Many people who have been kind enough to read the story have asked through the Facebook page and Twitter how Ann is today, after all that she went through. So, this chapter is for you. Here, I provide an update on Ann’s progress since the third implant procedure in Newcastle.
We have already heard about the remarkable improvement that followed the re-positioning of the ICD in Newcastle and how Ann was able to take her first hike in the country when we visited Cornwall in June 2016 and could hold our newborn grandson following his birth later the same month. Before we resume that narrative however, I would like to indulge in a brief detour on a different subject – me.
AS we enter the summer of 2016, with Ann was more stable and beginning to resume a more normal life, I made the overdue admission to myself that I too had been severely damaged by the events of the previous fourteen months. Caring for Ann through the worst of the effects of her treatment and fighting on her behalf for an appropriate response from the Trust had taken its toll. The resuscitation from the cardiac arrest was never far from my mind. Waking up every hour through the night and immediately checking that she was still breathing lasted for months on end before I was able finally to relax a little and sleep reasonably well.
For over a year, I had tried – and mostly failed – to balance my work with the demands of being there for Ann. At work, income from my clients had effectively dried up altogether and I struggled to keep live projects moving forward. I had not been there when my team needed my direction and the consequences were now showing themselves. The business had lost perhaps £300,000 in new project income as a result of my prolonged absences and the remaining work was not running smoothly. My colleagues were wonderful and completely understanding but knowing that my absences had damaged the business was a further source of enormous worry and stress for me.
Worst still was a feeling that in many respects, I had ceased to exist. That is to say, I spent my every waking hour being either Ann’s carer, or an ineffectual boss, or a part-time parent and son but there had been no time left at all just to be myself. The demands on my time were so unrelenting that I never did anything that wasn’t for someone else. I felt as if the private me, the me that existed inside my head, had simply been extinguished.
I came to resent it. And resenting it felt self-indulgent and so I felt guilt on top of the resentment. And anger. I still couldn’t shake the livid anger I felt towards the Trust and the medical staff who had harmed Ann and then simply walked away from her.
Resentment, guilt and anger was a toxic combination. I was falling apart.
So in July 2016, I decided to seek professional help – something I had never done before for a non-physical condition. I began weekly counselling sessions which I arranged privately rather than through our GP.
I learned that I was displaying all the signs of Post Traumatic Stress Disorder (PTSD), the same condition that is so often suffered by soldiers after combat tours. I certainly felt like I had been through a war. Bringing Ann back from the cardiac arrest was identified as the most traumatic single event but it was the complete absence of any activity for myself which was identified as the main cause of my ongoing difficulties. I had been so focused on Ann and her health for so long that I had neglected myself entirely.
Talking about what had happened with someone who had not been involved made an enormous difference. I was able to vent my frustration with full full force and without fear of judgement. There had even been times when I wanted to be critical of Ann but I couldn’t countenance doing so when she was so unwell but now I could express those feelings for the first time and nobody was going to get upset. In only a couple of sessions, I tipped an entire truckload of mental detritus onto the counselling room floor.
And God, it felt good.
I was advised to fight for personal space at all costs, even if that was at Ann’s expense occasionally. I had to refuse as many requests for help as possible and create time which was mine and mine alone. So, I took myself (and my old two-seater sports car which hadn’t been driven even once since Ann had been taken ill) off to the Yorkshire Dales for a few days of hill climbing and solitude. It was the first time I had left Ann behind apart from when work had required me to do so. I pushed myself hard and walked further and higher than I had planned. Being utterly alone up on the moors with only the silence for company was beyond wonderful. It gave me the chance to think at last, to look for the positives amongst all the negatives and look at what had happened to us from a new perspective.
I resolved to do everything I could to ensure that others didn’t have to follow Ann’s journey. I would not allow the Trust to walk away and not learn from its mistakes. But I would not do so at the expense of my own peace of mind. I would allow myself to be selfish occasionally and ensure that I created a bit of ‘me time’ every so often.
I returned refreshed and restored. The trip, and the other counselling sessions that followed, brought me back to myself. I became more effective at work, less prone to outbursts of anger and generally more at ease. It also taught me a profound respect for other carers. My time caring for Ann was relatively short. Others end up caring full time for relatives, some of whom have lost their mental faculties, for years on end and most do not have the opportunity for country breaks or counselling. Oh, how I understand their burden now. It must often be unbearable.
Thank you for allowing me that little excursion. Now, back to Ann:
July 2016 was also the time for Ann’s first recall to the Freeman Hospital following the corrective surgery in May where she saw one of Dr S’s senior registrars. She was able to tell him that whilst there was still residual pain, the intensity had reduced significantly. As a result, Ann had been able to reduce the dose of Pregablin gradually since the operation and was now at roughly half the original dose. That meant that the cognitive side effects had diminished too and her memory and ability to concentrate had improved.
She underwent the usual tests and nothing of major concern was found. For cardiologists reading this, Ann’s ECG confirmed that Ann was receiving atrial pacing at 65BPM from the ICD but had first degree AV block and longstanding right bundle branch block (RBBB – which we had known about for some time). Neither was a worry. ICD interrogation revealed no significant arrhythmias. She was very stable.
However, she had developed a persistent cough and she believed that this was caused by acid reflux (dyspepsia) and she discussed this with the doctor. Ann was prescribed Lansoprazole and was advised that if the symptoms didn’t improve, she would need see her GP to arrange an endoscopy referral.
The following week, at the end of July 2016, Ann finally returned to work after a fourteen month absence. Her fellow dentists had covered her patients for the entire period. They had been kind, understanding and supportive throughout and we owe them a huge debt. Ann started working just two days a week but soon increased to her usual three days. That meant working two days consecutively (her surgery days were Tuesday, Thursday and Friday, one of the other dentists used the same surgery on Mondays and Wednesdays) and it soon became clear that she couldn’t cope. She needed at least a day to recover from a day with patients or the chronic pain at the implant site quickly returned. It was soon agreed that from now on, Ann would only work two days. So, as well as the loss of income caused by her prolonged absence, she would also have the ongoing loss of income caused by the reduced working week. Nonetheless, that wasn’t really important. She was back at work at last.
She had survived and returned. I can’t begin to tell you what a relief that was for both of us.
In September 2016, we took a week’s holiday in Cyprus, where we did almost nothing at all! We enjoyed evening walks along the waterfront and charcoal-grilled fresh seafood at restaurants overlooking the sea but otherwise, we just lay in the sun with our nose in a book and recharged our batteries.
The cough and the acid reflux were still there though and the Lansoprazole had done little to relieve it. The pain caused by the reflux is also similar to cardiac chest pain so it was important to establish a cause and, if possible, eliminate it. So in October, Ann had the endoscopy.
It was discovered that Ann’s Lower Oesophageal Sphincter (the circular muscle that closes the top of the stomach and prevents acid from rising up the oesophagus) was completely lax. That is to say that is wasn’t closing at all. She was told that this had most likely been caused by her medication – with the Sotolol as the most likely candidate. As that is the drug that controls Ann’s arrhythmia so successfully, there was no possibility of changing it (and the damage had already been done in any event so it would be unlikely to recover even if the drug was withdrawn, we were told).
Ann was told to keep taking the Lansoprazole and see how things developed.
In the meantime, by degrees, the chronic pain at the implant site began to return. As Autumn turned to Winter, Ann started to take more paracetamol to control breakthrough pain and at other times, she would increase the dose of Pregablin. The pain made working much more tiring and she would collapse on the sofa when she got home, exhausted once more. It seemed like her recovery had stopped and we were going backwards again. It wasn’t long before Ann could be found quietly crying to herself in the evenings, her usual smile failing her.
Ann saw the pain specialist Dr Q again and together, they decided that it would be worth giving acupuncture a try. I had had acupuncture for severe pain from a trapped radial nerve and the results had been astonishingly good so we knew it could be effective, even if we didn’t understand how or why. She had her first session in mid-November with the pain team at the Beverley Community Hospital and emerged from it with extreme discomfort. It has to get worse to get better, we assumed. In all, she had four acupuncture sessions but it became increasingly clear that far from calming the nerve paths and reducing the pain, it was exciting them and making the pain much worse.
After the fourth session in mid-December, Ann collapsed at home whilst standing at the kitchen sink. Fortunately, our daughter was stood right behind her and caught her before her head hit the stone floor. A sudden massive spike of pain had knocked her out cold. The acupuncture had made things much much worse. The clock had been wound back an entire year.
The Beverley pain team then passed Ann to a physiotherapy team at Hull Royal Infirmary. They, Ann was told, had experience of complex chronic pain cases and may be able to help. It would be March 2017 though before Ann was seen.
We spent Christmas in Staffordshire with a large group of extended family. Ann wasn’t even able to carry a plate from the kitchen to the dining room such was the level of chronic pain. She could no longer pick up our Grandson and maintaining the Christmas cheer was a real struggle.
In the New Year, Ann arranged to see Dr S at the Freeman again to seek his advice. She travelled up to see him on January 13th 2017. I was away at a conference in Panama City and Ann was far too uncomfortable to drive to Newcastle so our daughter did the driving through the snow. (It was whilst I was away on this trip that the Ombudsman’s final report had landed as discussed in Chapter Fourteen).
Dr S said that he thought the solution most likely to eliminate the pain was the removal of the ICD altogether. Even then, the pain from the damaged pectoral muscles might continue to some extent, but at least it could be subjected to intense physiotherapy which could not take place whilst the ICD was in the way. For ICD removal to be possible, the underlying arrhythmia had to be eliminated – altogether – and that meant ablation of the aberrant signals.
To understand what is involved, we should probably take a slightly more detailed look at the specifics of Ann’s arrhythmia. As we know, she suffered from ventricular tachycardia. She had aberrant signals that originated in the ventricles somewhere which caused additional or fast heartbeats. In lay terms, those signals appeared to be coming from the wall of the left ventricle very close to the bottom of Ann’s heart. (For the cardiologists, Ann was suffering from ventricular tachycardia with right bundle block morphology and right axis deviation with a likely left anterior fascicular origin).
At Castle Hill, Ann had been told that the chances of successful ablation were as low as 10% and as high as 60% (by the same electrophysiologist). They had also told us that this origin for the aberrant signal was extremely difficult to access and that there was a substantial risk of damage to the AV node. If the AV node was damaged, no signals at all would reach the ventricles from the atria and so Ann would need a pacemaker to make her heart beat for the rest of her life. With no AV node, if the battery fails, so do you. At least with the ICD, and an intact AV node, you don’t die when the battery does.
So, Ann’s decision about whether to attempt the ablation was not an easy one.
The Freeman team was much more optimistic than the Castle Hill team however (probably because they were much more experienced and capable). Dr S was confident that he could burn out the bad signal successfully and he thought that it was certainly worth a try. Given the level of pain that Ann was experiencing once again, she decided to go for the ablation attempt in the hope that she could be free from pain entirely. It was worth the risk, she decided, if a normal life could be restored to her.
She was told that the waiting list was around six months.
So be it.
Days later, Ann took an emergency ‘sit and wait’ appointment at the local GP as her pain in the damaged muscles of her chest had become unbearable. The Pregablin was increased back to its original high level and Ann began to spend more time on the sofa and less ‘out and about’. She had three weeks off work in the hope that the inactivity would allow the pain to receded – and to some extent, it did.
You will recall the photographs below – one taken after the second procedure and one after the third. In the right hand shot, the ICD is lying flush with the skin despite being in front of the pectoral muscles. Since then, it has sunken into Ann’s chest a little further. It appears that the muscles so mutilated in the second procedure had atrophied and that process is continuing. If the ICD was removed, there would probably be a large depression in Ann’s chest where the healthy musculature used to be. It seemed to us that as the ICD settled further into Ann’s chest, it began to irritate the nerves in the area once again, causing the renewed pain. We have been given no alternative explanation.
February 2017 saw Ann back with the gastro-enterologists because the reflux was still a major issue. She had a very unpleasant catheter inserted into her stomach with the other end emerging from her nose and attached to a recording device. This she had to endure for 24 hours. There were actually two processes involved called Oesophageal Manometry and Gastro-oesophageal Reflux Monitoring. The manometry is carried out immediately after the tube is inserted and measures the effectiveness of the swallowing mechanism and the muscular action in the oesophagus. The tube is then left in place and the reflux monitoring process takes 24 hours during which the catheter measures acidity through the length of the oesophagus to see how much acid is escaping from the stomach.
The results were not encouraging. The medics recommended surgery to tighten the oesophageal sphincter (Fundoplication I believe it is called) which would be carried out laparoscopically (i.e. through several small incisions using a laparoscope). The procedure is irreversible and Ann was told that one of the side effects would be that she would never again be able to belch/burp – which presumably meant that any trapped air would have to leave by the only other available route!
Be that as it may, Ann was not about to let them put her under the knife again unless it was absolutely unavoidable. Both her surgical procedures at the Trust had gone wrong and she didn’t believe in third time lucky. She elected to try to continue to manage the reflux with medication. In due course, she took the Lansoprazole less and less and relied instead on regular sachets of Gaviscon and so far, that has been effective. Eventually, she may have to opt for surgery. For now, she is managing without.
Ann began her visits to the physiotherapy department in Hull in March. The first few visits were substantially a waste of time. The therapists had no idea what to do because of the presence of the ICD in the area they were supposed to treat, and so they barely touched her.
In June 2017, Ann received a letter from the Freeman Hospital in Newcastle informing her that the ablation procedure would be carried out on July 31st.
Also in June, Ann saw a new physiotherapist for the first time. This lady was a specialist in chronic pain cases, albeit mostly rheumatoid arthritis patients, but she took an immediate keen interest in Ann’s problems and expressed a determination to make her more comfortable. Unlike her colleagues, she was not put off by the ICD.
After examining Ann very thoroughly, she told her that there was substantial damage to the pectoral musculature as a result of the surgery but very probably also as a result of the haematoma which would have caused the tissues to become ‘sticky’ and fuse together where they should not. She explained that the muscles were now badly puckered and atrophied (wasted) and as a result, they were no longer able to support the weight of Ann’s left arm and breast. Furthermore, because Ann was unconsciously protecting the damaged area, she was only breathing at about 25% efficiency – which went some way to explain why she was always so tired and completely unable to exercise. It was the first time a medically qualified person had told Ann in simple terms the true extent of the damage caused by the Castle Hill electrophysiologists.
The physiotherapist believed that she would be able to treat the affected area but not until it had been rested for some time. So, she recommended that Ann wear an ‘orthotic’ garment – effectively a special corset that would disable the damaged muscles and do their job for them. It would not be a very glamorous garment, but if it enabled the physiotherapist to bring about some improvement, Ann was happy to give it a try.
At around the same time, Ann and our GP decided to abandon the the Pregablin which, like the Gabapentin before it, had ultimately failed to control the pain and instead caused the debilitating cognitive side effects, damaging Ann’s memory and her ability to concentrate. So, during June and early July, Ann very slowly reduced the dose of the highly addictive Pregablin and equally slowly introduced the new drug – Duloxetine, the third candidate on Dr Q’s experimental list of chronic pain drugs.
The results were remarkable. By mid-July, Ann’s pain had mostly disappeared. The cognitive side effects disappeared with it. She was sharp, full of vigour and the smile was back. It seemed that finally, a solution had been found and a relatively normal life was within Ann’s grasp. Within a few days, Ann took the decision to postpone the ablation attempt in Newcastle to give her the chance to assess whether a pain-free life with the ICD was possible. She wrote to Dr S and asked him to release the theatre slot to a more urgent case and requested a review appointment for November.
In the meantime, Ann had the fitting of her sexy new corset (which she had to wear for a fixed number of hours each week) and the first series of injections into her spine. These were to treat a degeneration of the discs in Ann’s upper spine – a condition completely unrelated to her cardiac issues and a widespread consequence of bending over a dental chair for more than thirty years (and a leading cause of suicide amongst dentists we were told). The treatment involves inserting an 8″ needle through the side of the neck and diagonally through the neck into the front of the cervical vertebrae and then injecting steroids. They told Ann that she was the calmest patient they had ever seen. She told them that after all she had been through, an 8″ needle through the neck was a walk in the park.
Then a couple of weeks later, just as everything seemed to be going really well, everything went to hell again.
On Wednesday 19th July, Ann went into ‘Hypertensive Crisis’ – her blood pressure suddenly shot up so high that blood pressure monitors couldn’t even measure it (in this case, a systolic pressure of over 220 and diastolic over 110). She was dizzy, sweating and vomiting. In hypertensive crisis, there is a very real risk of organ damage, stroke, cerebral haemorrhage and even rupture of the aorta or heart failure. This was extremely scary and even more worrying because the medications Ann was taking should have driven her blood pressure lower, not higher.
The only explanation that the doctors could offer was that this was a rare side effect of the Duloxetine! We had finally found a drug that made her well and it was trying to kill her.
Ann was told to reduce the dose immediately to half the prescribed level and the pain returned just as quickly, albeit less severely. Because she was still taking some Duloxetine, Ann was also prescribed blood pressure medication – one of the potential side effects of which is…
You really couldn’t make this stuff up.
And it knocked her sideways. Ann slept no less than 20 hours in every 24 after the blood pressure meds. She didn’t eat at all. She managed four days like this. So the doctors told her to reduce the blood pressure meds by half too but in the end, Ann just threw them in the bin. She simply couldn’t tolerate them on top of all the other medication and she refused alternatives.
In due course, she was allowed to take the full dose of Duloxetine occasionally when the pain was at its worst and Ann was careful to monitor her blood pressure when she took the higher dose. Strangely, her blood pressure was actually lower at these times, suggesting to us that the Duloxetine wasn’t the cause of the hypertension at all. However, no-one could come up with an alternative explanation.
In September, in an attempt to figure out what was going on, Ann was fitted with a mobile blood pressure monitor for 12 hours. The average BP measured was 147/83 which wasn’t as bad as it might have been and so the doctors relented and, because Ann was sensible and medically trained, they allowed her to continue without the BP meds in the knowledge that she would ask for some if required.
It took a while to get the balance right, but in due course, Ann learned to cope with some remaining pain and kept a careful eye on her blood pressure.
In October, Ann celebrated her sixtieth birthday. I took her to Portugal for a few days and we stayed in an amazing hotel on the coast north of Lisbon for four days, walking in the sand dunes, enjoying massages in the spa and generally relaxing. She looked amazing. Relaxed, well, radiant. You couldn’t possibly imagine that she was sixty and had been to hell and back with her health.
Then on the flight home, she went into hypertensive crisis again. Out of the blue. As before, it began with a severe headache, then feelings of nausea, then, just after we landed, the vomiting. The drive home from the airport was a scary one. We couldn’t decide whether to pull over and call an ambulance or just get home as fast as possible and check that BP. In the end, we continued home where the catastrophically high blood pressure was confirmed.
There was no discernible cause. No change in medication. No stress. No arrhythmia. Nothing. It just happened. We, and the doctors, have no idea why. Gradually, over the next few days, her BP fell to more normal levels once again.
There was another crisis in November, this time after another series of spinal injections so it is possible that the steroids were a factor in this case. She also developed flu in November after her compulsory annual flu vaccine and exposure to a very snotty grandson and so the review in Newcastle with Dr S was postponed until the New Year. Ann will see Dr S again in February 2018.
Recently, Ann came up with the idea that it might be wise for her to take magnesium supplements. Magnesium is essential in the maintenance of correct potassium levels which in turn is essential to prevent arrhythmia. Low magnesium is a known factor in migraine headaches and can cause muscle cramps. It can also cause high blood pressure! Magnesium is also said to have ‘analgesic-sparing’ effects. In other words, it makes painkillers more effective. It is also said to reduce the levels of a pain-carrying neurotransmitter chemical in the brain (NMDA) so it could potentially even reduce pain perception.
What’s more, the Sotolol Ann is taking is known to deplete magnesium, and many antacids (which Ann has used to combat the acid reflux issues) do the same thing so Ann’s serum magnesium could easily be low.
So she discussed her idea with Dr Q in December and he thought that it was an absolutely brilliant suggestion. He agreed that it could help with the pain, making the medication more effective and that it might also help with the erratic blood pressure. It certainly wouldn’t do any harm to Ann’s cardiac heath either. Ann started the supplements this week and has promised to keep Dr Q informed. I will update this chapter when we know more but so far, it looks promising.
As things stand today then, Ann is mostly well. As far as her arrhythmia is concerned, she is barely aware of it. She gets the occasional bursts of ectopy but these are short-lived. She hasn’t even had any anti-tachy pacing for many months so the Sotolol is doing its job and the ICD does little other than the usual atrial pacing. But it’s there if she needs it and that is a comfort.
Our friends and family believe that she is much more well than she actually is. That is because she always has a smile for them and because she looks so radiant. They do not see the crises or the evenings when the pain creeps up out of nowhere to reclaim her. But even that is somewhat less frequent these days.
I do not think that Ann will have the ablation – at least not until the battery in her ICD runs out and a decision must be made about whether to do a ‘box change’ or try the ablation so it can be removed altogether. That is probably around 5 years away. The truth is that she has grown comfortable with the companion in her chest that will not let her die.
She has got past the resentment she initially felt at falling ill despite having a near-perfect lifestyle and is now at ease with her underlying condition. She is not at ease with the consequences of her treatment however. As you have seen in this chapter alone, those consequences still have profound repercussions even today.
Life continues to be a roller-coaster ride.
The people responsible have learned nothing from Ann’s experience and could so easily inflict a similar fate on others. That is so very wrong.
But we soldier on.
What other choice is there?