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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Wrighty39
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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.
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
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.
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.
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.
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.
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 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.
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
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.
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
Hi Wrighty39 and I'm sorry to hear about your problems with your pacemaker and unhelpful response from your cardiologist – it sounds like the main problem has been communication.
You say "EF >30 and a CRT-D in Oct. 2015" but you don't seem to understand what this means. It means you have a very weak heart, damaged by a heart attack or cardiomyopathy (often caused by a virus), with less than half the "horsepower" of a normal one, let alone one that has been trained for cycle racing. So it's not surprising that you can't do much heavy exercise, however well the pacemaker is adjusted.
Obviously you should have the settings of your pacemaker adjusted for optimum efficiency but in the context of a damaged heart this is not necessarily the same as for an undamaged one. In particular many diseased hearts have "diastolic dysfunction" (measured on echocardiogram) which means it cannot relax quickly. So if the maximum rate is set too high there is not enough time for the heart to fill up before pumping the blood out, and the efficiency drops.
I appreciate it's very frustrating for you but it's not likely you heart is going to get stronger so you just have to get used to living within your physical limitations. You need a cardiologist you can communicate with (and of course it's a two-way thing) – it is accepted (even in the NHS) that everybody is entitled to a second opinion, so ask for it. Then ask why you can't do the exercise you want to and why your pacemaker has been set the way it is, and listen to the answer – and if you don't understand , ask again.
I hope you don't mind me being a bit blunt, but your problems have evidently been dragging on for years and I think that it's important to clarify the situation.
Intense exercise can "promote AF" in several ways (slowing sinus rate, increasing vagal tone, increasing LV stiffness and left atrial size) but if you already have permanent AF it doesn't necessarily make anything worse. I have a 69 year old patient who had complete AV-node ablation and a pacemaker (simple VVIR type) over ten years ago and he still cycles to the top of Alpe d'Huez. It all depends on the general state of your heart: If you have "lone AF", i.e. nothing else is wrong, you do not have to restrict yourself at all. But if, like Wrighty39, the left ventricular function is down you should be sensible about how much exercise you attempt, and only do what is comfortable.
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