Pacemakers and the hollowing out of life

Hi,

I've just joined and would like to know how many of you have experienced the massive deterioration in quality of life I have.

In 2005 I had my first pacemaker from when I experienced a steady deterioration. Before insertion I had ridden bike races, winning my last race in 2001, riding Paris - Brest - Paris 1999, Etapes du Tour (de France) 2000 and 2001. By 2004 I had stopped racing because I could not rely on my 'form'. I could still give others I rode with a 'hard time' but I could not rely on my ability to respond when racing.

From 2005 on I made repeated complaints about the settings and had numerous tests. Only when I consulted cardiologists who had no responsibility for my 'case' was I told that I had the 'wrong pacemaker for' me, that the pacemaker was set 130 bpm paced maximum 'inappropriate for any athletic performance'. They were recommending a CRT but realised that NICE would not sanction it.

Replacement 2012, pacemaker failing by 2015, EF >30 and a CRT-D in Oct. 2015. No improvement but I did manage the rehab. 12 week prog. April to July. However, I was told I had a heart attack in April and put on anti tachycardia Drugs (Apixaban) had a fall and find my pulse will not rise above 72 bpm even when 'exercising'. Over the year exercise has come down from 40 - 50 minutes of steady medium effort om a stationary bike to 5 mins. on a treadmill or bike after which O'm breathless.

My cardiologist's response is 'well I'll take it out then. For some time I have been refused information on my pacemaker clinic check-ups and decisions made about me have never been 'fully informed'.

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32 Replies

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  • Sorry Wrighty but since this forum is for people with Atrial fibrillation I doubt we could comment. OK a few do have pacemakers inserted to help with low heart rate due to drugs but nothing like your case.

  • Dear Bob,

    I thought the D in CRT-D was for defibrillation as in atrial fibrillation and that the site is for a rather wider range of conditions than for your particular condition?

  • Defibrillation is not relative to atrial fibrillation. which can not generally be treated with a pace maker . The defibrillation considered is ventricular fibrillation when the lower not upper chamber is affected. I just feel that you would be better served finding the Healthunlocked forums for Pacemakers or ICDs. As you have seen plenty of sympathy but little new knowledge.

  • Thanks for putting me straight on the different fibrillations. I have joined pace maker club but have found informative material on HU including yours.

  • Sorry to hear what you have been through. Under the Freedom of Information Act you are entitled to request all your medical notes. Contact your local Trust and ask what their procedure is for making the request. Then you could ask for a multi disciplinary meeting with your specialist team and GP to clarify all information. You could also issue a formal written complaint if you believe you did not give informed consent for your treatment. Do you have a patient and client counsel in your Trust who could support you through this process? Best wishes

  • "Under the Freedom of Information Act you are entitled to request all your medical notes."

    You're entitled to request anything you like, that doesn't mean that you're entitled to be given it. I'm entitled to request the launch codes for Trident missiles...........

    You have no statutory right to see your records, they can withhold anything that it's "not in your interest" to see, and there's no independent body who will decide whether they're withholding the documents in your interests or their own.

  • Notes can be redacted but there has to be damn good justification for doing this. I have never heard of anyone being declined their medical notes. There is indeed an independent regulatory body where I live who ensures clinical governance and redaction practices would come under their remit. As far as I am aware, QCs can also request Privacy Orders to obtain information from Trusts if a case to obtain medical notes were to be pursued down the legal route but I am not certain about that because as I say, I have never heard of anyone being declined their medical notes.

  • I think you misunderstood me or perhaps I didn't make it clear. I have had medical notes when I have applied. Clearly some things I thought relevant were missed out (not redacted) and some things expressed in a form that used a vocabulary with which I am not competent.

    What I was objecting to was instructions to technicians (?) in pacemaker clinic to refuse to give me copies of results at routine appointments as they had been doing.

    On one occasion my cardiologist instructed the technician to set upper limit pacing at 130 not 180 without me being informed. It was restored when I found out. I was unwise I could have got the information for £10 instead of £100+.

  • "I have never heard of anyone being declined their medical notes."

    Well you have now.

    They never say anything as explicit as a refusal, they just give you the runaround with an endless series of obtuse excuses.

    "We didn't send a copy because the form is blank" when they've already sent hundreds of pages of blank forms. Then they'll pretend they don't know what you're asking for after you've already been arguing with them for over a year. They'll ignore letters until you send another copy by recorded delivery. When I ask why not copy the blanks, they send a form for requesting medical records eighteen months after I filled one in, paid the fee, and received a written acknowledgement. When I complain to the Information Commission they fob me off telling me that they have to accept what the NHS say at face value because they have no powers of enforcement.

    That's just a recent example, I'm still trying to get copies of other records that I've been trying to get access to for the last 20 years.

    I've spoken with someone who had to abandon legal proceedings having spent his entire life savings on legal fees without ever gaining access to his records. When he subsequently had a heart attack they couldn't treat him safely because all his notes had been "lost".

    The NHS complaint system is corrupt.

  • That's really terrible. I just don't understand how practitioners and some health care Trusts get away with that dangerous Standard of practice. I work for a Trust and we are very very transparent and regulated and audited by an independent body to within an inch of our life! Best wishes and sorry to hear what you have been through

  • Have you seen what happened to Mary Kerswell:

    bbc.co.uk/news/uk-england-b...

    Arrested in handcuffs for insisting that the errors in her records be corrected.

  • This looks like she was arrested for staging a sit in protest rather than for demanding the errors be corrected. In any case ectopic 1, I am not trying to prove or disprove how efficient the NHS is, I was merely trying to point out to Wrighty what his rights are. Best wishes.

  • Turning the faults of the NHS back onto the patients is typical of the NHS, she wouldn't have needed to protest if they'd corrected the errors.

    In Aug 2014 I noticed that my records said that I had already had my ablation when I was still on the waiting list for it. Time and time again I told them, but they did nothing. When I complained they denied it, when I sent a copy of the document they just ignored it.

  • Again.. Sorry to hear what you have been through. I am not going to sit here and portray that the NHS is flawless or completely free of corruption. I work damn hard as a nurse and get paid for full time hours when in fact I work about 50 hours per week. So we're not all bad ectopic1 and I believe in the NHS. Again.. I was only trying to offer Wrighty some advice on his rights to help resolve his situation. Maybe we should focus this thread on Wrighty again. You could take your complaints forward to an Ombudsman or the media. Best wishes

  • I'm not suggesting that the NHS don't do a lot of good work, clearly they do, but the issue I have is with the corruption of the complaint system, so I'm just making sure that misinformation about the way that system works doesn't go unchallenged.

    You mention the ombudsman, but the Ombudsman rejects 99% of complaints, 98% without any investigation. I’ve already referred to them twice in the 18 months my complaint has been running but they’re just fobbing me off and passing the buck back to the hospital.

    It might interest you to see what the MPs who created the Ombudsman had to say about it at the time, here’s a quote from Hansard on 24.1.67:

    “The Bill was always drafted to be a swiz, and now it is spelt into the Bill…………Anyone who contemplates an office of this kind is faced with the dilemma of making it either a Frankenstein or a nonentity—a Frankenstein if it has effective powers and a nonentity if it has not. The Government, quite rightly, has opted for its being a nonentity, and in that sense it is a fraud……… I congratulate the Government on its being a nonentity. A Frankenstein would, I think, have undermined the power of Ministers......”

    So there you have it, congratulating themselves on setting up a fraud, a swindle and a nonentity. Scotland Yard started investigating the Ombudsman on 30 counts of Misconduct in Public Office for failing to conduct proper investigations, but within weeks of them commencing their investigation the Government announced plans to scrap the law of Misconduct.

    You suggest the media, but I have already been warned that I’ll get smeared if I go to them, like everyone else who speaks against the NHS. Julie Bailey was driven from her home by a hate campaign when she tried to improve standards at Mid Staffs.

    hansard.millbanksystems.com...

    hansard.millbanksystems.com...

    phsothefacts.com/misconduct...

    lawcom.gov.uk/project/misco...

    bbc.co.uk/news/uk-england-s...

  • Just an update to this post:

    Scotland Yard had to abandon their investigation into corruption at the PHSO because the legislation that created the Ombudsman service prevents the Police from having access to the files. The pretext is patient confidentiality, even though it's those very patients who filed the complaints with Scotland Yard in the first place, so the PHSO is effectively above the law.

    As the quote from the gloating MPs above says, a fraud, a swindle, and a nonentity.

  • Thanks for the advice. I did have a similar though rather narrower 'case conference' some years ago. Narrower in that it only included cardiology and not endocrinology, urology, gastrointestinal and endoscopic, and ophthalmology clinicians. Medicine is a collection of 'silos'!

    I did overlook the client counsel?

    Should I go down this road in the future I'll remember what you write.

  • I'm not in the "althletic" class but post open heart surgery and cox maze for AF my heart rate would not go above 40 lower yes higher no. After several months of giving heart time to heal a pacemaker was fitted. That was great kept me paced at 60. However trying to return to exercise wasn't great so it was tweaked and now will go to s max of 125. Presume yours was for bradycardia so no benefit in removal surely?

  • Thanks Frills. Yes it all started with bradycardia. My natural resting is 52-53 but as a cyclist this is high. Sean Kelly/Hinderine(sic) were 28, Armstrong 35. I had syncope at 35bpm. However, I'm on a 'anti tachycardia programme' which, I believe, kicks in at 180bpm, which was my max paced limit before the CRT-D. Wether or not it was an inappropriate 'shot' I got at 197 in April I don't know I only have my cardiologist's word for it.

    Thanks again for your reply.

  • Hi I have no pacemaker like you, just AF, but I do share your experience of losing the ability to cycle and an obstructive NHS. I don't know whether it's my AF that's at the root of my exercise problems, or whether (as I suspect) the root cause of the problem is decades of overtraining, and the AF is just one of the many symptoms that follow from it. The reason I was unwittingly overtraining for years is that the NHS were telling me to ignore my symptoms and get more exercise, hence the reason why they won't accept there's any reason not to exercise now. (For the first few months after I was diagnosed they denied that they had ever seen anything wrong, and even denied that I had been taken to A&E.)

    Complaining against the NHS doesn't get you anywhere, but if you tempted to give it a try I can give you all the ins and outs of the system.

    I'm rather bemused to see that you were able to win races and yet your RHR was only 52-53. When I was still training my RHR was 40-42, and yet my average speed long distance touring was only about 8 mph! On hill climbs I used to be down to 2.3mph, and yet the NHS insisted that I was "super fit". 13mph was gut-bustingly fast for me, and only for short one-off rides.

    Do you know what your Bruce time was when you were fit? I managed 13 mins a couple of times, but they both left me feeling lousy. My AF started after the first one in 2009, and it was the second one in 2012 that led to the deterioration that got my AF diagnosed when it put me in hospital a few weeks later.

    It's six years now since I was last able to tour, and it's getting me down, so I know how you feel, and of course, I can't turn to the NHS for advice on how to resolve the issue because they deny that there is any reason not to exercise.

  • I found your reference the possibility that the root cause of your problems and maybe mine is years of overtraining. I suspect that you have read the article in the Guardian? which suggests that long periods of exercise at a constant level may compromise the working of the heart We should remember that such research that has been done has been on mice and that it is early days. Your description of your cycling (exercise) would seem to fit the model closer that mine and much closer than Wiggins who I think headed the article. Like you I did a lot of touring; cycle camping here and abroad, day rides at home. However, I suspect that my, riding apart from racing, was much more varied. Many of the day rides were training for road racing and in company and often included long stretches of steady riding but changes in effort as stronger and weaker riders took the lead. There would also be sprints for whatever and climbs that could be competitive or done at ones' own pace.

    Wiggins' riding I guess would be even more varied and guided by what sound science there is and experience. The one thing that does seem to have taken hold is that in the past we did too much; to long and too slow and insufficiently varied. But everyone should do some touring!

    Finally on RHR. We are all unique. I know your RHR is pretty low but you don't tell what your upper limit is so your range isn't available to me. I have friends with upper limits of 210 and 215, Armstrong's was 205 with a RHR of 35. I'm in syncope at that rate. Take no notice of what clinicians say when they talk of 'fitness'. They've got the whole population in mind which is irrelevant and comes from elevating mortality too far above morbidity.

  • Guardian? Noooo, newspapers are the absolute last place to go if you want to research science.

    I always read the research itself, then you have the information straight from the horses mouth. The work isn't based on mice, there are loads of papers published, all studies on humans.

    The state of play at the moment is that science is reluctant to reach a conclusion because the studies are statistically weak, either prospective studies with small sample sizes, or retrospective with loosely defined control groups. The putative causes are still only hypotheses at this stage too. That said, the majority are pointing in the same direction: chronic endurance training increases the risk of developing AF. The European Society of Cardiology list endurance training as a major risk factor for AF, albeit provisional.

    I have a large reading list of research on both AF & sport, and Overtraining Syndrome which you're welcome to if it's of interest.

    At the time I did the Bruce tests I reached 220-age (170bpm), but the problem is not that I can't get my HR up there for short durations, it's that I have no tolerance of it. As I said the tests precipitated the AF and left me feeling very unwell. In a real-world scenario such as climbing passes in the Lake District for example, I might be able to give it some stick once, but I would pay for it afterwards by being unable to recover. That was always the problem, all it took was one ill-judged burst of high intensity exercise during a moment of overenthusiasm or overconfidence and it might take months or even a year to recover.

    After I was diagnosed I quit cycling altogether for months, and felt fitter than I had for years after the fatigue had worn off, but as soon as I tried to resume training I was back to square one. Now after six years without any effective training I've lost all my fitness, but I start regressing again every time I let my HR go over about 100bpm. My maximum HR on the meds is about 125-130, but it takes months to recover if I let it go that high. Walking on flat canal towpaths, I can keep going all day every day at a HR of 85, but if I go over 100 I can't risk much more than about 5 minutes a week without being unable to recover.

    I don't take any notice of what clinicians say about fitness, the problem is that they take notice of each other.

    You mention cycling with others, but I've never been able to achieve sufficient fitness to keep up with others, which is one of the main reasons I'm so convinced that I wasn't as fit as the NHS insist. In my mid-20s I was swimming a mile against the clock three times a week, but my speed was about half that of a competitive swimmer, and when I went paddling with the local canoe club I couldn't even keep up with the children.

  • We are clearly very different physiologically and I'm amazed that you managed to maintain a commitment to any form of exercise for so long.

    Thanks for further contribution on 'endurance training'. I would like your list of references..

  • I've pasted the list on the other thread.

  • The 2016 Guidelines for the management of AF from the European Society of Cardiology now accept the link between sport and AF as orthodoxy:

    “Moderate regular physical activity is recommended to prevent AF, while athletes should be counselled that long-lasting intense sports participation can promote AF.”

    The evidence is categorised as Class I, Level A, ie. derived from multiple studies and a consensus that it's reliable.

  • Do they indeed? Reference please.

  • I have had a pacemaker since 2011. Was in intensive care for 3 weeks with heart rate of 268 when I went in. On the 5 th day my heart stopped hence the pa emaker. Normally at least here in the states PM are set at 60 bpm. However after 2 years my electrophysiologist changed my setting for some odd reason and after 6 minutes s of being in the hospital and almost dying. Metronics was brought in and as soon as they checked it knew it was set incorrectly! They changed it and it was fine. I had cyroablation a month later and all has been well except my heart does go fast at night. I still take Sotalol. You always have to challenge a Dr. If you have a problem. My first doctor was arrogant and didn't like to be questioned. Thank God I switched. Keep fighting to get yo the right person. I knew w your health care there is different. I wish you the best.

  • My starter was a syncope, the third in 12 years. In hospital I was told I wouldn't leave until I had a pacemaker. This took 2 weeks. Bed-blocking! The clinician prescribed a treadmill test for the following a.m.. While nursing staff noted I had no shoes clinician did not, prescribed some inclination and instructed me to run. The standard is for such tests to last 15 mins max. This one lasted 11 mins my feet were bleeding. Clinician left and there was no feedback. Prior to the insertion the lad clinician told his minions that he would set the pacemaker at 40 - 140, I didn't realise it at the time but this was what he did with all bradycardia cases. I timidly asked for the upper limit to be raised to 150 thinking of a fellow cyclist with the same max sliding out the back as soon as the road went up. He acquiesced. Later he was to do a Bruce Procedure which he stopped at 126 bpm. God knows what he got out of it.

    I only know one employee of a device producer and I can't imagine Michelle overriding a clinician. However, both my current cardiologist and my pacemaker clinic technician will not accept that my pulse remains at 70-72 while I become breathless and have to stop, within 3-4 mins of trying to exercise. They seem to believe that a pulse that doesn't change from lying in bed to an effort which causes distress is 'normal' and that a device costing £16000 + is working fine.

  • Wrighty do you think your pushing your limits to the extreme?

    I have AF and a Pacemaker of which I'm now dependent on after having an AV Node Ablation.

    Congratulations on your history of cycling. Perhaps the time has come to be realistic that you won't return to your previous level of cycling even on the exercise bike?

    I'm not sure Apixiban is an antiarythmic drug but more an anticoagulant to help prevent clots.

    It does sound like your pacemaker needs adjusting so I suggest finding another Cardiologist/technician who can provide a second opinion. My Cardiologist is also qualified to adjust Pacemakers

    The website to go to for those who want more info is a forum called 'pacemaker club'

    I'm on that one where you can share your situation and get great feedback.

    All the best

    Barry

  • I don't accept your recommendations about 'giving up'; that way lies misery.

    Your talking sense when you say get another clinician which I have done causing some ruffled feathers and cardiologists slagging each other off while using first names to do it. But it is so slow if one does not have huge resources. And of course there is NICE and their fix with govts. to maintain private practice and very high incomes.

  • My doctors are trying to have their cake and eat it. On the one hand they tell me there's nothing wrong and no reason not to exercise, but on the other hand they try to make me feel stupid for expecting to do what any normally fit person can do:

    "Well, what did you expect to do, carry on cycling until you die?"

    I don't expect to win races, I'd just like to return to touring, and if I could keep up with other touring cyclists that would be a bonus.

  • It's not nice to feel you have a massive deterioration in quality of life but do you not see yourself as a challenge to the medical world because you have reached heights that few achieve? As a race winner, better than all the others, your heart has done more to speed you forwards that anyone else's has done. As you are exceptional perhaps it's difficult to get it right for you.

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