Feeling Violated

On 29 July I went into hospital (in UK) for an ablation to treat palpitations, pre-syncopal events and angina - a one-day in hospital and take it easy for a couple more days before heading back to work kind of deal.

The 29th was a Wednesday, I did indeed leave hospital the same day, the following day was OK. On the Friday morning I went bat-shit crazy and was hospitalised locally. I was discharged a few hours later when they had decided I hadn't had a heart attack and went home.

I went indoor around 1700 feeling a bitjaded but still walking and talking. I turned out a couple of hours later and could barely get down the street, I had not an ounce of breath in me. I wasn't keen to go to hospital but eventually did so on the Sunday morning.

I was told I had heart block and would need a pacemaker. As a formerly healthy guy this came as a very nasty surprise.

The pacemaker was duly fitted on the Tuesday afternoon and I was dicharged on the Wednesday - actaully put in a wheelchair and wheeled off the premises...

On the Friday I still couldn't walk and was re-admitted as a potential heart attack. It wasn't so they decided it was Prinzmetal angina - a bit of a leap as I didn't have chest pain but what do I know. I was put on Amlodipine. It seems Amlodipine triggered pre-syncopal events about an hour after administration on the Sunday and Monday.

On the Monday the pacemaker was 'tweaked' because it was apparently set up for a much older person, I am 60 and active.

I discharged myself on the Monday evening when I discovered I had the nurse from hell 'looking after' me, I think she had taken something.

I revisited the hospital on the Wednesday to have the pacemaker adjusted again. The technician said the pacemaker was running only 15% of the time, down from 87% on the Monday.

I can't get current data. My thinking is that if the pacemaker is running at such a reduced rate it should come out. The technician said there is good conductivity from top to bottom of heart but top going too fast. I do have occasional 'runs' at around 150, up from around 85. He said they would use drugs to control the rate of the top of the heart and pacemaker to prevent it stopping, which is what has happened. After a visit to A&E on Sunday I am back on Bisoprolol, off Amlodipiine.

I feel abused, I went into hospital neither expecting or wanting a pacemaker, now needing one. I now have this junk in my chest, wires in my heart, no-one at the hospital  wwants to talk to me about removing it, or even giving me the data. The Medtronic app is blocked by the NHS so I can't see my own data which is a bit Orwellian.

Consultant now talking about ablating another node, pace & ablate - more agonising butchery. Christ was it painful, and what is with the electric shock treatment at the end?

Any reason I shouldn't feel raped. My business is shot and I would rather walk off a cliff than endure this junk in my chest. Medtronic don't answer technical queries.

Paul

11 Comments

You need to calm down, take a few controlled breaths and talk to someone you trust

by crustyg - 2020-08-19 10:37:44

There's a lot of anger in your post, and obvious resentment that you've been done over.

I empathise - pacemaker management seems to be the last bastion of 1950s medicine where Sir Lancelot Spratt talks over the patient, who ought to be jolly grateful that the great man has operated on them at all.

Fact is that no-one in the world has direct access to all of their heart device data, and no direct control over it.  Some of the modern PMs can be connected to a smartphone via Bluetooth.

Ok, vested interest time.  I'm a retired physician/pathologist with a PM, so I can see both sides of the issue.  You want heart data - buy yourself an ECG machine.  You can get a single-lead model from the Web for about £60.  And then what? Do you know what to look for? How to interpret the data?  What it actually means?

Someone signed the consent forms for your procedure - unless your signature was forged.  Yes, I know that it's possible to manipulate folk into actions that they later regret (why we have cooling off periods for some contracts): you could have said 'I feel that this is all going too quickly'.

Your options: 1) ask for a second opinion.  2) pay for a second opinion. 3) take your story to a solicitor specialising in medical negligence - or a combination of all three.  You should certainly apply to the hospital for your records and any imaging that they did - Access to Health Records Act 1990 means that they can't refuse this unless they try to claim that it will seriously damage your mental health.  Most Trusts are now very well organised for records and imaging 'disclosures'.  This set of data will allow you to have a sensible review with someone who has the relevant knowledge, and whom you trust.

Almost all of us here have experienced *some* degree of frustration over the loss of control involved in having a device implanted in you.  You *could* find someone to take it out, and one or two contributors here have done exactly that.

I urge you not to do anything hasty.  Find someone you trust and talk it through with them.  This is not the time for rash actions.

I wish you well

by Gemita - 2020-08-19 12:23:33

Dear Paul,

I can understand your anger.   You go into an ablation with hope for the future and you come out of the procedure with a such a devastating outcome.  It is more than a shock and I realise it is not over for you yet and you still have to make a decision about future treatment.

As crustyg says, now is not the time to rush into anything.  While your heart may be raging, you need to find some calm and reflect carefully on the best way forward, for your own peace of mind and safety.

What would I be thinking?  I would remind myself that an ablation is not always a cure for palpitations at least not immediately following an ablation and in fact my doctors suggested that I might need more than one ablation to get them under control.  I would remind myself not to rush into any further treatment and certainly not into another ablation (or AV Node ablation which is so final - we can discuss this option at another time) until I have all the facts.  I would remind myself that the first three to six months following an ablation is really the healing period and I can possibly expect a worsening of all my symptoms before they improve.  After this period I would be in a better position to make a decision as to whether another ablation might fix the problem or whether a different treatment approach would give me better control over my palpitations.  I would tell myself that if I have lost confidence in my doctors, it is time to find another team or go to another hospital for any future treatment.  A second opinion in any event is warranted in my opinion.

The electric shock treatment you mention at the end of your ablation would probably have been an attempted "cardioversion" to try to shock you out of your arrhythmia(s) back into normal rhythm.  They shocked me three times once during an EP study and my arrhythmia still wouldn't stop.  Cardioversions are at best only a temporary fix I believe.  

Looking at your post, it is hard to know whether you would have developed heart block even without an ablation.  Maybe the ablation caused the problem, but this is in no way certain.  You might well have been looking at a pacemaker somewhere down the line even without an ablation, so I wouldn’t necessarily blame the ablation or blame the doctors for negligence.  Even if your pacemaker is presently running only 15% of the time, it is still 15% necessary.  The data problem is the same for all of us.  I have recently requested my downloaded data, but as crustyg says, we need to know what to do with it and how to interpret it to benefit from it, so a slow learning process for those of us without a technical or medical background.  But you are entitled to have access to your records, be in no doubt about that.  Should the pacemaker come out ?  In my opinion, no.  Keep it for the moment to see whether your palpitations settle down or whether your heart block deteriorates.  You have gone through the implant procedure so you might as well benefit from it, particularly if you start having worsening symptoms.  At least with a pacemaker to support you when you most need it, you will be in a safer place.  Why risk having it removed until the picture is clearer ?  Yes they can now start using meds like Bisoprolol safely to slow down your heart rate and calm your tachycardia without lowering it to dangerously low levels because the pacemaker would kick in to bring it back up to the minimum rate set for you.

Paul, don’t hold your anger in, but please don’t walk off a cliff.  You have a lot of life still to live, family and friends who care about you.  It may not seem like it right now, but life can be good again, if you give it time.  Time is a great healer.  Don’t fight your device.  It wants to help you.  See it as a friend to get you out of trouble.  Find a team of doctors that you will feel happy and safe with and move forward with confidence.  I send my very best wishes for a speedy recovery and remember we are always here if you need us.

 

wow!

by AgentX86 - 2020-08-19 15:46:55

Many of us have gone through much, or all, of what you've gone through, though with better communication.

I've had three left atrium (all failed) ablations, and an A/V ablation. I also had a carotid angiogram (was supposed to be a stent but wasn't needed), which uses the femoral artery rather than vein for aaccess. They. Should have put you under for the "shock" (DCCV) at the end. This is often necessary for the heart to get back into a normal rhythm. They thought I was under for one of mine but I was just chilling. I'd been through all this before. Really,  the hardest part of any of them was the three to six hours flat on the back after.

I agree that you were treaded Shabbir but it sounds like you do need the PM.

Yes, cardioversions are only a temporary fix, if you can call it even that. They're in no was a cure, since they don't fix a thing. They return the heart back to NSR. I had one last seven years and another less than a half hour..

Still Feeling Violated

by PaulinSussex - 2020-08-21 06:48:26

Thank you for your comments.

Regarding consent, yes I did sign the form. I had a consultant and a doctor standing over me bullshitting for all they were worth. I was distressed. I was not given the information to make an informed decision. I was given very binary options, either a) near certain death or b) have a pacemaker which will see me skipping ontot he sunlit uplands of later life. No discussion of middle ground options, no discussion of recovery of damaged node, which is what seems to have happened. It felt very much like being raped at knifepoint.

I still can't extract data from the pacemaker clinic. I contacted PALS who asked the PM clinic to contact me. Instead they contaced the consultant who butchered the ablation. He called and spent half an hour trying to persuade me to come in and let him destroy the node he had already wounded. Because "we have the luxury of a pacemaker" that was apparently the only sensible route forward - leaving the option to use drugs to prevent tachycardia and the pm to deal with bradycardia.

At no point has anyone comunicated with clarity, they give the information that leads the patient to make decisions that give the consultants an easy life, not to give the patients a minimally invasive, minimally drugged existence. I have had great faith in the NHS in the past but the culture just stinks. So much controlling behaviour - is that why people of all grades get into nursing?

My concern right now is that as time passes the scar tissue is building up around the leads, presumably the longer they are in there the harder they are to remove?

I am interested to hear that I should have been 'out' for the electroshock treatment at the end of the ablation. I had two nurses holding onto me, one on my shoulders and one on my head.

Find another Cardiologist/EP as soon as possible

by Gemita - 2020-08-21 08:28:33

Paul, regarding extracting data, officially ask for access under the Data Protection Act 2018 or Access to Health Records Act 1990.  They cannot refuse you this access.  I used to keep asking for data from my pacemaker clinic (in writing) and it was never forthcoming, but if you apply formally, they have to send it to you.  Each hospital may have their own procedures to follow.  I am under Guy’s and St. Thomas’ hospital, London and I have requested this on line and there was no charge for it since it was sent to me on a disk for computer use.  Don’t bother with PALS (sorry PALS) but a complete waste of time in my experience.  (Check at your hospital whether there is an "Information Governance" office.  This is where I applied at Guy's and St. Thomas' hospital).  Search online for your hospital and contact them direct.  You don't need to go through your consultant.

When you apply for your data, you have to be really specific about what you want:  like all your pacemaker data to date, to include information like % time in say Atrial Tachycardia, highest/lowest heart rates recorded, duration of arrhythmias and so on.  Think about the kind of information you want and ask for it.  Ask for any recent data from Event monitors/blood pressure monitors, Echocardiogram, MRI, CT Scans, blood tests you have had and ask for a copy of all these investigations.  Specify, specify, specify exactly what you want, otherwise you may not receive it !!  If you have the dates of these investigations in your diary, so much the better to assist them.

Really sorry you had such a negative experience.  Mine initially wasn’t much better until I changed my cardiologist/EP.  It seems in many clinics over here in the UK certain palpitations/arrhythmias are not regarded as a serious problem until it starts to be one and we have to fight all the way to get answers and to prove that we are really so symptomatic.  It isn’t easy, is it.  Arrhythmia clinics are swamped with patients like us and I do not think they always know what to do with us.  Sad, but true.

When you have your data, you can then be free to seek a second opinion and leave it to your new doctors to advise you on the best way forward.  I would focus on getting urgent advice first before following up on what you clearly feel was negligence on your current team’s part.  I was still under sedation when I was shocked.  Sounds to me as though you need to write a report of all your grievances and send either direct to the hospital for response, or engage a legal team, although personally I wouldn't use your precious energy on trying to fight them.  I would rather find a new Cardiologist/EP and deal with your most pressing issues but place on record your concerns about the way you were treated and ask for an apology and explanation of why your experience was such a negative one.

Out for the DC Cardioversion

by AgentX86 - 2020-08-21 08:32:38

Everything you've said, other than not being told of possible negative outcomes (rare but you drew the short straw) nothing you've said is that far out of line... Except that the intentionally cardioverted you without anesthetic. Here that would be considered malpractice. Everything else is unusual but not exceedingly rare.

An AV node ablation isn't the end of the world. I had one two years ago and even with some other serious issues between, I've never felt better in my life. Unlike your situation,  I have no (negative actually) atrial function at all. You may feel violated but life goes on.

Focus on what's next

by crustyg - 2020-08-21 10:53:05

You suffered a horrible experience and being cardioverted while unsedated is very unpleasant.

If you have heart block from a damaged AV-node from the ablation for arrhythmia then it's extremely unlikely to recover.  It's possible but unlikely.  The special conducting tissue has been destroyed and will be replaced with fibrous tissue - just like a scar on your knee.  While additional ablations are sometimes necessary for recurring atrial arrhythmias this isn't because the burned tissue recovers, but because adjacent tissue starts to conduct when it shouldn't, and provides another accessory conduction pathway.

Once you have your records - as we've advised above - you can have a look at your heart data and get someone else to verify the heart block.  If you have complete heart block (CHB), you're going to need a PM.  Yes, I know that some people with this condition can live for years without a PM, but it's a long way from ideal.  Some of the congenital CHB folk here were only paced in their 20s - and it transformed their lives.  I've lived with a purely junctional rhythm for two years (SA node failed, heart beating due to AV-node), but that is unlikely to be adquate for anything more than merely exisiting for you - and most of that lying down to avoid fainting.

The UK NHS will provide you with a second opinion and you're not the first person to have difficulties with their cardiologist/EP-doc.  I'm on my fifth.

But I'm afraid that you need to start focussing on moving forwards with your life.  Things aren't going to heal themselves, you aren't going to get back to where you were before the ablation.

As all of my numerous counsellors have told me over the years, anger only burns yourself.  I have more than an inkling of what you're feeling and it can be very self-destructive.

Don't take it out on the pacemaker

by LondonAndy - 2020-08-21 18:31:26

I don't know enough to comment on the medical aspects Paul, but it seems to me that things have gone badly, but this was happening before the pacemaker was inserted - it is not the cause of them.  So even if it is only needed a small percentage of the time, firstly as Gemita said it is still needed, and secondly it is a safety net to stop your heart going too slowly, or worse.

The body typically takes 6 weeks to do the main physical healing after an injury or surgery, so maybe things will improve naturally, though of course that wouldn't help in the short term.

I wish you well, and hope things will soon improve.

Thanks for your input

by PaulinSussex - 2020-08-25 07:57:03

Thank you for your response.

I have asked for all documentation and also the techniques and technologies employed in my ablation.

The fact here is that I have this lump sliding around under the skin on my chest which is uncomfortable and disconcerting. I understand a PM can be fitted under the pectoral muscle - that was never discussed.

They have taken from me much of what constitutes my life & identity, fitness to do an active job, I run a training yacht, and also my ability to weld. I am very much into 'making & mending', I have a workshop with machine tools and of course welding plant. I have three old cars I enjoy maintaining and modifying. During lockdown I built a gantry crane - lots of welding. Being unable to weld is a huge blow to this side of my life.

LImited physical fitness and no welding... doesn't leave much.

Update

by PaulinSussex - 2020-09-21 09:30:59

Hi all

Thanks to those of you who have offered support and advice.

The situation now is that the pacemaker was turned down to 30 a while ago. The data indicates that the pm is doing nothing, zero pacing.

However I feel dreadfully unfit. I can walk around on the flat but hills cause discomfort. I guess this is the damage caused by the botched ablation.

So as far as I can see the pm is redundant, unfortunately so am I...

Can anyone recommend a good hospital in UK for pacemaker removal? Apparently harder to remove than to install. I am hoping to have it taken away in December to minimise disruption to my business.

Paul

by Gemita - 2020-09-21 11:09:06

I would re-post as a separate post which hopefully will give more people a chance to respond.  I only by chance saw your update.

I attend Guy's & St Thomas' hospital in London, but I would ask for a referral to Royal Brompton & Harefield heart hospital which I believe is one of the best

 

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