Chapter Eight – Isolation

I find myself telling the story rather faster than I had expected. This is partly because these early chapters are substantially borrowed from the lengthy complaint we would eventually submit to the Trust. If I am honest however, I suspect that it is also because I want to get it over with.

I had hoped that the writing process would be cathartic and that I would feel better for unloading the burden. I don’t. Reliving these events only serves to remind me of the cause of Ann’s continued suffering and I am unable to shake off the anger that has been with me for the last two years. That corrosive anger is just one of the many unforeseen consequences that Ann and I have to live with which the Trust has chosen to ignore.

If only the doctors had the humility to admit that errors were made and had taken the trouble to explain when things just hadn’t gone as expected and then apologised, we wouldn’t be here. Unfortunately, as you will read in the coming chapters, far from apologising, they would simply wash their hands of Ann.

So we resume the story on Monday 28th September 2015, five and a half months after I first drove Ann to the ED, four days after the repeat surgery and less than 48 hours after Ann had been inappropriately discharged for the fifth time. That is to say, she had been discharged once again without her arrhythmia fully managed by her medication. And it could have been controlled because, as we will soon hear, they did get there in the end.

At 5.00pm on that Monday, Ann was resting in her usual spot on the sofa (where she spent much of that year) when she suddenly went extremely grey, became very dizzy and clammy and entered a prolonged episode of very severe arrhythmia.  Her pulse varied from completely undetectable to very erratic and strong. It seemed that she was experiencing a very high level of ectopic beats and was in danger of going into dangerous sustained VT and being shocked by the ICD.  The blood pressure cuff we use at these times to measure Ann’s heart rate was unable to get any reading at all because the pulse was too fast and chaotic.

At this point, we realised that Ann had forgotten to take her potassium on time so I immediately gave it to her.  The potassium was taken in the form of an effervescent tablet known as Sando K which is dissolved in a glass of water. Keen to avoid an unnecessary further ambulance trip to the hell that is the ED, I then called the emergency number on Ann’s ICD card (the CMU).  As ever, the phone was not answered and so after leaving it ringing for two or three minutes, I called Ward 28.  The call was answered quickly and I was passed to senior member of staff, Nurse P, who was her usual pleasant, calm and extremely helpful self.

I was connected to Nurse P for 13 minutes and by the end of the call, the arrhythmia had lasted for 20 minutes but had settled down and Ann had returned to what appeared to be a normal sinus rhythm at her standard, paced 60bpm.  It seemed to be an eloquent demonstration of the importance of the potassium levels. It was a good job that the consultants had acquiesced to Ann’s request for potassium supplements for her ‘peace of mind’.

Nurse P agreed completely about the likely relevance of the potassium and recommended that we present ourselves at the pacing clinic the following morning so the device could be interrogated to see what was going on. Given our experience at Hull Royal Infirmary Emergency Department, we also discussed the possibility of bringing Ann straight to Castle Hill next time there was an emergency and I pointed out that Dr D had said that she would arrange for Ann to be on a direct admissions list.  Nurse P explained that Ann’s name was not on the list and so we would have to take the ED route in an emergency.  So, either Dr D’s assurance had not been followed through after all or, given that Ann had already had one direct admission, it was perhaps more likely that her name had been removed from the list.

The following morning, Tuesday, we presented at the Pacing Clinic as Nurse P had suggested and we were seen by the pacing tech, Tech A.  He placed the telemetry wand over Ann’s chest and the live trace immediately showed a high number of ventricular ectopics.  The upper chambers were beating at a regular paced 60 beats per minute.  The ventricles had an additional ectopic beat roughly five out of every six atrial beats.  The bottom of the heart was doing its best to beat twice as fast as the top (and succeeding most of the time).  Little wonder then that Ann felt so dreadful. Her heart could not pump enough blood to the organs if the ventricles were beating at double speed and out of sync with the atria.

So, the assertions that Ann had been given by Dr N prior to discharge that the ectopic beats were coming from the atria were every bit as inaccurate as we thought. Why an experienced consultant would offer such an ill-informed opinion when a word with his colleagues or a ten second glance at Ann’s medical records would tell him otherwise is anyone’s guess.

Furthermore, Tech A was able to confirm categorically that the accelerometer in the ICD was switched on – and had been since the original implantation. So the atrial lead would pace upwards on activity – the exact opposite of what we had been told prior to implantation (that the atrial wire would only pace a minimum rate and the sinus node would be allowed to do any upwards pacing naturally).

Our patience simply ran out at this point. Enough was enough. We made it absolutely clear that we could no longer accept a constant stream of information that wasn’t just inaccurate but, more often than not, the exact opposite of reality.  We also expressed our extreme dissatisfaction at yet another discharge without the actual underlying problems being properly addressed and explained how utterly isolated and unsupported patients become after discharge with few means of making contact which, for the most part, aren’t even answered anyway. Suffice to say that a lot of frustration had built up over the last 5 months and it flowed freely.

Given that Tech A got something of an ear-bashing from both of us, he was both understanding and very helpful and arranged for us to see one of the EP registrars.  After we repeated our ear-bashing to him, he in turn tried to arrange for us to see Dr B.

Dr B was apparently in theatre so eventually, we were seen by Dr N, the same consultant who had seen Ann before her discharge the previous Saturday and told us of the non-existent atrial ectopics.

To be fair to him, he listened patiently to our account of the recent past and he apologised first for providing another erroneous diagnosis and then on behalf of the department for the dreadful experience Ann had suffered over the preceding 5 months.  He was with us for about 45 minutes and allowed us to vent at him without interruption.  Writing this account may not be very cathartic but venting at Dr N that day was cathartic as hell. I can’t tell you how much better I felt to have the opportunity to finally fire both barrels at the department. I don’t believe we had been given an apology by cardiology before or since and it was genuinely appreciated. In due course, he arranged for us to see Dr B at his clinic the following morning.

So, on Wednesday morning, we arrived early for Dr B’s clinic and were seen promptly.

Dr B suggested that Ann wear a Holter monitor for a period before her next appointment so there was a more detailed picture of what was happening.  Ann explained that she had worn one for 7 days last time and it had recorded nothing at all out of the ordinary, only for her to be rushed to hospital by ambulance the very next day suffering from dangerous arrhythmia.  It was therefore agreed that arrangements would be made for Ann to wear a monitor for 14 days. We were very satisfied with that. 14 days would mean that there was a very good chance that the monitor would capture whatever was going on.

As I recall, we did not spend much time talking about the terrible pain that Ann was suffering. At this time, it was only a few days since the surgery and the assumption was that it would subside in due course.  How wrong we were.

We did talk about the terrible sense of isolation following discharge however and the lack of any ready means of communication, including the unanswered emergency telephone.  Dr B pointed out that we could contact the cardiac secretaries at any time and ask to be added to his (or other consultants’) regular out-patient clinic list.

This was a complete revelation!

We had been in the system for a full 5 months and no-one had taken the trouble to impart this utterly priceless piece of information.  We could request a consultant appointment at any time but nobody had seen fit to tell us!

We were ‘gobsmacked’. It was simply beyond belief.

We were also delighted.

And the delight continued. The Sotalol was increased from 40mg b.d. to 80mg b.d. with immediate effect.


At last, the arrhythmia might be controlled. This of course could, and should have happened before discharge (and indeed, probably before the one before that, and perhaps the one before that). Had we not thrown a tantrum and engineered this unscheduled appointment, Ann would have been left with the inadequate dose and risk of dangerous arrhythmia and possible electrical shock for another two months!

That seems to be the standard modus operandi of the department:  Get them out of the door as soon as possible.

“What are you worrying about? You have a defibrillator in your chest – it’s not as if you’re going to die after all!”

You would be amazed how many doctors actually said that! (Three pompous, tactless idiots, as I recall).

How wonderful it would be if all cardiologists had to endure a defibrillation before they are let loose on patients. I think that there would be a sea change in attitudes and outcomes.

Oh how I’d love to hold the paddles!


Back to the tale.

I believe Sotalol takes a few days to ‘load’ (that is to say, the drug has to build up in your system over time) so the following day, Thursday, the increased dose had yet to take full effect.  Around 6.30pm, Ann went into severe arrhythmia once again.  As before, the blood pressure cuff could only take measurements every few attempts as her pulse was too fast and irregular.  At 6.40, she had her first burst of ATP (anti-tachy pacing) and her blood pressure reached 191/115 which is pretty dangerous.  She had a second burst of ATP at 6.50.

We tried the emergency number again but as usual, the staff chose to ignore the ringing phone.  In the end, we simply gave up and decided to risk getting through the episode on our own.  Only if we thought that Ann’s life was in immediate danger would we risk subjecting her to the deprivations of the ED. Better that we just stayed calm and rode the wave together with our fingers crossed.

As it happens, this episode lasted a full 35 minutes but Ann’s heart rhythm and BP returned to normal without anything beyond her evening Sotalol and potassium supplement.  In the end, we learned that if Ann took the evening Sotalol dose a little earlier, then these ‘breakthrough’ episodes were less likely to happen. We also needed to keep a very close eye on Ann’s potassium levels so she had weekly blood test at the GP surgery. If the levels were low, she took the supplements. If they were satisfactory, she didn’t.

It is worth mentioning that we were told that these ‘ectopy storms’ where large numbers of ectopic ventricular beats occur all together but the heart doesn’t go into full ventricular tachycardia is a rhythm that the ICD may not be able to reverse. There is therefore some risk of a fatal outcome. That would also perhaps explain why the ICD stayed dormant during the Wednesday episode. It didn’t recognise the ectopy storm as VT and so did not intervene.

Getting through these episodes without support is genuinely terrifying, even after you have been through it many times as we had. The fact that the Trust subjected (and no doubt continues to subject) its patients to these ordeals unsupported because they never answer the emergency number is nothing short of a disgrace. If this tale achieves nothing else, it must at least lead to a new emergency number for arrhythmia patients that is answered instantly, 24 hours a day, 365 days a year. Until it does, I will not stop sharing this story across the world.

These scary episodes became fewer and farther between over the following few days as the increased dose of Sotalol took effect (and the evening dose was taken earlier).  Ann still had regular ‘ectopy storms’ but they did not seem to develop to the point where Ann had any loss of consciousness, they didn’t last as long and the ICD stayed dormant for the most part.

The pain from the operation site however remained extreme.  Ann was taking paracetamol, codeine phosphate at maximum dose and was regularly topping up with morphine. She remained unable even to walk unaided from the living room to the kitchen.  Seriously, she couldn’t walk 7 or 8 yards without support. She could sit upright to eat for up to 30 minutes (in considerable pain) but the rest of the day, she had to be lying down for the pain to be at all bearable so that the weight of the ICD generator was supported on her ribs, not her mutilated muscles.

She would spend up to 18 hours in bed, and the rest of each day on the sofa. Because she couldn’t walk around without help, I had to be there 24 hours a day and my professional life continued to be all but non-existent. By now, Ann has spent tens of thousands of pounds paying other dentists to treat her patients so that she had a practice to return to one day. Our savings were disappearing. Our normal lives had effectively disappeared altogether by now.

On Monday 12th October, Ann received a recall appointment to attend the pacing clinic – on November 19th, another 5 weeks away!  This would be the 8 week recall promised at discharge. Given that she had been told by Dr B that she would wear a Holter monitor for 14 days before her next appointment, Ann called the pacing clinic to ask about arranging to pick one up.

Unusually, they answered straight away.  Ann explained the issue.

“There’s nothing here about a monitor.  Let me check…..  Oh here it is.  Can you pick one up tomorrow and drop it back on Wednesday?”

“It’s supposed to be for fourteen days not 24 hours!”

“Well I can’t change that.  You’ll have to speak to Dr B about that”.

The cardiology admin devil had been at it again. Incompetence at every single turn. Not to worry.  We now had the magic number for the cardiac secretaries so Ann dialled it.

It rang….  and rang…  and rang.

She tried again a little later.  Same story.

A little later.  No answer.

She tried the Castle Hill main switchboard so she could be put through from there.  No answer.

So, the emergency number for seriously ill cardiac patients was not answered. The cardiac consultant’s secretaries’ number was not answered and now, even the bloody hospital main switchboard was not answered.

Perhaps we were supposed to send a messenger pigeon!

Or maybe smoke signals.

She tried the direct line again.  No answer.

Her last attempt was at 2.50pm.  There was a recorded message saying that the office closes at 3.00pm (even though it was before 3.00pm obviously).

Tuesday 13th October. Several more attempts at calling the cardiac secretaries.  None were answered.  By way of experiment, Ann made the last attempt at 2.30pm.  You’ve guessed haven’t you?  There was a recorded message saying that the office closed at 3.00pm and suggesting that she try again tomorrow.

We eventually established that the answerphone is routinely switched on from 1.00pm each day.  Members of staff told us that not even cardiology personnel can speak to the secretaries after 1.00pm. Apparently, they need some peaceful typing time. Bless them! As they don’t usually answer the phone before 1.00pm anyway, it is all a little academic. After 1.00pm, they switch on the answerphone. Before 1.00pm, they just ignore it.

Wednesday 14th October brought exactly the same routine as Tuesday, with exactly the same result (including the 2.30 call and answerphone).

Thursday was exactly the same as Wednesday.

Friday: Ann had had enough by now.  She didn’t even bother trying.

Ann spent Saturday in her usual place on the sofa.  I could hear her moan with pain every so often.  Try as she might, she couldn’t stay silent during the worst spasms of pain. No matter where I was in the house, I could hear her cries and whimpers. After a while, it began to cause me extreme stress. The frustration of having to listen to her and not be able to do anything to help was sheer torture. Of course for her, it was infinitely worse. She had the stress I was feeling and the unbearable pain as well. She was a shadow of her former self. Every time she had been admitted to Castle Hill, she lost part of herself. Every time she was admitted, they increased her suffering.

She had another ectopy storm that day but her blood pressure didn’t go above 175/95 and there was no ATP from the ICD.

We didn’t try to call anybody.  What would be the point?

Ann felt completely abandoned yet again. No-one would see her for over a month. She needed a Holter monitor for a couple of weeks but the consultant hadn’t arranged it and the receptionists at the pacing clinic didn’t give a damn.  She couldn’t point this out to anyone because nobody could be bothered to pick up the phone. She just wanted to scream (and occasionally did).

She was in constant dreadful pain.  She was at constant threat of a defibrillator shock. She had no idea when or if the doctors would ever get the drugs correct or the ICD setup optimised so that she could be well again.

On Sunday Ann had episodes of worrying central chest pain through the night accompanied by regular ectopic heartbeats.  In addition, the post-operative wound pain continued to be extremely severe, causing Ann to take additional morphine on top of the paracetamol and codeine to try and control the pain.

At lunchtime, she began a major ectopy storm which followed her slowly and carefully climbing the stairs and which lasted much of the afternoon.  As ever, her BP was elevated.  At 1.45pm, when it began, her BP was 186/96 with a heart rate of 53bpm (below the minimum level at which she should have been paced which should have been impossible and was very worrying).  At 5.00pm, it was still at 154/98 at 62 beats and just 5 minutes later at 5.05pm, it was at 162/99 at a doubled heart rate of 122 beats per minute – despite the fact that Ann hadn’t moved an inch from her prone position on the sofa.

Clearly, the drugs were still not doing their job.

So, we presented once again at the Pacing Clinic without an appointment at midday the following day Monday 19th October.  We were about to call the arrhythmia Nurse N for some moral support when she happened to walk straight up to us.

We brought her up to date with the continued post-op agony and arrhythmia.  We also told her about the elevated BP levels and she said that the opposite ought to be the case as the drugs Ann was taking would normally supress the BP.

She kindly went off to find Dr B to see if he could see us.

In due course he did, along with one of the pacing technicians, and Nurse N.  Ann explained about the continued pain, the ectopy storms and her inability to do anything very much apart from lie on a sofa all day.

The device was read and the data clearly showed the storms that Ann had described.  Her impression of what was happening was always accurate. The ectopy storms tended to be at their worst early in the morning and early in the evening – so around the time when the beta blocker doses fell due.  Clearly, there was still some breakthrough arrhythmia as the drugs wore off.

The heart rate recorded the day before below the minimum pacing rate was explained by Dr B as a consequence of the ICD stopping pacing for an interval after a sustained series of ectopic beats – a reset after a period of ATP in effect.

We also discussed the Holter monitor fiasco.  We reminded Dr B of the earlier conversation about a 14 day monitoring period but he said that now that the ICD had been read and they had seen the ectopy, he was confident that 3 days would be sufficient. The appointment would be amended accordingly.

Needless to say, it wasn’t.

If Dr B tells you there is going to be a drought, be sure to take your umbrella.

As for the dreadful post-operative pain, Dr B asked whether Ann had a temperature to establish whether there was any infection (which she didn’t and there wasn’t) and he took a cursory look at the operation scar and commented that it “appeared to be healing nicely”.  He didn’t examine the area surrounding the wound, or the armpit, or the arm. He didn’t palpate the area or apparently make any attempt to identify the reason for Ann’s unbearable discomfort.

“Healing nicely”! Given that Ann was now – five weeks after Dr B’s aggressive dissection – effectively an invalid requiring 24 hour care as a result of the surgery, that comment seemed inappropriate at best and downright uncaring at worst.

Another patronising pat on the head to add to the collection.

Either Dr B didn’t care in the least about Ann’s pain, or he was in denial because he knew how it had been caused. Neither option was acceptable.

The overwhelming impression that we got (and this had been the case for months) was that all the medical staff thought that Ann was something of a ‘drama queen’.  Because the pain she was experiencing was so unusual, they just assumed that she was consistently exaggerating or even imagining it.

This could not have been further from the truth.

Ann’s pain threshold is way higher than most. She went through two very long and painful labours with each of our two children with NO pain relieving drugs.  She even went through a horrendous operation (which I witnessed) to remove an infected cyst from her armpit whilst she was pregnant with our son without any anaesthetic or pain relief whatsoever in order to protect her unborn child.  Take my word for it: Ann is as strong as an ox, as brave as a lion and just about as far away from ‘drama queen’ as it is possible to get.

As for the blood pressure, Dr B simply advised Ann “not to obsess on the numbers”.  Pat on the head number two of the day.

Be that as it may, Dr B prescribed a low dose of the original beta blocker (Bisoprolol) to be taken at lunchtime (between the Sotalol doses) to reduce the breakthrough arrhythmia and the ICD was reprogrammed to increase the minimum pacing level from 60 beats per minute to 70 to reduce the likelihood of ectopic beats. If there was a smaller gap between heartbeats, then it would be harder to squeeze in an extra one apparently. It made sense.

The increased pacing rate didn’t seem to work initially. Ann continued to experience ectopic beats throughout the rest of that day.

Back at home later that afternoon, as the sun was shining, we decided to try to take a short stroll down the street to allow Ann to feel fresh air on her skin.  She had been confined indoors for too long. We managed to go about 50 yards before she was in a state of near-collapse.  Her heart was “going crazy” (and the last time she had said that she had arrested) so we had to return very slowly to the house, and back to the sofa, where she would spend the rest of the day (and most of every day for the following 6 months).

From Tuesday 20th October to Saturday 24th October, Ann continued to experience regular ectopics and the post-operative pain became steadily more severe.

Gradually, the groans and whimpers became cries and screams.

She still needed regular morphine on top of the paracetamol and codeine to manage the pain.  She continued to sleep a regular 10 to 12 hours a night, crying out every so often in her sleep as the occasional powerful ectopic beat or spasms of pain disturbed her briefly. For the most part though, she was ‘knocked out cold’ each night by the growing cocktail of drugs.

The addition of the Bisoprolol into the drug cocktail had also made the side effects more severe. Ann’s cognitive ability and short term memory were further degraded and she felt even more “woozy” and generally unwell.

Friends and family remarked that she was certainly looking more ill.  It was obvious to us that far from recovering from the surgery, Ann was still getting worse.

On Sunday, in an attempt to introduce some variety into Ann’s routine, I drove her to Waitrose and pushed her round the store in a wheelchair as I did the weekly shopping.  It was another serious mistake.  Before we had been there for even ten minutes, she was crippled with pain.  Now, she couldn’t even manage 30 minutes sitting up. When we returned home, she needed to take additional morphine and, unusually, she went straight to bed where she slept for 5 hours straight through, on top of the 12 hours she had already had overnight.

On Monday, once she had had enough rest, Ann rang Nurse N and brought her up to date with the continued pain, ectopy and increased side effects.  N suggested that it might be worth seeing the cardiac physiotherapists about the post-op pain and she undertook to discuss Ann’s case with them.

Reliable and helpful as ever (she is a star) Nurse N called back later in the day to inform Ann that all the senior cardiac physiotherapists were on holiday at the same time because it was half term.  No cardiac physiotherapy provision at all. One wonders if the Trust ever takes its patients into account at all.  In my workplace, we try to stagger holidays so our clients are never left completely without cover.  It isn’t rocket science.

Meanwhile, back on the sofa, the pain was still excruciating.  During the evening, Ann had another unpleasant episode of ectopy with a blood pressure at 170/94.

Ann telephoned the pacing clinic again on Tuesday to see if the 3-day Holter monitor had been arranged.  Of course it hadn’t.  Ann was told that she had to call the cardiac secretaries again – yes, the ones that never answer the phone.

After 14 days of unsuccessful attempts, Ann finally manged to get through to the cardiac secretaries the following day and actually spoke to Dr B’s secretary.  Once Ann had recovered from the shock of the answered call, she explained about the originally-14-day-but-now-3-day Holter monitor and the fact that the pacing clinic still incorrectly had it down as 24 hours despite the conversations with both Nurse N and Dr B himself.  Ann also requested an urgent appointment with Dr B in the light of the still-escalating pain 5 weeks post-op along with the fact that she was, by now, completely unable to sit up or stand for more than a few minutes each day (this when she had originally been told she would be up and about just 24 to 48 hours after the original operation – TWO MONTHS EARLIER!)

Dr B’s secretary was pleasant but not very helpful.  She said that the computer would not allow her to alter the Holter monitor request and so she would have to speak to or email Dr B.  She explained that Dr B would be on holiday from 11th December so Ann would need to see him before then.  When asked whether she would call Ann back to let her know what Dr B had said, the secretary said no, Ann would only hear from out-patients. So, Ann would not know if the Holter monitor request had been corrected unless she chased it up herself and she would only learn about an appointment with Dr B if the clinic actually managed to send a correct appointment letter (which we knew from experience was fairly unlikely).

So, Ann was left to wait to find out whether the hospital administration would make the same unholy mess of this as they had of everything else.

They did.  Obviously.

The appointment with Dr B never arrived.

In fact Ann didn’t receive any more appointments at all.

This time, it wasn’t accidental. We’ll find out why in the next chapter.

Go straight to Chapter Nine

2 thoughts on “Chapter Eight – Isolation”

  1. I have been sitting on the sofa where I spend most of my life too reading you story, trying to get the taste of magnesium and potassium from my mouth . I thought I was alone going through this – totally alone.
    I honestly don’t know what to say to you both. My life has been turned upside down too. I too have an ICD. I have hypertrophic obstructive cardiomyopathy. I’m on my 2nd ICD and I had the same problems as Anne did. My meds are causing low potassium and magnesium too and my ICD went off last week because of that.
    I had been begging my GP to give me supplements as my bloods were borderline but they didn’t listen. Instead, they said I’d had a stroke. Total rubbish.
    They then sent me to a neurologist and I had diabetic neuropathy testing. Rubbish too. I then wanted a second opinion in cardiology as my local cardiologist tried to put me on Amioderone. Thank goodness I knew what it could do – a friend of mine now has fibrosis of the lungs and begged me never to accept it.
    I’m still in a terrible place, but reading your story has given me hope, I think you are both brave, loving strong people.
    . Its just a shame that most consultants are not, we are just numbers to be removed from their lists and they really couldnt give a monkies that we are human and have feelings and people that we love.
    Thank you both for your very moving story. A wise old lady told me that in this world we have to look after ourselves. We need to do the math, learn about our medications and use that knowledge or any of us can end up in the situation that you and I have been and are going through,
    Oh by the way the next one to pat me on the head might get a broken finger!
    Stay Happy and Healthy, and remember you are not alone
    Kindest Regards

    1. Hi Amanda, Sorry it has taken so long to respond to you but life has been very hectic and I’ve not been checking my inbox as often as I should. So sorry to hear that you have endured similar experiences. As you say, the central issue is often the medics’ inability to listen to us. They are so happy and secure on the pedestal we unwittingly put them on that they can no longer see that the person with the most expert knowledge in this situation is the patient. The patients are experiencing the illness and have the best insight to offer. The doctors assume that we do not understand. Until there is fundamental change in the way doctors are educated, the harm will continue. Keep fighting and never give up. Matt

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