sleep. How could I when I knew that Ann was at risk of another arrest?
As Ann had been taken to Castle Hill by ambulance once again from Hull Royal, I went numbly through the now familiar routine of packing Ann’s bag for hospital and set off for the equally familiar cross-country drive to Castle Hill and arrived in time for ward rounds.
As I have already explained, the electrophysiologists choose not to do ward rounds. Whether that is because they are simply too busy or feel it is beneath them or for some other reason I do not know. I do know that patients suffer as a result – if only insofar as they receive inaccurate and misleading information on a regular basis. This was demonstrated once again that day.
It was Professor J’s turn to do the rounds. He told Ann that they would attempt another electrophysiology study in the next 24 hours. Like so many assurances Ann had been given on previous visits, this one also turned out to be untrue. The EP study never materialised.
He and Ann also discussed whether a hypersensitivity reaction to the nickel in the stent might explain some of the chest pain that Ann was still experiencing. The Professor dismissed that stating that there was no such thing as a metal allergy. That too was incorrect, as would subsequently be demonstrated.
Then one of the registrars suggested to Professor J that Ann’s arrhythmia looked rather more like atrial flutter than ventricular tachycardia. Having examined the ECGs, the Professor agreed, telling Ann that this was very good news because the electrical signal causing flutter was rather circular in nature and it was very easy to ablate a part of the circular path and eliminate the arrhythmia altogether. We were obviously delighted at such a positive new diagnosis and the prospect of a complete cure.
Any hope was very short-lived however. It turned out that the Professor’s diagnosis was also utterly wrong.
Three out of three incorrect. The Professor wasn’t having a good day.
Later that day, Ann met Dr K, the second consultant electrophysiologist on the Castle Hill team during a rare appearance on the ward. She quickly learned that Dr K is a plain-speaking medic that isn’t afraid to say what she thinks. Later, we would see the negative side of that bluntness, but for now, Ann found it rather refreshing. At least Dr K didn’t speak to her like she was five years old as many of her colleagues did.
Ann told her what Professor J had said. Dr K said “That is complete bollocks! I’m the electrophysiology expert round here and I know ventricular tachycardia when I see it!” Like I said, Dr K doesn’t mince her words.
So much for the quick fix. The Professor’s visit, like so many of the other ward rounds before it, had been a complete and misleading waste of time.
You will recall that Ann had stopped taking the Bisoprolol the day before the cardiac arrest in preparation for another stress echo with Dr E, and possibly a further angiogram. Given that Ann had arrested, the stress echo was skipped and Ann went straight to the repeat angiogram later the same day. This time, the catheter was introduced via the femoral artery to eliminate any possibility of further damage to the arm.
The angio confirmed that there was no re-stenosis of the stent. The cardiac circulation was still A1. Dr E had been right all along, which was very good but unsurprising news.
Suspicion then fell on the Ticagrelor anti-platelet medication as the most likely cause of the chest pain. It was therefore belatedly replaced with Clopidigrel and there was a noticeable reduction in Ann’s chest pain over the following days.
After a busy day with no further serious VT episodes, Ann was moved from CMU to a 4 bed bay on Ward 28.
There, Ann had a sleepless night. A patient in the bay (affectionately referred to by the staff as Mad Betty) was suffering from dementia and had been shouting all night. Ann had to get out of bed several times to calm her down as the nursing staff largely ignored her. Every time Ann did manage to get to sleep, the staff woke her to ask how she was because they could see severe arrhythmia on the cardiac monitors. This would become a real concern for Ann. For some strange reason, she seemed more prone to the VT when she was at her most relaxed and so falling asleep was often the trigger for a sustained VT episode. Eventually, she would become scared of surrendering to sleep.
In the morning, Ann was told that she would be going for the stress echo test. In the afternoon, the staff finally realised that the procedure had already been made completely unnecessary by the angiogram and so cancelled it.
The possibility of an Implantable Cardioverter Defibrillator (ICD) was mentioned for the first time by one of the nurses as there had been little progress in controlling the arrhythmia. I had never heard of an ICD and had no idea what it was. We quickly learned that it was both a pacemaker and a defibrillator, implanted into the chest and connected by wires to the interior of the heart. It sounded like something out of science fiction.
If Ann needed an ICD, then the medics weren’t going to be able to make Ann well. Only 48 hours before, they had told us that she would be cured. What the hell was going on?
Looking back, it is hard to understand why the Castle Hill team didn’t try alternative drug therapies when they had clear evidence that the Bisoprolol was not controlling the arrhythmia. No other anti-arrhythmia drugs had been tried. It would later be discovered that other drugs would indeed control Ann’s arrhythmia much more effectively than the Bisoprolol but at this stage, there had been no attempt to see if alternatives would manage the condition.
After a second sleepless night on the Ward 28 bay, Ann was at her wit’s end and put in a request to be moved to a single room. She also asked for further news on plans for her treatment.
One of the cardiac nurses went to see Dr B (the first electrophysiologist) on Ann’s behalf and he was able to tell her that the decision had now been taken that the ICD implant was the best course of action and that Ann was now on the ‘Critical List’ for the implant surgery.
At 12.30 that day, Ann and I met with the second electrophysiologist, Dr K at our request to learn more about the ICD implant. She gave us the best part of an hour of her time (probably more than all other conversations with doctors to date added together). Her plain speaking was like a breath of fresh air and she talked to Ann as an equal rather than down to her, including plenty of medical detail in recognition of Ann’s own medical training.
It is so sad that these helpful conversations were the exception rather than the rule. We had found that so many doctors ignored Ann’s intelligence and medical knowledge and spoke in a condescending manner. I understand of course that doctors have to explain concepts to people with no medical knowledge or limited understanding but 30 seconds in Ann’s company was enough for anyone to see that she is bright, articulate and knowledgeable. The endemic arrogance and pomposity of so many of the doctors never ceased to amaze me.
Before I outline what was discussed with Dr K, it is time for another medical detour. Last time, we looked at the cardiac circulation (the plumbing). This time, we need to take a quick look at the electrical system and so below, I offer a layman’s rather simplified version of the heart’s wiring which should be read alongside the diagram below. Please forgive me if I sound like one of those condescending doctors.
So, the electrical impulses that control the beating of the heart originate from the Sinus Node (also known – mainly in the USA I think – as the Sinoatrial Node). This is best described at the heart’s built-in natural pacemaker. This emits electrical impulses which control the rate at which our hearts beat – speeding up if we are exercising and slowing down when we are at rest.
This signal spreads through the walls of the atria (the top chambers of the heart) which then contract and in so doing, create the first part of a single heartbeat (the ba of the ba-bam). The signal then passes through another very special point called that Atrioventricular Node (or AV Node) which, as the name suggests, lies between the atria and the ventricles. By some remarkable mechanism I don’t begin to understand, this slows down the signal before it arrives at the ventricles. If it did not, the ventricles would contract at the same time as the atria and there would be no pumping action. So, having been slowed down by the AV Node, the signal arrives into the ventricles, where its pathway divides into two branches – known as the left and right bundle branches. From the bundle branches, the signal is distributed throughout the walls of the ventricles which causes the ventricles to contract – just a little later than the atria did. So, we get the ‘bam’ of the ‘ba-bam’. – the second half of the heartbeat.
OK, now those without medical training can hopefully make more sense of what Dr K is about to tell us.
Dr K explained that the fresh telemetry data (the ECGs) from the two recent ambulance trips had had proved extremely useful and had confirmed beyond doubt that arrhythmia was clearly ventricular rather than atrial and so the aberrant nerve signals causing it originated in the ventricles and so would almost certainly be impossible to ablate in an EP session. They could try, but the chances of success were less than 10% and significant damage to the heart could be caused by multiple ablation attempts. Her recommendation therefore was that the EP route was abandoned in favour of the ICD implant.
Dr K explained that, because Ann was ‘fairly skinny’ on the upper chest, she intended to carry out a rather unusual ‘deep implant’. That is to say, the device would be implanted behind the pectoral muscle wall, rather than subcutaneously in front of the pectoral muscles which is the more typical implant site. Not only would this be an aesthetically better solution (the ‘generator’ would not stick out) but it meant that the device and the leads entering Ann’s heart through the blood vessels in her chest would all lie in the same plane and so be more stable.
We didn’t know it at the time, but the consequences of choosing the deep implant would be catastrophic for Ann.
Dr K also said that the two-lead version of the implant would be used. The first wire, attached to the inner heart wall of the right atrium, would act as a traditional pacemaker and would take over from the sinus node to pace the upper chambers of the heart such that the rate would not fall below a set rate – probably 60 beats per minute. The reason for this is that the beta blockers could cause Ann’s heart to beat too slowly and so setting a minimum heart rate would allow the beta blocker dose to be increased without putting Ann in danger.
Above 60 beats per minute, the pacemaker would allow the sinus node to set the heart rate. In that way, Ann’s heart would speed up naturally when Ann was in the gym but when her heart tried to return to a rate of less than 60 bpm, the pacemaker would take over again and stop her heart from beating too slowly.
The second wire, attached to the inner wall of the right ventricle, would intervene in one of two ways. If Ann went into ventricular tachycardia, it would first take over pacing from the atrial wire (generating signals in the ventricles which would override the aberrant signals of the arrhythmia) but at the much faster tachycardia rate and then ‘slam on the brakes’ to try and slow the heart to a safe rate. Dr K described it as ABS braking for the heart. The correct cardiology term is ATP, or anti-tachy pacing (also called ramp pacing in the USA I believe).
If that failed a number of times, then the ICD would deliver a defibrillator shock to stop (depolarise) the heart and allow it to resume in sinus rhythm.
Dr K and Ann also discussed the use of a pressure dressing as Dr K explained that there was a high risk of bleeding due to the anti-clotting drugs that had been prescribed following the stent placement. In addition to the Clopidogrel anti-platelet medication and the soluble aspirin Ann was taking every morning to thin the blood, Ann was also receiving daily injections into her abdomen of Fragmin (a drug from the Heparin family) whilst she was in hospital. Together, the presence of these drugs in Ann’s system meant that she was at enormously increased risk of post-operative bleeding.
Indeed, there was a strong case to be made for withdrawing these drugs for a period (usually several days) before any surgery but this did not happen. The pressure dressing, Dr K explained, may be needed to prevent a very unpleasant haematoma. Ann had already demonstrated that she was capable of producing an impressive haematoma when her angioplasty had been carried out via the radial artery in her arm – and that had been when she wasn’t on the blood-thinning medication.
DR K was right. A pressure dressing was very much needed.
A lot of other ground was also covered and it is fair to say that the discussion brought us a lot of reassurance. One final reassurance was that, because the device case was believed to contain nickel, an allergy test would be carried out to establish whether Ann’s stated allergy to nickel was indeed ‘non-existent’.
Also that day, Mad Betty was moved out of the bay amid rumours that she had tested positive for MRSA.
The next day, Thursday 20th August, I was woken at 6.00am by a phone call from Ward 28 informing me that Ann had had a serious further episode of ventricular tachycardia and had been transferred back into CMU and asking me to get there as quickly as possible.
This was the first time they had called me to say that she was in danger and I was scared out of my wits! The scene played out in the bathroom a few days earlier, had nearly happened again – and still might happen.
When I got there less than an hour later, Ann was very poorly. They had had to administer a bolus of Amiodarone to stabilise her but she remained under observation back in CMU. These events reinforced the urgency of the implant procedure. They should have also told the medical team that Ann was on the wrong anti-arrhythmia drug.
That day, we learned that the allergy people at HRI had refused to come to Castle Hill to do the allergy test so the utterly insane decision had been made to take Ann, a seriously ill patient with a life-threatening condition, along with a full cardiac nursing team and all the portable monitoring and life-saving equipment by ambulance to Hull to enable someone there to stick a plaster on Ann’s back!
Mohammed had refused to come to the mountain so it had been decided to move the mountain, and most of the surrounding mountain range, to Mohammed. Crazy. Just plain crazy. I simply could not believe the regularity with which the Trust demonstrated the remarkable depth of its ineptitude.
The following day, Friday 21st August, we learned that – finally – a sensible decision had been made about the allergy test. Hull Royal would send a test kit in the post! Somebody had finally worked out that a first class postage stamp was cheaper than sending an entire cardiac support team by ambulance to Hull.
Thank heaven for small mercies!
Ann had endured another much interrupted light sleep, partly as a result of the activity in the ward bay but also because of Ann’s growing fear of going to sleep and laying herself open to another VT episode.
Dr K informed us that the operation would take place next Thursday 27th August. She had managed to obtain a coated ICD so the allergy test had become rather academic.
Ann’s serum magnesium levels were down despite the supplements she had been given whilst in hospital. No-one seemed interested in why that might be. Low potassium and magnesium levels are a contributory factor in arrhythmia, which is why they were being monitored. The problem seemed to be that no-one was actually taking any notice of the results.
On the Saturday, my adult son and daughter and I did a formal CPR training course so that in the event that Ann had another out-of-hospital cardiac arrest, we would be rather better prepared than I had been the first time around. If Ann did get into difficulty, it was just as likely to be in the company of Pugsley or Veruka and neither had any training so it seemed like a very sensible thing to do. If anyone reading this hasn’t been trained, please, please put aside an hour of your time to get the basic knowledge. I have now been in this situation twice, once for Ann of course and once for a complete stranger who collapsed in the street in York years before. I and his daughter managed to keep him alive (me on chest compressions, her on mouth-to-mouth) until the ambulance arrived on scene – so the value of this knowledge cannot be exaggerated.
One important thing we learned during this training (which seems to be little known) is that portable defibrillators talk to you and tell you what to do. Consequently, it is all but impossible to do the wrong thing in an emergency. I know that if I had been in a situation when I had to use a portable defib, I might have avoided it for fear of killing the patient. I don’t doubt that others would similarly shy away from using a defibrillator. If you find yourself in this situation, have no fear, the machine is smart and will guide you through it.
Whilst we were doing our CPR training, Ann was moved back to Bay 3 from CMU and was stable enough to be allowed a shower at last. She also learned that the general anaesthetics session scheduled for the 27th that included Ann’s operation had been cancelled by ‘the management’ because Dr B was on holiday.
Ann’s life would remain in danger because of a ‘management’ decision. The insanity continued. Dr K said there was nothing she could do. The same wasn’t true for me. I may a few phone calls.
The next day, Sunday 23rd August was our 35th Wedding Anniversary – the first we had spent mostly apart. The unit was grossly under-staffed. No doctors were sighted on the unit all day and even the morning tea trolley failed to turn up.
I had been doing some amateur research into magnesium serum levels and their effect on arrhythmia and had learned that both champagne and plain chocolate have high magnesium content. As it was our anniversary, I took both into the hospital and to my surprise, I was allowed to administer my rather unusual magnesium supplements not just to Ann but to all the patients in the bay. It was a welcome interlude of light relief in an otherwise awful situation.
On Monday, the operation was reinstated for Thursday 27th at 10.00am. Sense had prevailed. Perhaps my phone calls had made a difference. Ann was informed that she was likely to be discharged the following day.
Her magnesium levels were now improving finally. Must have been the champagne.
Tuesday came and Ann had the headache from hell, complete with shooting pains down her arms. Feeling awful. Dizzy, sick and coughing. Asleep most of day, she didn’t even wash or brush her teeth (which for a dentist, is pretty serious). Something was wrong. No-one seemed at all concenred.
An envelope arrived from Hull Royal. The allergy test plasters were put onto Ann’s back.
The nasty headache was still present on the Wednesday. Ann was awake from 3.30am. The allergy tests made Ann “want to tear my skin off”. Fortunately, the plaster came off that morning.
The tests showed that the so-called non-existent allergy to nickel was in fact very real. The Professor had been wrong. As well as a severe reaction to nickel, there was also a less severe reaction to cobalt – both of which were in the stent (see photo: Cobalt above, Nickel below)
Ward Sister B went to see Ann to discuss her traumatic experiences over the previous three months. As ever, Sister B was compassionate and understanding. An outstanding nurse who does a brilliant job in often very difficult circumstances. She leads a largely excellent specialist nursing team on CMU and Ward 28.
Ann was swabbed for MRSA (no doubt because of her contact with Mad Betty). If positive, it would affect Ann’s ability to practice dentistry. She never got the results. We assumed that the results were negative.
Thursday. Operation Day.
Ann didn’t get much sleep again. Another dementia sufferer had arrived in the same bay and had been causing havoc through the night.
She went down for the surgery on time and I stayed in the department, hanging around in the café, where I had become a well-known regular. Ann returned to the ward at around 12.30. She was groggy of course and attached to a saline drip.
And there was NO PRESSURE DRESSING. The wound in Ann’s chest had a completely standard dressing, despite the obvious risk that this presented.
Ann was in terrible pain and needed regular pain relief including morphine which did little to help. Senior Nurse C and Nurse D were on duty. Nurse C is an outstanding nurse. Experienced, knowledgeable, decisive and always supportive and helpful, Nurse C is the outstanding star of ward 28. I would prefer to name her so that she receives the credit which she is undoubtedly due, but it would be unfair to name some and not others. I may have to name everyone later. What Nurse D lacked in experience (which was a lot as she was new to cardiac nursing) she more than made up for in compassion. She was delightful. Ann had formed a close bond with both of them during earlier admissions. Having the two of them there after the operation was immensely reassuring. You know who you are ladies, thank you for your compassion.
As I have said, Ann eats a gluten free diet and as a result, there isn’t much choice on the hospital menu. In fact, the few available choices tend also to be dairy and electrolyte free too. In essence, the food available to Ann was almost nutrient free. So that day, I smuggled in a poached salmon and feta cheese salad to provide a bit of nutrition and fed it to her. She was unable to feed herself due to the pain caused by moving her arms.
When the night shift came on duty, Ann was told that she would have to ring the buzzer if she wanted pain relief. Ann insisted that pain relief was administered by default at intervals as she may not be able to reach the buzzer. An argument ensued, which Ann eventually won.
Ann only managed one hour sleep that night, partly due to the pain and partly due to the dementia patient in next bed so later the next day, she was transferred to her own room so she could finally get some rest. She was beyond exhaustion.
She was also taken down for x-ray to make sure the wires were correctly placed. All was apparently as it should be. The device was tested and working.
Ann complained about the level of pain and feeling of nausea. More morphine and anti-emetic were written up. None of the staff checked for a possible cause of the excessive pain. None of the staff looked at the operation wound site.
It was the first real indication we had that some of the staff were not taking Ann’s pain seriously. We formed the impression that they thought that Ann was being a bit over-dramatic. To some extent, that is understandable as patients would not normally experience the level of pain that Ann was enduring. On the other hand, it should have been a warning sign that something was not as it should be. That warning sign was ignored.
Given the high risk of a post-operative bleed and the fact that the hospital had elected not to withdraw the blood-thinning medication for a period prior to the procedure, the staff should have been on a higher state of vigilance in any event. Given that Ann had already experienced a horrible haematoma even without the blood-thinners should have made regular checks of the wound site even more of a priority. Given that no pressure dressing had been used either, they should have been watching the wound site like hawks.
But they didn’t even glance at it.
Saturday. Ann had a nose bleed and spangled vision on waking and was still in terrible pain. She was due to be discharged the same day.
The doctors had been to see her and the nurses were preparing her discharge letters but 48 hours after the surgery, no-one had yet bothered to look at the wound or the huge haematoma that had by now formed around it as a result of the blood-thinning medication and missing pressure dressing.
To make matters worse, the discharge medications had been incorrectly written up with Bisoprolol at 1.25mg instead of new level of 2.5mg (the dose had been increased following the operation as the ICD now protected Ann from the slow heartbeat the higher dose would cause).
The incompetence continued.
Ann pointed it out and the corrections were made but she was told that she would only be seen on the pacing clinic from this point so we had no idea how the meds would be reviewed, how often, or by whom. It was all very worrying.
At 4.00pm, Ann suffered an episode of non-sustained ventricular tachycardia. As it was mercifully brief, the ICD didn’t intervene. The nurse had placed the buzzer out of reach so Ann had to bang on her table for ten minutes with her one barely functional hand to get attention.
Eventually, she was heard by the senior nurse, who, when Ann explained about the VT said that it couldn’t have been VT because nothing had shown on the monitor. “I’m not wearing a bloody monitor!” Ann replied. “It’s my discharge day, you took it off!”
Incompetence at every turn. Enough was enough.
Ann refused to be discharged and insisted that she see a consultant. There was no way she was going to allow them to kick her out again until she had been examined properly.
Dr D (the very kind consultant who had re-admitted Ann before the angioplasty) duly arrived and immediately took a look at the wound and surrounding area.
She immediately cancelled the discharge.
She confirmed that there was a “massive haematoma” (her words not mine) which the entire medical team had failed to notice. Within minutes, Ann was put on powerful emergency intravenous antibiotics and intravenous painkillers. Dr D explained that there was a very real danger of infection developing in the wound and surrounding tissue. To her credit, Dr D kept a very close eye on Ann from this point and displayed genuine compassion towards her.
Had Ann not insisted on seeing her, she would simply have been sent home. She would not have received the treatment and God only knows what might have come to pass. A less stubborn patient with less knowledge would have been sent packing and placed at enormous risk. It was unforgivable.
Even with the treatment, the consequences for Ann of the haematoma would prove to be life-changing. We will find out much more about those consequences later in our story.
Sunday was a truly horrific day for Ann. Alternating IV morphine, paracetamol and oral codeine phosphate were administered in an attempt to make the pain bearable but with little success. Instead, the pain continued to escalate. The bruising had by now spread down left arm and was now past the elbow. The haematoma would eventually extend from her left elbow to her right shoulder.
Monday wasn’t much better. Ann was still not progressing as expected and still needed morphine on top of the paracetamol and codeine. She was starting to feel like a nuisance. Her dressing was changed to a transparent dressing that allowed her to take a shower but as yet, she was incapable of doing so. She was still experiencing feelings of nausea and so still needing anti-emetics.
Nonetheless, Dr D said that Ann could go home the following day if she had guaranteed 24/7 nursing care. I cancelled all plans I had for work for the foreseeable future so that I could bring her home.
That evening, Ann experienced her first episode of anti-tachy pacing by the ICD. It was the first time that the device had ‘woken up’ and intervened. On the one hand it was reassuring because it demonstrated that the device was indeed working. On the other, it meant that Ann would be discharged with the arrhythmia still not controlled by the drugs. You could be forgiven for thinking that alternative drugs should have been considered but Ann hadn’t even seen the electrophysiologists since leaving the Lab. There was no follow up from the doctors responsible for the implant and the arrhythmia medication.
So Tuesday was discharge day (again). The pain was unbearable. Ann felt like she would throw up each time she tried to move. A physiologist paid a visit but Ann felt that she had no concept of how much pain she was in and so she contributed little of value. However, the delightful Nurse J (another excellent member of the nursing staff) helped Ann to shower which seemed like a heaven-sent luxury after the past couple of weeks.
The haematoma in Ann’s left breast above the implant had hardened. Dr D said that Ann would need to keep a very close eye on it and if it got any worse at all, she must seek immediate medical attention but despite this, she would allow Ann to be discharged that afternoon as long as I didn’t leave her side.
With this in mind, Dr D said she would add Ann’s name to the ‘Direct Admissions List’ so she could return quickly to Castle Hill without passing again through the ED in Hull. Ann was delighted.
A means to avoid passing through the ED was a precious gift indeed.
The discharge letter sent to our GP didn’t even mention that Ann had been admitted following a cardiac arrest. It said she had been admitted with dizziness!
They had come close to killing her and they passed it off as a dizzy spell? Didn’t they think that our GP needed to know that Ann had suffered a cardiac arrest for goodness sake?!
Utterly beyond belief.
And so she came home at last. Ann had spent a further 16 nights in hospital, bringing her total to 28 nights.
Little did she know that she wasn’t yet half way to her eventual total.
Go straight to Chapter Six