Choosing a pacemaker that copes with serious cycling?

Retired pathologist, working in Enterprise IT selling £M software packages.

Keen road cyclist, 6years + sick sinus syndrome, given up competitive running (Pilates instead), and my cardiologist has given in and said I can have a pacemaker.  Resting rate about 38, max HR 110bpm which is very limiting.

Apparently some Boston Scientific units support measurement of breathing rate (RightRate-TM) as well as accelerometer for running and swimming.

Anyone with experience of breath-rate input to adaptive pacing willing to share? Pros, Cons, experiences - good and bad?

Thanks.


10 Comments

Ones to avoid

by IAN MC - 2019-04-11 10:43:16

No personal experience of the Boston Scientific dual sensor PMs but I strongly recommend that you avoid accelerometer-only makes such as Medtronic and St Jude.

  I used to be a keen cyclist  but also developed Sick Sinus Syndrome . I can no longer keep up with my Lycra-clad  friends since getting a Medtronic PM  

If you do need rate response switching on  then an accelerometer sensor will certainly not detect enough upper body movement when cycling and an oxygen deficit quickly builds up.

I also  look forward to any comments from Boston Scientific cyclists.

Ian

Boston Scientific Pacemaker

by Skeet - 2019-04-11 11:37:46

Crustyg, I have a BS pacemaker  with minute ventilation. It will only be as good for you as your tech can set it for you. My experience is very similar to yours SSS and low pulse. If your resting pulse is not 60 or above your sick according to all doctors. Mine was 50 or below all my life and upper 30's when in good shape from running and cycling. I was first implanted in Sept of '07. Initial settings were 70 lower limit and 110 upper. Could not sleep pulse too high, could not cycle pulse too low. Within a couple of weeks they lowered LRL to 50 but it was about 5 years before I convenced them to raise my upper limit. Hope it dosen't take you that long.  After 11 and half years it is set better now, upper rate 170 and lower 50, but I still do not think my breathing controls any pulse rate. 

If you haven't read "The Haywire Heart" by Case, Mandrola, & Zinn it is a good read for all who have heart problems and exercised over the years. Keep cycling and good luck.

Skeet

PMs with heart rate adjustment from breathing

by crustyg - 2019-04-11 18:32:54

Thanks to you both.  I have anticipated the iterative negotiation that will have to occur to get what I want out of my PM - starting with max-HR.  Fortunately my physician is smart and a great listener, unfortunately for him I know a lot about this from 16 years of medical practice, and I think we are going to be learning together about how to program a suitable PM for the exercise that I enjoy.  I think stairs will always be a challenge, but I can cope with that.

It's ironic that all the time I was boasting to my running mates about how low my resting pulse was (because I was super-fit), when really it was as much my failing sino-atrial node as anything great that I was doing!

One of my cycling chums has recently succumbed to the temptation of an e-bike: she has battery assisted legs and I shall shortly have a battery-assisted heart!  Works for me.

The book is now on my reading list: thanks.

The Haywire Heart

by IAN MC - 2019-04-12 09:40:52

Skeet :   I have read the book and  , as you know, the message is that , although exercise is good for you, TOO MUCH endurance exercise can increase the chances of you developing cardiac arrythmias later in life.

If the book had been titled  " In view of the evidence, would you have lived your life differently ? "  , what would your answer be ?

Ian

Definition of terms - who is doing the programming?

by crustyg - 2019-04-12 13:48:34


Skeet: I've read quite a few posts from NA that refer to their EP (electrophysiologist?) and you seem to make a distinction between 'tech' and doctors.  In general is the person deciding the programming values and doing the setting the same person and if so, is it a proper MD or someone who does the delegated technical stuff?

Ian MC: what's your experience? Decisions made by your MD or all delegated to some non-doctor?

I sincerely hope that my EP - Board Certified specialist in cardiac rhythm disorders and an MD will be doing the deciding.  Not sure how happy I would be to have a non-doctor deciding to set my max-HR at any given value.

But perhaps that's something I shall have to learn to live with.

crustyg

by IAN MC - 2019-04-12 14:14:19

I think it depends on which country you are in.  I am in the UK and here cardiology departments have a breed of individual which doesn't seem to exist in some other countries,  These are   " Cardiac physiologists"  and are known as "techs" although they are all university trained with 3 yr degrees in health care sciences.

My experience has been that pretty well all PM programming decisions are made by these " techs" and this gives me absolutely no cause for concern.  In fact I get the impression that my cardiologist / EP has a very limited knowledge of the programming differences between different makes of pacemaker. Also here contact with the cardiologist is very infrequent once a PM has been fitted.

On one occasion my " tech" arranged for an engineer from the pacemaker company, Medtronic, to assist with the programming while I ran on a treadmill but this is not very common in the UK ( unlike the U.S I believe )

Which country are you in ?

Ian

 

 

Who does the programning....

by crustyg - 2019-04-12 16:04:51

Thanks Ian MC. I'm in the southern UK.

I half expected your answer and I'm ok with that - the tech who wired me up for the electrical mapping for my last ablation was clearly the expert on the equipment and it wouldn't surprise me if the same person actually did the PM programming.

I suppose I'm more worried about trying to negotiate max-HR with someone who doesn't understand my needs and drivers.  Saying No in life is really easy, it takes more confidence, knowledge (and sometimes, legal permission) to do something outside 'guidelines'.  So often guidelines become rigid rules.

It's maximum charm from me to get what I want.  Right now I'm not having life-threatening syncopal episodes, but clearly my SSS is a year worse than my first ablation.  Hopefully the conduction system stays working nicely for a few more years.

Thanks.

Well it's started.

by crustyg - 2019-05-23 06:28:53

Got my lovely top-of-the-range Accolade yesterday and the post-implantation programming session might as well have been straight out of Doctor in the House with Sir Lancelot Spratt talking to his Senior Reg about the patient at the foot of the bed as the PM tech and the BostonSci rep chatted about the various voltages and settings.  Reminded me of the R4 series 'Does he take sugar?' which summed up the same disregard for manners and patient involvement.  I had hoped we had moved past that.  But my EP was charming and polite as always and was the only person who actually talked to *me* about the PM settings.  Definitely a keeper!

On the positive side, it's wonderful to have a regular heartbeat again and so much better sleeping with 50 small beats per minute and not 38 huge thumps.

I have high hopes for this battery assistance!

Sensible cardiac output!

by crustyg - 2019-05-27 05:10:03

In all my whining about my PM not being set correctly (we had agreed atrial pacing only), I only realised yesterday that my lovely EP had fitted me with the -EL model.  What a charmer!

Finally got round to some exercise yesterday, and it was wonderful to have a cardiac output that matched what the muscles needed! Such a treat.

I'm already in a more positive frame of mind than a couple of days ago.  Just need to watch I don't dislodge that atrial lead...

Long may it continue.

My first tune-up - great success!

by crustyg - 2019-06-21 05:17:52

After a charming telling off from my EP ("you have a damaged heart and you have to accept that you may never get back to where you were"), we got down to it.  Charming young expert from BostonSci, we negotiated some changes to my PM and I got onto the (static) bike.  Warmed up, started working harder, but not enough of an HR delta.  Ran my newly acquired numbers through the software - great simulation on the programming box - set the new values, back onto the bike.  Better, but not enough.  Changed mode, more data, more sim, new values, back on the bike.  Zoomed up to the new maxHR, just a tad overcooked!  Shaded the values down a bit, reset, back on the bike, worked hard, then harder, looking good, then a final push for the 'summit' with bike on max resistance, standing on the pedals for about 20s, zoomed up to max HR and stayed there - and felt good,  Tired, but happy.

Smiles all round.  It may not be perfect - perhaps not quite enough accelerometer for swimming, but I never expected it to be perfect after one tune-up.

Life is good, even if getting older has drawbacks!

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