Exercise limits

At a guess your CRT-P needs to be adjusted or tuned for you

by crustyg - 2021-12-10 09:40:22

Do you know *anything* about your device settings are?  MaxHR, whether you need Rate Response and if so, whether it's enabled on your device?

From your comments, my guess is that you may be close to Factory Default.  Which is unlikely to be suitable for you at your young age (==joke, we're nearly the same age).

If your device won't pace your ventricles to a sensible rate (which would deliver good cardiac output =>oxygenated blood to your exercising muscles) then you'll struggle to make much progress in terms of improved fitness.  Feeling aches for two days after an exercise session sounds a lot like the DOMS (delayed onset muscle stiffness) which are worst at 48hr.  It's an inflammatory reaction to pushing muscles into anaerobic activity for a significant period (caused by lack of oxygenated blood).

Have you tried contacting your EP-doc's Secretary? There's a good chance that you can get some information over the 'phone or by email.

Thanks for commenting, crustyg

by IanMK13 - 2021-12-11 07:22:14

After my initial diagnosis in the NHS of DCM and Heart Failure in 2017, further investigation and treatment was done privately by top consultants in London and covered by insurance.  I've now had to return to the NHS for routine monitoring (in a community cardiology unit) so I expect that it will be a challenge to find anyone that I can discuss this with. 

I know that my PM is rate-responsive as I'm 100% paced and my HR varies.  As you say, though, it may be configured to a generic setting which has been deemed to be working adequately ("if it ain't broke, why fix it"). My base HR is set at 50bpm, which was my escape rhthym when the PM was fitted. I have a pulse oximeter which indicates good oxygen levels when exercising (I should really check my BP at the same time, too).

I have previously expressed an interest in coming off any medications where possible but was advised that this could result in my condition deteriorating again.  Because of my original HF it could be that exercising beyond my present level is unwise and it would be easy for someone to tell me this without giving any thought to my individual situation. I would probably need an instrumented stress test, but since I don't have a history of being athletic (and becuse of my age) I doubt that I would be able to get such attention from the NHS.

Pacemaker settings

by Gemita - 2021-12-11 08:19:18

Hello Ian,

I have been reading your history with interest.  I see you have had an AV Node ablation, so you will still be having arrhythmias in the atria although these will now be prevented from reaching the ventricles.  

I don’t think you should stop pushing for better treatment because you are back with the NHS, or because you don’t have a history of being an athlete or because of your age.   By law they are required to give you a copy of your pacemaker data if you request this under the Data Protection Act 2018 or Access to Health Records Act 1990.  I usually request a summary sheet of my most essential settings following any pacemaker check.  Because of Covid, requests may be delayed, but they have to let you have them within a reasonable time frame.  Alternatively as crustyg says, a call to your pacemaker clinic or EP/Cardiologist may enable you to get a few pacemaker settings of interest.  

I find my pacemaker clinic in London (Guy’s & St. Thomas’ Hospital) are always helpful.  If your Community Cardiology unit is inadequate for your care needs or lifestyle, I would respectfully ask for your pacing records to be transferred say to a main hospital where the facilities will be better.  It will be well worth travelling a short distance to get the right care.  Both my records and my husband’s pacemaker records have been transferred to main London Hospitals from our local hospital.  You may need your GP to refer you or ask your current unit if they can do so if your needs are not being met.  

As far as treadmill testing and getting your settings adjusted to suit you personally, I would present any future pacemaker technician/EP/Cardiologist with a statement like you have written to us here, asking how you might improve your symptoms by having your pacemaker adjusted.  Keep adding to your statement as you discover any new symptoms or restrictions with exercise so that any technician will be able to identify the problem quickly for you.  You could also keep a diary of symptoms, with date and time and the specific activity you were carrying out at the time.  The more evidence you can gather the better.  Good luck

AV ablatoin and exercise

by AgentX86 - 2021-12-11 15:53:59

I was/am in a very similar situation.  I had an AV ablation in Feb 2018 (when I was 66 ;-0 ). First, a FitBit is a terrible heart rate monitor, BTDT. Always palpate to get the real number.  Any rate monitor, short of an EKG (and even then) is going to lie, particularly if there is any sort of arrhythmia going on.  Many don't like paced people, either.

One of the tools device techs use to evaluate your settings is a histogram of heart rate.  If it's pushing the max rate for a significant percentage of time, he may make a note that it could be increased.  Your EP will take that into consideration.  My device tech noted that my histogram was tri-modal, 50 (night), 80 (day), and 120bpm (walking) with almost nothing between.

I also walk a lot, though around the neighborhood, and not a treadmill, though I used to.  I prefer audio books over  NefFlicks. ;-) I walk at about 3.3mph for 3hr+change before breakfast, weather and schedule permitting. My heart rate never gets above 120 and I think that's intentional.

My max rate is set to 130bpm, I think because I don't have the "atrial kick", rather the opposite, to completely fill the ventricles at a higher rate. My lower rate is set to 50bpm night and 80bpm day.  I was having PVCs during the day so my EP raised the lower rate from 70 to 80 and it seems to have done the trick.

Sound familliar?

There still may be some settings changes that need to be made, particularly in the rate-response area.  I had mine set to a very fast attack to make stairs somewhat easier.  It still could be better.  It sometimes gets excited on bumpy roads but it's a small price to pay.

The bottom line is that you may have to adapt to your pacemaker rather than the other way around.  A larger volume pumped will offset a higher rate. But, as always, buttonhole your EP.  Get as much as you can sweet-talk him into.  Most will push it a little to improve your life a little. A little at a time may work for you.  Work with your EP.