So Ann arrived home at last on Tuesday 1st September 2015. She was still in terrible pain from the haematoma. Over the difficult days that followed, she also experienced a number of arrhythmia episodes and what she believed were at least two episodes of anti-tachy pacing by the ICD.
It was pretty clear that Ann was considerably less well than she had been following her previous discharge. It seemed that every time she was admitted, she was discharged in worse condition.
On the Saturday evening, Ann shouted to me in extreme distress saying that she was going into VT again. She was lying on the sofa in the living room as usual. I was preparing a meal in the kitchen. I hadn’t even reached her just a few yards away when she screamed at the top of her voice.
The ICD defibrillator had shocked her!
For this to happen, the ICD must have attempted anti-tachy pacing four times and each time, it had failed to correct the VT.
I immediately called the emergency number on Ann’s ICD card (the CMU nurses station at Castle we later established.).
It wasn’t answered. It just rang and rang.
We would have reason to call the number many times. The emergency number was never answered.
I therefore called Ward 28 and, thank heavens, the call was answered by senior nurse, Nurse C (the shining star I have talked about previously). I quickly explained that Ann had been shocked and was very unwell. I said that I would be driving her straight to the ward.
Nurse C explained that we would have go via the ED and I responded saying that I had no intention of doing anything of the sort given the way Ann had been treated there at her recent visit but that I didn’t need to anyway because Dr D had arranged for Ann to be on the direct admissions list.
Nurse C asked us to wait whilst she checked and then came back on the line and said it was OK for us to come straight to Castle Hill. Thank God! She would arrange for a wheelchair to be left in the entrance lobby.
The 20 minute drive was a very scary one given that the ICD could shock Ann again at any time but we arrived without further incident, pulled straight into the ambulance bay and the wheelchair was exactly where it was supposed to be.
Nurse C soon settled Ann back into a bed before she finished her shift.
Ann had managed to be away from the cardiac unit for only four days.
The following morning, Sunday, the defibrillator shocked Ann again. Being shocked with 800 volts straight into your heart (more than three times what you would get if you stuck your fingers in a UK plug socket) is scary enough but knowing that it is only happening to stop you dying is even worse.
Worse still, this time the VT returned soon after the shock and Ann had to be chemically cardioverted again. Clearly, the beta blockers weren’t even close to controlling the tachycardia (which of course had been evident for some time – it had simply been ignored).
One of the registrars again suggested oral Amiodarone in lieu of the beta blockers as a long term treatment. I can only assume he hadn’t read past the letter A in the formulary (the official list of prescribable medications) as there were many other options available further down the alphabet which wouldn’t destroy Ann’s liver, lungs and eyesight.
Ann was struggling to stay awake. She was utterly exhausted but now more than ever, terrified to go to sleep – because the VT was still tending to happen when Ann was at her most relaxed. She was terribly scared and unable to be alone. Our daughter and I took turns to be at her bedside all day.
The nursing staff finally managed to get a cannula into Ann’s scarred and collapsed veins at around midnight when they administered a cocktail of urgently needed drugs including diazepam to help her relax and more emergency amiodarone to prevent further shocks.
In the morning, Ann was still experiencing lots of ectopic beats as well as tingling in both hands (presumably caused by lack of perfusion as a result of the arrhythmia).
Dr K paid Ann a visit. She was generous with her time once again and a lot of ground was covered. First, she apologised for the post-operative pain and shocks. She and Ann discussed possible causes and Dr K suggested that a possible over-excretion of electrolyte metals, principally magnesium and potassium, may be to blame. IV infusions of both were given and instructions issued to closely monitor serum electrolyte levels. A 24 hour urine collection was ordered to check electrolyte excretion.
There was also discussion of a potential further session of electrophysiology study with both Dr K and Dr B (the other electrophysiologist we met earlier) in attendance. Dr K said there was a 60% chance of success. This completely conflicted with the 10% chance Dr K had reported when this was discussed prior to the implant surgery.
The six-fold increase in the likelihood of success was never explained. I’m afraid that I believe that the chance of success was minimised when it suited the argument in favour of an ICD, and maximised when it suited the electrophysiologists to be optimistic. The chances of success couldn’t actually have changed in the fortnight between the two discussions.
The further EP study never materialised anyway.
Dr K also said that she would arrange a treadmill test which would hopefully give Ann some confidence that she could undertake some physical activity without experiencing further symptoms.
Fortunately, Dr K rejected out of hand the repeated suggestion of giving Ann long term oral Amiodarone (as Dr B had done earlier). Instead, the Bisoprolol was titrated up to the maximum dose of 10mg as Ann appeared to have developed a tolerance to it (and the ICD was now there to prevent bradycardia) and there was the first mention of a possible switch to a Class 3 anti-arrhythmia drug instead if the increased Bisoprolol dose didn’t do the trick.
The next day, Tuesday 8th September, the nursing staff told Ann that her heartbeat was completely normal but Ann knew that wasn’t true. She could feel that she was still experiencing arrhythmia. Nonetheless, she was told that there had been no dangerous arrhythmias for 36 hours.
There was uncertainty among the staff about whether Ann was going for further EP studies. The staff came in to check whether a cannula was in place in readiness for being taken down to the lab but in the event, there was no EP study.
Dr L was on ward rounds so nothing of value was learned.
I am going to indulge in a minor rant at this point by way of explanation of the statement above.
Dr L has a nickname amongst the Castle Hill cardiology staff. I cannot tell you what it is because it is a play on his real surname and so to do so would identify him. What I can say that its meaning is that he is not competent. Dr L is an interventionist and he regards electrophysiologists with open contempt. He is also a narcissist who likes to strut like a peacock on ward rounds with a gaggle of sycophantic medical students or F1s in tow, telling them how interventionists ‘don’t take any notice of all this electrical mumbo-jumbo’. Well, Dr L certainly doesn’t take any notice and to me, that makes him not just an idiot, but a real danger to patients. How in God’s name someone like him ever rose to consultant level in a cardiology department beggars belief.
Rant over (for now).
The promised 24 hour urine collection didn’t happen.
During the day, the discharge rate from the ward suddenly increased and post-op patients were now being sent to a different ward. Ann suspected that an HAI was present in the ward and Dr L did nothing to dispel that impression when he said that he wanted Ann discharged as soon as possible so that she “didn’t pick up anything nasty.”
That night, Nurse C came back on duty. She checked the telemetry data and informed Ann that she had in fact gone into “Amber zone ATP” several times over the last couple of days. Ann had been correct about what she was feeling and the staff had not been telling the truth about her heart rhythm.
I don’t doubt of course that they were trying to avoid causing anxiety but they in fact achieved the exact opposite because Ann knew she was being lied to.
On the Wednesday, Ann experienced two sustained VT episodes between 2.00 and 3.00am which she slept through with another at 5.15am which woke her. All were anti-tachy paced out by the ICD. We were told that the ICD had in fact paced Ann down on a number of occasions.
When Ann asked about the treadmill test, she was told that there was nothing in the notes about one being required. The haematoma pain was still present and Ann was extremely anxious as a result of her continued unstable condition.
Ann requested a further discussion with Dr K but she wasn’t in.
The urine collection was started.
Neither of the EP consultants were around on the Thursday but Ann had a long conversation with one of the EP registrars and one of pacing technicians.
She was told that she would be discharged the following day, despite the continued arrhythmia. It seemed insane.
There were several further ventricular tachycardia episodes over that night with the ICD performing further anti-tachy pacing. Ann was becoming extremely distressed at the lack of progress in getting the arrhythmia under control and spent much of time quietly crying. One of the nurses from CMU sat with Ann and consoled her during much the night. It was an extraordinary act of kindness.
On Friday, there was still some doubt about whether the treadmill test would happen as it was discovered that the request form had not been processed correctly but eventually, the test was arranged. Ann managed 9 of the required 10 minutes. There was no induced VT and only a few ectopics. Ann’s BP returned to 127/70 after 5 mins so she was judged to have passed the test.
However, later, after Dr K reviewed the telemetry records, Ann’s discharge was cancelled again. At last, the decision was taken to abandon the Bisoprolol and start instead on a new anti-arrhythmia drug, Sotalol (a class III drug from the same group as Amiodarone but without the horrendous side effects).
The next day, Saturday 12th September, Ann was dizzy on waking and her legs were aching after the exercise of the treadmill stress test. The pain in her left breast had become much worse and there was increased swelling all down Ann’s left side once again – presumably also as a result of the activity of the treadmill test but despite Ann complaining of renewed pain, none of the staff bothered to examine the wound or the haematoma – just as before. Lessons had not been learned.
Ann was started on the Sotalol at 40mg b.d. but told it might be titrated up once she became used to the side effects.
Dinner was inedible and Ann was in too much pain anyway so she didn’t eat anything.
A doctor finally came to examine Ann at 11.00pm. He said the bruising was really coming out on Ann’s side and back now. He told her that she would need to stay on regular pain killers for some time as the haematoma could take weeks to disperse. However, there was still no sign of a raised temperature so it appeared that the risk of infection had passed.
The next day, Sunday, Ann’s heartbeat felt very irregular on waking but otherwise, she was feeling a little more stable. There was a feeling of nausea whenever she stood but it was assumed that this was a side effect of the Sotalol kicking in. These drugs take a while to ‘load’. That is to say that it takes a few days to build up the level of the drug in the bloodstream. With anti-arrhythmia drugs, there are often some fairly unpleasant side effects initially but as the body adapts to the new drug, these often subside over time.
Dr M, then the clinical lead on cardiology, did the ward rounds and said that subject to Dr K’s agreement, Ann could go home the next day.
Ann had a very unsettled night with ATP waking her up again. This had become something of an established pattern with the arrhythmia still tending to happen either as Ann was going to sleep or already asleep. Ann’s fear of sleeping was still a problem.
On the Monday, she spent an hour talking to the specialist ‘defib nurse’, Nurse K. She had been introduced to Ann by the kind CMU nurse who had sat through the night with Ann a couple of nights earlier. Ann found the discussion very helpful and so Nurse K also undertook to put Ann in touch with another specialist nurse, the ‘arrhythmia nurse’, Nurse N. Nurse N was to become an important support to Ann as the saga continued.
Ann was discharged early that evening after the usual 12 hour wait for the pharmacy to issue the medication. She had now spent 37 nights in hospital. Now, she had the ICD, and a new drug which should manage the arrhythmia. Surely, she had reached the end of the hospitalisation.
Not a chance.
This time Ann managed 5 days at home before she was on her way back to hospital.
By now, our normal life was becoming a distant memory. Normality was four months in the past and it seemed like much longer. Ann was spending more time in hospital than at home. My appearances at work were few and far between and despite the heroic efforts of my colleagues, the consequences of my absence were now having a serious effect on our business.
My days were an endless stream of hospital visits, punctuated with laundry, shopping and of course, keeping friends and family informed of Ann’s progress. The grass still grew and needed cutting, the bills still needed to be paid, the cat still expected to be fed. Somehow, these mundane everyday tasks seemed so much more difficult. My days were stressful. Ann’s days were truly terrible – full of boredom, frustration and pain.
So, it was devastating when once more, it became clear that she should never have been discharged and would soon be back at Castle Hill.
That realisation came late afternoon/early evening, on Saturday 19th September when Ann once again experienced severe arrhythmia and dizziness. We considered driving to Castle Hill but we felt the risk of a defibrillator shock was too great and so we called an ambulance as we had been advised. My daughter accompanied Ann in the ambulance and I followed in the car a little later. It is strange looking back that I chose not to travel with her. Was I becoming blasé about the whole thing or was it that I just couldn’t cope with another blue light ambulance trip? I don’t really know. For whatever reason, I stayed behind and did the by now familiar packing in readiness for yet another re-admission to Cardiology.
Ann had two further VT episodes in the ambulance which were paced out relatively quickly. Her BP was 186/110 en route.
I arrived in resus around 7.00pm. Ann and Veruka reported that the ED consultant had been dismissive about the seriousness of Ann’s situation and had suggested that her condition was the result of anxiety! By the time Ann had arrived at the ED, her heartbeat had settled to a paced 60 beats per minute so she was no longer displaying the worrying symptoms that led to the 999 call. My daughter was absolutely furious that once again, Ann was experiencing the same attitude that preceded her cardiac arrest.
Our confidence wasn’t increased when shortly after, a young nurse came to take bloods and succeeded in removing the pressure cuff without first closing the cannula and so sprayed blood all over the cubicle.
A second serious arrhythmia episode began at around 10.00pm and lasted 45-50 minutes. Ann’s heart rate shot up to 115 to 125 beats per minute with a peak rate recorded on the monitor at 173BPM. Her blood pressure reached 173/98 during the episode. Oddly, the ICD didn’t intervene.
The A&E consultant experienced a very sudden if belated shift in attitude. Clearly, anxiety had nothing whatsoever to do with what was happening. The consultant spent most of the next few hours hiding from us.
During the episode, we pointed out that Ann had yet to take her evening dose of Sotalol and suggested that it might be wise to administer it. Ann’s heart rate spontaneously returned to its usual paced 60 bpm around 20 minutes after she took the tablet.
The consultant then came back to tell us that he had spoken to cardiology and it had been agreed that Ann would be kept in for observation and that the cardio reg’ would see her in the morning. He also said that Ann’s serum potassium level was extremely low. I explained that this was becoming a recurring theme and questioned why no-one chose to investigate why. The consultant simply walked away without answering the question and resumed his hiding.
A little later, following the decision to admit Ann to AMU/AAU, the medical register came through to see her. He was a really pleasant guy. He explained that her potassium was way down at 2.6. Ann told him that it had been measured at 4.7 just a few days earlier (before her recent discharge). The registrar ordered an immediate IV potassium infusion (500ml over 2 hours) which was started at around 11.30pm – which was the right thing to do given that Sotalol can be extremely dangerous when taken with low potassium levels.
Around midnight, as Ann was now stabilised, I decided to head home and give her a chance to get some sleep. I went over to the desk in resus and had a very pleasant short chat with the medical registrar who was now working at a computer. He said he was doing some online research into possible reasons for Ann’s worrying blood results. He explained that it wasn’t just the potassium which was causing concern, but also the calcium and other levels. I asked if they had tested for magnesium levels as Castle Hill had seen fit to give magnesium infusions previously. He said that no, they hadn’t but he thanked me for the suggestion and said that it may be the magnesium that was pulling down the potassium so he would re-run the bloods and include a magnesium in the new test.
Ann recalls that further bloods were taken in resus shortly after I left. She also received a magnesium infusion after the potassium.
Ann was moved through to AMU at around 2.30am on Sunday 20th September. Later in the morning, she again overheard the doctors discussing her. They repeated that her “bloods are all over the place”.
Soon after, the cardiology registrar arrived and began by telling Ann that all her bloods were “fine”. Ann explained what had happened the previous evening but the registrar was insistent. The blood results were normal! How could that be?
Ann also recalls asking to go to the toilet that morning. She was told that she couldn’t because she had to remain on a monitor at all times – so she would have to use a bedpan.
Ann was transferred to Castle Hill ward 28 around 2.00pm. The transport provided didn’t have a cardiac monitor. Given that Ann wasn’t allowed to remove her monitor for the two minutes it would take to go to the toilet, a transfer to Castle Hill without a monitor seemed rather ridiculous – and risky. The driver initially refused to take the risk of moving Ann without a monitor attached. In the end however, the staff insisted that he take Ann without a monitor and eventually, he relented.
It was an avoidable and totally unnecessary risk.
When Ann nonetheless arrived safely at Castle Hill, she spoke to senior Nurse C and raised the issue of the conflicting information about the blood results. Nurse C reported that there was only one set of results, taken at 8.30pm – which showed a potassium level of 3.9. There was no sign of the 2.6 result and as for the second test, it wasn’t there at all.
It would emerge many months later that the only possible explanation was that Ann had received someone else’s blood results (which is why they didn’t appear in her records). Her serum electrolyte levels were never at the low levels reported. It was bad enough that Ann received 2 infusions that weren’t necessary but someone else presumably didn’t get the infusions they desperately needed. I can only hope the consequences weren’t serious.
Once again, the Hull Royal ED had demonstrated its life-endangering incompetence.
The following morning, Monday, one of the pacing technicians visited Ann and downloaded the telemetry data from the ICD. He said that everything was very encouraging! The data reported that Ann’s heart rate had been consistently between 60 and 80 bpm and that there had been no VT. Given that 36 hours earlier, we knew for a fact that Ann’s heart had been in VT at a peak rate of 173 beats per minute, this simply added further confusion into the mix.
It didn’t make any sense at all. Ann’s arrhythmia was caused by anxiety – then it wasn’t. Ann’s electrolyte levels were dangerously low – then they weren’t. Ann had dangerous tachycardia – then it had never happened. It felt like the whole world was going completely mad!
The technician also mentioned that the signal from one of the leads was rather weak and that he was switching off the atrial wire altogether whilst Ann was in hospital as it had been pacing upwards too sensitively – increasing her heart rate even when Ann was just moving in bed during the night.
This news completely contradicted what Dr K had told us before the implant. She had said that the device would be set for the atrial wire only to prevent the heart rate falling below 60bpm (because beta blockers would suppress below this) but would allow sinus node to naturally regulate the heart rate above 60bpm so that Ann could resume her full exercise programme.
There wasn’t supposed to be any upwards pacing at all.
Later that day, the registrar on duty contradicted the technician saying that the atrial wire must still be on because there was nothing in the notes to say that it had been switched off. A senior nurse present supported Ann’s assertion that the atrial wire had indeed been switched off.
Nobody even bothered to re-check the device to establish which was true.
It was like we were in a lunatic asylum. Nothing but confusion and chaos.
Shortly afterwards, the registrar returned and in a short conversation mentioned “By the way, your ventricular lead is detached and the implant surgery will have to be repeated”!! Ann was informed that Dr K would be on holiday and so Dr C would be performing the new procedure.
“BY THE WAY!!!”
For God’s sake!
What is it about doctors that makes them completely incapable of understanding that news like this is utterly devastating and needs to be delivered with compassion and sensitivity? Do these idiots they have part of their brains removed at medical school?
The ‘weak signal’ in the ventricular lead was in fact no signal at all. Little wonder that the ICD didn’t record the VT or intervene. The atrial wire was picking up the atrial pacing rate of 60BPM but the ventricular wire couldn’t detect the ventricular tachycardia at 173BPM! So, one lead was detached altogether (and flapping around inside Ann’s heart, potentially damaging the inside of the heart) and the other was now switched off, or possibly not. Ann also had potentially dangerous electrolyte levels, or possibly not.
Basically, the doctors didn’t have a bloody clue what was going on.
And Ann was now completely unprotected by the device so her life was again very much at risk.
She was utterly distraught at the news that the surgery had to be repeated and angry at the disgraceful way in which the news had been delivered. To make matters worse still, was now suffering increased confusion and memory loss as a side effect of the Sotalol and so she was less well equipped to cope with this news anyway. She was inconsolable.
Things couldn’t possibly get much worse.
Oh yes they could.
What happened next would ruin the rest of Ann’s life.
Go straight to Chapter Seven