what pacemaker settings should I have ?

Hi

I have just joined having had a pacemaker (St Jude Medical PM2112) implanted one week ago. I live in the UK (North Yorkshire).

I've been advised I must not exercise for six weeks. I'm concerned what happens when I start training again.

I race two ironman distance triathlons each year, as well as a couple of half-ironman distance triathlons.

I am age 61 (almost 62). At the age of 12 I had "growing pains" (rheumatic fever) which caused a leaky aortic valve (diagnosed around 25 years ago) but no problems caused by it until recently.

In October 2012 I had a TIA (mini-stroke) - confirmed by MRI scan - and the assumed cause was atrial fibrillation. I am aware I have paroxsymal AF, but it is infrequent and usually lasts only a few minutes and doesn't generally cause me a problem.

I now take an anticoagulant (Dabigatran).

My leaky valve has deteriorated and I now have aortic stenosis (as well as the long-standing aortic regurgitation). I have been told I will need a replacement valve in the next few years, but not yet.

My max HR has dropped hugely in recent years and is now only high 140s (varies slightly depending on sport).

My resting HR was around 42-43.

Less than two weeks ago I noticed an inability to raise my HR and I was diagnosed with A-V block. (My HR briefly fell to 15.) The symptom which caused me to see doctor was inability to raise HR to even 100.

My pacemaker has a minimum rate of 60 now, so it must be increasing my HR almost all the time. Does this matter?

Should it be set lower?

What is the significance of it being at 60 rather than at say 40?

My pacemaker has a maximum setting of 130. Why has this been chosen?

Should it be set higher?

Does it matter?

8 Comments

settings

by Tracey_E - 2013-06-07 09:06:10

If you primarily have av block, that means your sinus node works well on its own but the signal doesn't make it to the ventricles. The min rate in this case is irrelevant and 60 is a standard setting. That's for atrial pacing and odds are your atrial rate won't dip that low on its own so it doesn't really matter where it's set. In your case, all you need is the pm to tell the ventricles when to beat so they stay in sync with the atria so you will mostly be pacing ventricles.

Upper limit of 130 means the pm will pace the ventricles up to 130, so if the atria does 150, the heart will still be out of sync. 130 is a common starting point but many of us who are active need it higher than that. Best way to find out where you need it to be is see how you feel once you are cleared for exercise. With the stenosis and regurgitation, they may not want you higher than 130. Discuss it with your dr. Sometimes a treadmill is helpful, let him watch what your heart does on exertion and adjust your settings accordingly.

settings

by Tracey_E - 2013-06-08 02:06:18

It's highly likely you had the block a lot longer than 2 weeks. The only way to diagnose it is to be in block when they do an ekg so it's common for people to have it undiagnosed for years.They can't tell by listening to the heart, and if the block is intermittent they can do an ekg and miss it.

An easy way to tell if you are pacing a lot atrial is to look at the pm interrogation report. If it shows little to no atrial pacing, then your heart is going that fast on its own. If you are pacing, then it's not really a bad thing. Go by how you feel. If you are pacing that much and feel good, then let it alone. If you feel like it's a problem, ask them to turn it down. They probably won't go as long as 40 but see if they'll switch it to 50 for a while.

Upper limit, 130 is standard so they probably put it there out of habit because the average pm patient is sedentary and never needs it higher than that, or they're otherwise sick and it's not good to let them get higher than that. Just ask, turning it up is not a big deal. You also might want to ask for a copy of the interrogation report so you can compare it between visits.

lots to learn

by ironmanjon - 2013-06-08 03:06:19

Hi Tracey

Thank you again for a very helpful and reassuring reply.

There is lots and lots I need to learn.

What caused me a problem two weeks ago was inability to raise HR and breathlessness on slight exertion. Given I train all the hours I do (or rather did), and also my general body awareness as an athlete, I'm confident I haven't had symptoms like that before.

But I understand an ECG (British spelling) might not pick up intermittent electrical problem. Following my TIA, AF was suspected but never captured on ECG despite numerous ECGs and once being monitored continuously from Friday to Monday. (A slow AF has now been captured.)

I don't understand why lower limit on pacemaker is so unimportant. I feel fine with it at 60 but given my resting HR has always been lower, in my brain it feels wrong to keep it at 60 now. But you explain it doesn't matter??

As for the high limit, how high can it go? Can it go above what was my max HR in the high 140s? (It had become very low for my age due to huge drop in last year or so.)

Can it go to 160, which is where I think it should be?

Can they put it at 180 and make my heart much younger? It would do wonders for my VO2max !!

I see you answer all the queries Tracey and so I realise you will have little time for my further stupid questions, but I'm very grateful for anything you can add to my understanding.
Jon

thank you but still puzzled

by ironmanjon - 2013-06-08 04:06:56

Hi Tracey

Thank you for your helpful reply but I'm still puzzled.

My A-V block started only two weeks ago. For many years before then my resting HR was low 40s (or even lower), due to the many hours I spend each week training.

So doesn't that mean my atrial rate is much lower than 60 and the pacemaker is keeping it artificially high?

And if so does it matter?

More worrying to me is the limit on my max HR. I can't train and race as I used to with a max HR of only 130.

What is the reason for limiting it? (There was me hoping the pacemaker might put my max HR back to 180 !!!)
Jon

questions

by Tracey_E - 2013-06-08 05:06:12

You can ask all you want! I’m a fast typist :o)

It’s not that it doesn’t matter what the lower limit is, it’s that with block, most of us have a sinus rhythm that’s higher than whatever they’d set the lower limit at so we never hit it. Lower limit is for atrial pacing, av block is treated with ventricular pacing.

The most common manifestation of block is not what you had, not going up with exertion, it’s usually a low resting rate and dips/pauses at rest. You could have had that for years but not noticed it until it got worse and affected your exercise. There have been many people who came here after they got their pm who were told all their lives that they had an athletes low hr when in fact it was undiagnosed block. I know I was told that multiple times, which made me laugh because my block was found when I was 5 and I was never allowed to do any sports before I got the pm, so the drs who told me I had an athletes heart were full of it and needed to read my chart.

I don’t know which it is with you and I’m not saying you don’t have a very low resting rate naturally, I’m just pointing out that if it *was* undiagnosed block all this time, it’s your sinus node doing more than 60, not the pm keeping you at 60. It’s really easy to tell, ask them if you are pacing atrial or ask for a copy of the report and look for the number that says AP (atrial pacing). If this number is large, then ask them to turn it down lower than 60. If you are not pacing atrial, then it’s all you and there’s no way to slow it down.

I can tell you the fast rate feels weird at first. My hr never went above 44 my whole life and it dipped to the 20’s right before I got the pm. It never went under 80 the first year I had the pm. I felt like I’d been mainlining coffee! It wasn’t a bad feeling, just super charged. (I kinda miss it, could use it now!) The feeling went away, now I’m level with a resting rate mid 60’s and it feels normal to me.

Most pm’s max out at 180 so yes if your dr is ok with you getting up that high then the pm should be able to handle it. You don’t want it set right at the level you work out, have it just a little higher. Mine is set at 175, I usually get around 165 when I work out so that gives me a cushion.

I saw a cartoon once, "doc, can’t you just program it to do 150 for 20 min a day instead of making me go to the gym??"

more on settings

by ironmanjon - 2013-06-08 06:06:41

Hi Tracey

A huge thank you again.

For the lower limit I'll ask as you suggest when I have my first review after six weeks. (I do notice that with the pacemaker my HR seems to be exactly 60 most of the time - certainly all the time when I'm in bed or sitting at my desk - which makes me think that isn't my natural rate.)

I'll also ask about the upper limit. My natural upper limit has fallen to high 140s so it would be great if the pacemaker can make it higher and increase my VO2max that way. (I have a feeling that won't be allowed to happen.)

I haven't really exercised yet - it's forbidden for six weeks (four weeks and six days to go) - but from a bit of walking uphill and going upstairs I have the impression the pacemaker is slow to react to any exertion. Can the pacemaker reaction time be speeded up?

If so is that a good idea?

I read with great interest your posting on another query about exercise after the six weeks. My daily exercise routine (usually around 15-20 hours a week of mostly low intensity) comprises swim + bike + run (of course) and also weights and indoor rowing. I hope I'm told I can do all of these - as you do crossfit you are obviously very tough and don't limit what you do.

(I'm also told that in the next few years I'll need an aortic valve replacement so I've got myself in a "state" reading about that.)

Thanks again Tracey.
Jon

going up

by Tracey_E - 2013-06-08 07:06:10

The pm isn't taking your rate up so there's nothing to adjust there. People with sinus problems depend on rate response to get their hr up with activity. With block, the sinus node should be doing its thing normally, all you need is for the pm to keep the ventricles in sync. If anything, ask if they have rate response turned on and ask them to turn it off if it is on. Sometimes they leave it on assuming we won't use it but it ends up competing with our heart's natural rate and makes it hard to exercise. Well, I guess you could use rr to raise your rate higher but really, that's a whole can of worms and my guess is instead of what you want, it would make you crazy.

Keep in mind that your heart got messed up so it's going to take it a bit to get used to pacing and being in sync again. It probably will never go up/down like it did before and those hr charts may not apply but a lot of times the changes are for the good once we get used to them. I don't pay much attention to where my hr is when I work out. If I can sing along to the ipod, I'm not working hard enough. If I am out of breath but can still talk, if I'm sweating hard and muscles burn, if I'm not dizzy, then I'm in my good range, whatever the range is that day. Stopping to count just gets in the way! I've been living with this all my life, been paced since 1994, so I'm a lot more blase than a newbie ;o)

If you are at exactly 60 a lot of the time, ask them about turning it down to 50. I doubt you can talk then into 40 right away so start with 50.

The valve sucks! But the surgery has come a long way, lots of time they can do it with a cath instead of open heart. Just keep yourself in the best shape you can. I don't care how bad I feel, I don't care if I have challenges, I WILL work out as hard as I can as often as I can. I figure the best defense we've all got is to take care of our bodies, eat right and work out hard. My gym just got new shirts in "eat clean, train dirty".

I do not limit what I do at all. I know not all drs approve of this, but my dr is ok with it, my St Judes rep agrees, and so far so good, no problems at all. I've been going to Crossfit for 2 1/2 years now. I went in to it honestly not expecting to be able to keep up but I do ok. I'm often the last done, but by golly, I do it!

impatient and obsessive

by ironmanjon - 2013-06-09 06:06:27

You're amazing Tracey, and an inspiration. Especially your last paragraph. Thank you.

Like most athletes I'm both impatient and obsessive.

I rarely train without HRM. (Every session is at a specific HR for a specific purpose.) I never race without HRM. (Otherwise, in ironman especially, I would use up way too much energy in the first two or three hours and never make it to the end.)

By the way I saw your post about it being ok to use HRM with PM but it might not work. So I have tried one of my HRMs and it seems to work fine. (Not that I have exercised properly with it yet of course.)

My poor body has been through a lot recently. PM implanted 9 days ago. I started Dabigatran (anticoagulant) six days ago. (I was very nervous about taking Dabigatran - I'm the sort of person who doesn't like to take anything, not even an aspirin. Thankfully no side effects yet which are too horrible such as bleeding - just a slightly upset tummy.)

So I need to be patient, do as I am told, and discuss all my questions on the settings when I have my review in five weeks.

The valve surgery when it comes will be proper surgery. From what I have read the alternatives are a lot less satisfactory and are used only when the patient isn't well enough to cope with surgery.

The prognosis with an artificial valve looks bad too - see http://heart.emedtv.com/aortic-valve-replacement/life-expectancy-after-aortic-valve-replacement.html. But then again this is a lot better than without it.

When I read your comments in your second and last paragraphs and I realise you do all you do with a PM for almost 20 years - well Tracey I do want to say you have helped me a lot at a time when I'm feeling rather shocked and fragile. (The news about AF, valve replacement and then pacemaker has all come in the last three weeks.)

I feel very fortunate to have had the benefit of your comments. I see you help lots and lots of people and I do want to say how much you have helped me.
Jon

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

Member Quotes

I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.