Getting back to fitness

Hello there

I'm a 62-year-old, and until earlier this year I was pretty fit, did 1 or 2 5km runs each week and walking/Nordic Walking a lot.  I started getting dizzy spells in the Spring, and in August was diagnosed with complete heart block and fitted with a Biotronik pacemaker.

I've found it really hard to get my fitness back since, often feeling tired (although not dizzy) especially on steep climbs when hiking.  On these occasions my heart rate (as measued on my Garmin watch) remains pretty low, say 70-80, yet I am completely out of energy.  I sort of thought that, if I am out of breath, my heart rate would rise to compensate, but often it is not.

It's only been 3 months so perhaps I am expecting too much, but I have managed only 5km run since the pacemaker, and am a bit disillusioned.

I'm in England, and our NHS is on its knees.  If you're at death's door they'll fix you effectively, which is how I got the pacemaker fitted quickly; but there's no really facility to "call your clinic and discuss" as correspondents here from other countries seem to be able to do - there's just not the bandwidth to help the (probably!) worried well.

I'd be interested in other active people's experience post-pacemaker.

Thank you for reading.


11 Comments

Pacemakers require adjustments for exercise

by PacedNRunning - 2023-11-26 21:23:03

Sounds like you may need an adjustment.  These devices often need adjustments specifically for exercise. 

 

I would keep up the pressure

by Gemita - 2023-11-27 06:19:41

Hello Valiant, I know exactly what you mean about the worried well patient seeking advice here in the UK.  

Reading your message and briefly glancing at your earlier post, I do feel that you need to work with a Biotronik pacemaker representative while you are perhaps on a treadmill.  They will know their own manufacturer device best.  They can observe what happens to you as you try to get your heart rate up during exertion.  It sounds as though you might have some intermittent chronotropic incompetence or difficulties when you reach your maximum tracking rate and your settings might need adjusting.   I note however that sometimes you can achieve 120-130 bpm with no breathlessness, so it clearly doesn’t happen all the time?

I am under a very good London Hospital (St. Thomas’) and they have plenty of excellent EP’s and technicians who do a grand job but it hasn’t been easy to get them to listen to me since I am older and less active than you and they tend to want to leave well alone.  They tell me to leave the technical stuff to them and not to worry, but these sort of comments are not helpful, are they?  I have fought back by educating myself and it has made such a difference to my care.  I have a Medtronic pacemaker.

Try to learn as much as you can about your settings and then go to your appointments with one or two specific questions to ask them.  Be firm but polite and let them know that while you are grateful to be alive and to have a pacemaker, you were hoping to have a reasonable quality of life and to be able to return to a more normal lifestyle, which includes returning to your usual activities.  You clearly are not able to do this yet and your settings might just hold the answer?  Remember too that our heart condition can change, perhaps even the cause for your complete block may have resolved?  A change in our heart condition or another health condition may then require adjustments to our pacemaker settings, to our lifestyle or to any medication we might be taking.  Electrical disturbances change all the time and our settings sometimes have to be adjusted to keep up.  We usually come home with "factory settings".  Now you need to ask for your settings to be fine tuned to suit you individually.

Yes 3 months is still within the healing period, (the duration will be different for each one of us) when your heart is still settling down and getting used to being paced.  However, in my opinion, it is not too early to start looking at your settings, to see how these could be better optimised to suit your lifestyle.  Good luck Valiant

Gratefully, I've Had Some Success

by DoingMyBest - 2023-11-27 10:19:47

My personal experience will vary from yours. I'm a 68 y.o. male in the USA. I have an Abbott/St Jude pacemaker with Rate Response enabled. I received it about 95 days ago. At the time, I was able to request a higher Maximum Tracking Rate (MTR) setting of 150 because of some running I was doing and intended to continue.

I did 6 weeks of cardiac rehab, during which time I needed an adjustment of the PVARP setting to resolve Pacemaker Mediated Tachycardia (PMT). I also got them to enable Rest Rate at 50 to alleviate excessive pacing at rest. At the rehab I was jogging intervals on the treadmill. Other days of the week I started interval jogging on my own 40 to 60 minutes at a time, including 5ks. I found I could only sustain the jogging for a couple minutes at a time due to maxing out my heart rate, but not due to breath or discomfort. I simply wasn't willing to push myself past ~155 BPM.

Last week I started back at the gym with strength training. I comfortably ended the week pushing/pulling/lifting 70% of the weight I was doing 3 months ago prior to my implant. I expect to do 80-85% this week.

So far as I know, my SA node works well (except for bradycardia when sleeping), so I'm not dependent on the Rate Response feature for exercise. It dynamically adjusts some of the delays as the heart rate accelerates, but otherwise, I think my body controls my basic rate. If you have Chronotropic Incompetence (SA node unable to modulate the right rate), then things can go much differently. Many people here have struggled to get the right pacemaker settings adjustments needed to be able to exercise comfortably. But they seem mostly successful in the end.

I hope my experience provides a little hope. Good luck. I hope you're back to full strength soon.

Getting Information

by ANDREW75 - 2023-11-27 18:03:47

Hi Valiant,

I am originally from the UK and now living in the States, I profoundly sympathize in your situation with lack of information. The number you gave looks more like a Serial Number than a typical Biotronik’s Model type. I have a Boitronik’s Model Endora 8 DR-T.

You should have been given a Patient I/D Card which is perhaps needed at for Airport security clearance or future MRI’s. You should have also received a handy users manual, that I found really informative.

I was assigned a temporary card and now have received my permanent card. This card also has the model numbers of my two leads. Pondering why the two leads are important I discovered they often leave them in when renewing the pacemaker. Further to this the leads do not flap around in your heart, but get covered with scar tissue and become embodied permanently. So it is possible at your next pacemaker the leads will stay in place, you need that I/D card with the pacemaker and lead information for this also.    

Gemita, also in UK seems to be getting better treatment than you, I agree with her advice in your thread. The pacemaker settings are a collaborative decision between you and your cardio team, the NHS staff should also give you the PDF file of your latest pacemaker readout. Consider it “your’ prescription. Take a USB drive with you and politely ask for it.

There is a section in this pdf file on the CLS settings that you may or may not have turned on. You might not understand the jargon now, but that will change.

The NHS situation will hopefully improve, it’s amazing they have gone from being COVID heroes to understaffed and underpaid.

Andrew

Pacemakers, Settings & Conditions

by Penguin - 2023-11-27 18:05:56

There's a fair amount to get your head around with Rate Response settings on pacemakers, as mentioned by DoingMyBest - if you need them.  Your Rate Response setting is Closed Loop Stimulation - which is unique in pacing. I am sure it was explained to you prior to implant if your EP expected that you would need it?

I understand that Biotronik devices really need to be fine tuned. Someone on here said that Biotronik devices have to 'learn' your heart.  Not sure what that means exactly or whether it is true, but it suggests to me that results from changes made to settings which affect exercise may not be instantaneous. 

You may need to befriend your pacing techs a bit and ask if they can find some time to help you out with settings for exercise.  It used to be a lot easier to get time with techs, but yes, the NHS are stretched right now.  I agree with Andrew that staff were Covid heroes, although I think it's fair to say that they've been underpaid and understaffed for a long time - prior to Covid!  

Re: the memory stick. There is another member here who uses this approach with his NHS clinic.  I'm not so sure whether or not the NHS allow it due to the risk of introducing a virus / malware etc.  As far as I know, they don't even accept files via email.  You can request your interrogation.  Different Trusts have different policies and sometimes this differs by patient too!  However, you are entitled to your pacing interrogation information and yes, you will learn to interpret the jargon.

I hope it goes well for you. 

 

 

Re: Getting back to fitness

by Valiant - 2023-11-28 20:16:10

Hi everyone, thanks for the info and reassurance!

Andrew75, the certificate the NHS Trust gave me does not, so far as I can see, have the Biotronik model number on it.   If you permit it I can send it to you so you can compare with yours, but I'm fairly confident I am correct.   As it happens, I do have an appointment to go in next month and disucss with the techician - not the cardiologist, sadly - the pros and cons of CLS, which is not currently enabled, so I will ask then.

 

CLS enabled

by Valiant - 2023-12-05 19:39:18

Prompted by Penguin, I did contact Biotronik UK, and to my surprise and pleasure the Technical DIrector called me up to discuss the pacemaker's features.  Based upon what I told him, he suggested that I give Closed Loop Simulation (CLS) a try.

As it happens I had a review booked in today, and the technician at my NHS trust enabled it, suggesting that unless I had issues I come back in a few months, whereupon they will review and maybe also consider "RR" (about which I have yet to read up on).

She also told me that my heart beat was using the pacemaker "3% on the atrium and 57% on the ventricle".  I asked "3% of what?" and she was a bit vague, so I'm not sure what to make of that piece of information!

Anyway, just an update.  Doesn't feel any different so far, but I've had no chance to exercise yet.

Thanks

V

PS Also got the model of my device, which is a Biotronik enitra 8 dr. 

Getting back to fitness

by Johnxyz - 2023-12-12 21:24:58

I also recieved a pacemaker due to 3rd  (complete) degree heart block.

I was very active and have been all my life. In spite of that it took me 6 months of very slow hard work to build back to my normal fitness level.

If you want it bad enough and are willing to work hard even through disappointments and setbacks I think you will recover your fitness level and may find the pacemaker is a great help in recovering.

getting back to fitness

by softball35 - 2023-12-15 22:25:35

The 3% and 57% mean that 3 percent and 57 percent of your heartbeats rely on the pacemaker.  You need to discuss with your doctor.

Adaptive Rate Response

by El Gordo - 2023-12-17 00:04:24

I have had a Sorin Reply DR pm for 5 years and it gave me my life back.

I started exercising a couple of years ago and took up fencing last January. The warmups are brutal, and occasionally I found myself panting fiercely (pulse ~130) for a couple of minutes towards the end of the warmups. No real discomfort, I just couldn't stop panting. It was weird, almost like I was watching myself because I felt no distress.

Anyway, I asked my cardiologist if they could raise the upper limit on my pm to 140 or 150 (it was 130) thinking it might help. He said do it, so I went to the pm clinic and talked to the nurse who does the tweaking and he asked me why I wanted the limit raised. I told him and he said he would raise it, but that he thought that turning the adaptive rate response "on" would be the solution. I asked him to do both and I haven't had a similar incident since. My pulse has climbed to 145, but the prolonged air hunger is gone.

 

CLS enabled - experience so far

by Valiant - 2024-01-17 18:22:40

An update:

I did contact Biotronik UK and was pleasantly surprised when the Tech Director called me back.  I discussed my symptoms and he recommended having CLS enabled, which I had done about a month ago.

I do believe that this has improved my running performance, although I note that my heart rate starts of well (around 135), but tails off after about 15 mins so even when I am panting away trying to finish the 5km it refuses to rise above 110.

No idea if this is just a result of general lack of fitness and, being in the UK, there's zero chance of being able to discuss it with anyone.

The Biotronik guy did also say I might later try "Rate Reponse".  I need to research this.

V

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