Ann had spent 40 days and nights in hospital when she learned that the ICD implant had failed and would need to be repeated.
No-one questioned why the ventricular lead had displaced but we believed that it must be in some way connected to the haematoma. Surely, it seemed to us, if there was a “massive” haematoma affecting the pocket in which the device was implanted, the pocket was likely to become enlarged. When the haematoma was resorbed, the ICD would be in an oversized pocket and so would be free to move. That in turn could cause movement in the leads connected to it. Dr B would later acknowledge that this explanation was ‘plausible’. Indeed, he told us the ICD had moved.
Was what had happened to Ann unusual? Are haematomas a common occurrence in implant surgery? I didn’t know and so decided to do some research.
I discovered (from a study published in the Journal of Cardiology – so a relatively trustworthy publication) that the likelihood of pocket haematoma is just 2% for patients not receiving anticoagulation therapy or 4% if that therapy is discontinued prior to surgery. For patients like Ann taking Aspirin and Clopidogrel and having Fragmin injections, this risk rises to between 12 and 23%! Unsurprising therefore that the study also recommended that Fragmin use was discontinued 3 to 4 days before implantation and only reinstated 1 to 2 days after surgery. That hadn’t happened at Castle Hill. It further reported that a third of all patients in the study with haematomas required further surgery.
Ann didn’t just have a pocket haematoma. Hers was far more extensive and extended into the surrounding tissue and as far as her left arm and right shoulder and even across her back.
So a pocket haematoma should be rare (2 to 4%). A “massive” haematoma like Ann’s would be rarer still. Perhaps 1%. Ventricular lead displacement is also very rare. Early atrial lead displacement can be as high as 3% I discovered. Ventricular lead displacement however usually occurs in no more than 1% of patients.
So the odds of having both a post-operative haematoma and a ventricular lead displacement are pretty long. Two 1 in 100 chances means the odds of both together are 10,000:1 against. Either Ann had been extraordinarily unlucky, or something else was at play – the most obvious being that the implant procedure hadn’t been carried out appropriately.
There is little doubt in my mind that Castle Hill’s failures a) to discontinue the Fragmin injections and b) to fail to use a pressure dressing were the cause of Ann’s haematoma. Those failures may also have contributed to the lead displacement.
Be that as it may, the surgery had to be repeated.
On Tuesday 22nd September, Ann went for an anterior chest x-ray during the morning. In the afternoon, she went for the lateral chest x ray which they had forgotten to do in the morning. The x-rays would pinpoint the exact location of the ICD generator and what was happening with the loose lead. At least they would if anyone looked at them.
We expected to see Dr B that day to discuss the procedure but he didn’t show up – and Ann was very keen to discuss the procedure with him. He had handed over responsibility for the first procedure to Dr K because his experience of sub-pectoral implants was limited. Now, because Dr K was on holiday, he was about to repeat a sub-pectoral implant.
In the meantime, Ann was feeling very ill and didn’t eat. She was also despondent at this latest turn of events. I did my best to be positive for her, but there really wasn’t much to be positive about.
In the early hours of the next day, Wednesday, Ann experienced marked arrhythmia again. Now she didn’t have the protection of the ICD, the risk was so much greater and it only served to raise Ann’s anxiety levels.
At midday, the staff reported that Dr B still hadn’t yet looked at the x rays.
He didn’t show up again that day, so we never had the chance to discuss the procedure with him ahead of the surgery. Ann would go down to the Lab knowing very little about what was about to happen to her. All we were told was that the procedure would take around 45 minutes so in all, Ann would be away from the ward for no more than an hour and a half.
Thursday 24th September: Operation day. Again. I came in early to be with her before and after the procedure.
Ann went down for surgery at 10.20.
As I have said, she was expected to be in the Lab for no more than 90 minutes so I wandered down to the café for a coffee or two and to read a book to take my mind on what was happening to Ann. The first hour passed. So did another. I moved into the courtyard garden and wandered in circles. I was starting to get really worried. I had let the children know that their Mum had gone to the Lab and they were sending text messages at regular intervals asking whether she was back.
After a third hour had passed with no news from theatre, I knew that things hadn’t gone to plan. By now, I was wearing a hole in the floor pacing Ann’s room.
She didn’t return to the ward until 2.00pm – three hours and forty minutes after she had left. She was grey, in unbearable pain and on oxygen. She hadn’t needed oxygen the first time around. It was obvious that things were not as they should be.
The recovery nurse didn’t look much better. She too was pale, drawn and clearly distressed. I asked why it had taken so long. She said that Ann had been in recovery for a long time because they had experienced severe problems maintaining Ann’s blood pressure.
Ann’s recollection is that she was certain that her life was in danger because of the level of panic amongst the staff. She told me later that she had heard the nurses in the Lab say that her systolic blood pressure had dropped to 69! The recovery nurse had been in a complete flap. Ann heard her say (of Dr B) “Where the f*ck is he? I need him here now!”
Something must have gone terribly wrong but we were given no further information. Even the chaos in recovery didn’t explain why Ann was in the Lab for the thick end of four hours.
The recovery nurse told me that Ann had been given three doses of morphine when she came round – but she was still in utter agony. She was also concerned that Ann was displaying a reaction to the morphine – an obvious rash had developed around her cannula. She instructed the ward team to administer anti-histamines and to relocate the cannula. On the positive side, a pressure dressing had been used. Thank heaven for small mercies.
I asked to see Dr B to find out what had really happened in the Lab. The recovery nurse promised to pass on the request. If she did, it was ignored.
The instruction to administer anti-histamines was also ignored. The drugs were not written up. Yet another example of the dreadful communication endemic in the department. As it happens, the rash disappeared anyway as soon as the cannula was moved so the error had no consequences.
Approximately 20 minutes after the recovery staff had left, an F1 came to relocate the cannula in Ann’s arm. A blood pressure reading was taken at that time. It was just 98/59. So, the BP was still very low but the resulting action from the doctor was… nothing at all! In fact, the F1 started to leave having moved the cannula and left the BP cuff on the bed. Obviously, disconnecting the blood pressure monitoring for a patient with very low blood pressure was not the smartest move. I pointed this out and he sheepishly reattached it.
Later that day (at 7.10pm) Nurse M came in to the room to check the blood pressure again. She told Ann that she should be up and about and should be taking herself to the bathroom. Ann could barely move a finger, never mind get out of bed. Nurse M clearly thought Ann was making it up. I said that given the dramas in recovery, Nurse M was being ridiculous. She said she knew nothing of any drama in recovery and there was nothing in the notes about it. Either it wasn’t written up, or she simply hadn’t bothered to read the notes. (To be fair to Nurse M, it became clear later that it wasn’t written up).
She took the BP again. It was still just 98/53. Nurse M simply recorded it and behaved as if 98/53 was perfectly normal and proceeded to tell us in great detail all about her bad back before heading off to completely ignore the needs of other patients.
Most of the nurses on cardiology are absolutely wonderful. Kind, professional and always demonstrating compassion. Nurse M isn’t one of them.
On Friday morning, Ann evidently wasn’t well enough to send me her regular text message. I was obviously worried because I hadn’t heard from her and so I telephoned the ward. I was unfortunate enough to be passed on to Nurse M again. She said that my wife was “still refusing to get out of bed” but was otherwise “perfectly fine”. Nurse M’s empathy bypass was evidently still in full working order. She took some trouble to imply that Ann was being something of a drama queen and interrupted every time I tried to say anything. Deciding eventually that any conversation with Nurse M was profoundly pointless, I hung up.
That morning, under Nurse M’s care, Ann requested pain relief at 09.45. She didn’t get it until 11.50. As a result, Ann suffered two hours of the most terrible post-operative pain. Nurse M really was the last person Ann needed looking after her that week.
That same morning, Ann saw Dr B, who had taken the trouble to come in to see her on his day off. I wasn’t there, but our daughter was present throughout. Whether Dr B’s visit was a genuine kindness or because he knew what had gone wrong in theatre I will not speculate.
With reference to the drama in recovery, he said he didn’t know what all the fuss was about. He said that Ann’s systolic pressure had never gone below 100. He was obviously unaware that we already knew that it had been well below 100 in recovery, still below 100 half an hour after Ann’s return to the ward and furthermore, it was still below 100 five hours later.
He also explained that the ICD had “dropped” behind Ann’s pectoral muscles (no doubt due to pocket enlargement caused by the haematoma) and that he had struggled to find it – despite having anterior and lateral x-rays to tell him exactly where it was. As a result, he had needed to undertake extensive dissection of the chest muscles and so Ann could expect to be “extremely sore” for some time.
That turned out to be the understatement of the century!
In fact, he explained that he had had to “dissect and dissect and dissect” to reveal the ICD generator and that he had come close to asking for assistance because the procedure was so much more complicated than anticipated.
This account would completely contradict what the Trust would later say about the procedure and so what was said that day became rather important. Because I wasn’t there to verify Ann’s account, I would later email my daughter to get her version of events. She used the same words as Ann when quoting Dr B. The extract below is from her reply:
“It was the one and only time I met Doctor [B]. [which, given that our daughter probably visited the department around 50 times, says something about how often he appeared on the ward]
He said sorry that she may be more sore than expected due to the procedure being more complex than he anticipated, he said “I had to dissect and dissect and dissect”, and that it took much longer than planned as he struggled to locate the ICD and that half way through he considered calling in help but managed to do it.
He also had a quick look at Mum’s operation site.
In my opinion, he seemed nervous and concerned at how she was and seemed agitated when explaining how he had struggled and said more than once that it was more complicated than he first thought.”
We will find out much more about the serious and permanent damage caused by that extensive dissection later. We will probably never find out exactly what made the procedure so complicated.
Dr B would subsequently assert that the procedure took less than an hour and was routine. Furthermore, his notes of his visit that day recorded that he had told the patient that the procedure had been routine. Clearly, he did nothing of the sort. Neither statement was true. Ann was in the Lab for three hours and forty minutes. Why the Trust would pretend that the procedure took less than an hour I do not know. The only reason I can find is that they wished to conceal what actually happened that day.
As it happens, it would eventually be proved beyond any doubt that the procedure did not take “less than an hour” but in fact took two hours and five minutes (and this will be explained in later chapters).
Dr B would also later re-state his assertion that the ICD generator had dropped, adding that he decided to leave it in the lower position – only to state during the subsequent complaints procedure that the ICD hadn’t dropped at all.
Consistency and honesty, I concluded, are not Dr B’s strong points.
Before this tale began, I was one of those who thought that consultant cardiologists had something approaching super-hero status. They were, I thought, the best of the elite of the medical profession and I had nothing but admiration for their knowledge and considerable skills. By now, that illusion was in tatters.
That same day, Ann was also introduced to Nurse N, the specialist ‘arrhythmia nurse’, and the two spent a considerable amount of time talking together as Ann lay immobile that day. Nurse N’s role, it seems, is that of a counsellor as well as a nurse and she demonstrated this by being a hugely supportive and patient listener when Ann most needed it. The contrast with Nurse M’s insensitivity could not have been greater. Nurse N would continue to be very helpful for many months. Another outstanding member of the nursing team.
Saturday 26th September was yet another discharge day.
Obtaining drugs for discharge from the pharmacy is not a quick procedure. At Castle Hill, it can take up to 12 hours. With this in mind, the drugs card was sent to the Pharmacy early in the day. So, when Ann asked for pain relief, she was told she couldn’t have any because her drug card was at the Pharmacy! She spent her last day in hospital once more in unrelenting agony. It didn’t occur to anyone to write up pain killers in advance for the 12 hour wait.
X-rays were taken to check that the ICD leads were all in place and, prior to discharge, Ann was visited by one of the few cardiology consultants she hadn’t already met. Dr N was young for a consultant, rather public school and only slightly less patronising than some of his peers.
He explained that he had discussed the potassium tablets with Dr B and they had agreed to allow Ann to have supplements “for her peace of mind”. At least he managed not to pat Ann on the head. He also talked, as Professor J had done earlier, about the ectopic beats being in the atria which was completely at odds with everything the electrophysiologists had told us and, we assume, was completely erroneous.
Ann was discharged at 6.40 that evening after the drugs finally turned up. They even managed to cock up the discharge letter. See below.
It was a huge relief to be away from the madhouse. However, nothing had been done to address the condition that had led Ann to be rushed to hospital in the first place – the severe arrhythmia.
At no time was it ever suggested that the loose wire was contributing to the arrhythmia so fixing it did nothing to reduce the danger that the arrhythmia presented to Ann. Her drug regime (i.e. the Sotalol that was now the only means of managing the arrhythmia) remained at the original, introductory dose and so far as we could tell, had not been reviewed. Our concerns about her consistently falling electrolyte issues were given only lip service.
All that had been done so far as we can tell was to fix something that had not been done properly in the first place.
So, after another week of extreme pain, unnecessary suffering and distress in the cardiac unit, Ann was no further forward. On the contrary, she was in unrelenting agony from the brutal surgery, and just as before, was significantly less well at discharge than when she had been when admitted. It was now four months since Ann had first presented with arrhythmia. She had spent 46 nights in the cardiology unit. And yet she still had the arrhythmia
She was told she would receive a recall appointment to see Dr B in eight weeks.
Until then, Ann was on her own.
Little did she know but the unbearable pain from the surgery was not temporary. It was going to continue not for days but for years.
In fact, probably for the rest of her life.
Go straight to Chapter Eight