yearly check up

Yearly checkup

by Persephone - 2021-09-26 20:37:47

I'm glad you had a positive doc visit, Athena, and are choosing to move forward with a positive attitude.  I'm not sure what stats you are referring to, but to take your comment how I perceive it, pacing 25% of the time at night would indicate 2 hours of pacing out of an average of 8 hours of sleep, or more depending what "night" meant - I'm not understanding why this amount of pacing could be considered trivial.  I just have my own limited experience with PMs and no medical background, but I don't fully get the picture.  Again, I'm glad it was an overall positive experience for you.

Positive news

by Gemita - 2021-09-27 10:45:45

Hello Athena,

Thank you for the update.  I am glad your PVCs have calmed down and that you are currently not on night shift.  That must make a tremendous difference to your well being.

Can you remind me Athena what your original diagnosis was prior to getting your pacemaker and what tests you had?  I was somewhat concerned to read that you were told you didn't need your pacemaker.  In my experience doctors don't usually disagree with the decision of another doctor, at least not openly in the presence of a patient.  I must say we have had quite a few members who say much the same and this is a worrying sign.  I had to really struggle to get a pacemaker, to go through a batch of tests and long term monitoring to capture my electrical disturbances.  I even changed to another cardiologist/EP for a second opinion.  Without his help, I probably wouldn't have had such a successful outcome, so it is very important that we trust and feel safe with our doctors.

I am glad you have stopped Flecainide.  It can help with arrhythmias but it can also trigger them (pro arrhythmic effect).  Flecainide triggered my Atrial Flutter for example while I was treating Atrial Fibrillation.  The Metoprolol is a much safer med and hopefully will keep your PVCs quiet.

I note you are pacing mainly at night when your heart rate naturally falls.  I hope the lower rate of 55 bpm will suit you.  At the lower rate you will probably see a reduction in pacing percentages, but as Persephone says, a pacing percentage of 25% is certainly not "trivial" and if pacing helps you to sleep and to feel better, then I would feel reassured.  I do not believe that a small decrease in base rate will significantly prolong battery life though Athena, so if the lower rate setting causes worsening symptoms (more PVCs for instance), I would consider asking for it to be raised again.  

Jumped the gun?

by Gotrhythm - 2021-09-27 16:10:25

More often than you might think, cardiologists have differering opinions about how severe symptoms must be before a pacemaker is needed. Some favor waiting until there is no question that you can't function without one. Others see no reason to wait if you are having symptoms a pacemaker could help.

LIke the others who have responded, I don't think 25% at night is a negligible amount. It's obvious to me that at least 15 minutes out of every hour, your heart rate is falling below the preset minimum. How far it would fall without the pacemaker we don't know. But if your pacemaker is helping you once every 15 minutes, that's enough to prove it's doing something.

When I got my pacemaker I was paced only 34%--mostly at night. And that means, all the rest of the time, 66% my heart was beating on its own. The thing about pacemakers is, you absolutely do not need one--except for the times when you do.

the why

by athena123 - 2021-09-29 18:13:12

At the very begining i started to question the need of a pacemaker like many here may aslo have done. Why at the age of 53 did my heart go into trachycardia while at the gym. Why, would a healthy individual other then have sleep apnea for many years would have the need for a PM. Why did the first cardiologist who installed the pm was an excellent surgeon with terrible bedside manners who only said after runnin a few test tell me my heart at sleep was pausing for 4 secondsand i needed this done withjout actually explaining the root of the cause other then you have sleep apnea. Like many this was an extremely big shock then come to find out why would my new EP tell me that i really didnt need one., To say the least i was confused and still am. Who do i believe., This ep is the medical director at harvard so im thinking he has the appr opriate credentials to diagnos someone. Again, why.? I think to clarify my previous comment the pm only comes on about a little less then 25% of the time when at sleep. The question for me was after many years of sleep how did all this come about. was my heart pausing all these years and i never knew it?  

Heart pausing

by AgentX86 - 2021-09-29 20:38:15

They caught your heart taking a nap for four seconds. What if that were 40, or 400?  Four seconds isn't often a hair-on-fire emergency as long as they're not strung together but these things invariably get worse.  They'd caught mine doing 3 second asystoles for a year or two, then eight.  That was suddenly a hair-on-fire moment. 

Why?  Root cause? Who really knows.  Why at 53 did your heart go into tachycardia?  Why not?  If your heart is damaged it doesn't matter how old you are. There is a strong correlation between sleap apnea and arrhythmias so that's a good enough reason.  At 53, you're not a spring chicken, either.  It's not unheard of for a 35YO to have a heart attack.  53 isn't uncommon at all.

25% of a 24hour day is six hours.  Seems like a lot of time to be without a heart to me. The fact is that the 25% number means nothing. .02% without a pacemaker can be a really bad number and 100% with, can be perfectly normal.

BTW, my thoracic surgeon had a really crappy bedside manner too but I wasn't there looking for a bridge partner. My cardiologist said he was the best.  Good enough.

The only way to tell

by PacedNRunning - 2021-10-02 05:01:15

The only way to tell if you really needed the PM is if your symptoms have improved. It got rid of the symptoms you had before the PM.  Since your set at 60, most people do go below 60 at night so this is quite normal and may tolerate it.  So 25% set at 60 isn't too much pacing. The only way to know is turn it down to say 50 and see how you feel and how much you pace.  If your pacing is then 0% and your symptom free, then he can say maybe they jumped the gun.  My low is set it at 50 and I pace 25-40% last check 39%.  but I'm at 50, When I was at 60, I paced 70%. Big difference. So see how you pace at 55bpm.  You may feel the same, you may pace less, but if your own heart can do the work, let it do the work. 55 is a good safety net even 50 is.  I"m all for less pacing.  So even if at 55bpm you barely pace but feel fine then that's great.  It will be less unnecessary pacing you need. I totally unnecessarily pace but it' s at 50 to keep my settings running smoothly.  My bottom chamber is the one that matters for me.  See how you feel and th good thing is it's always there if things do get worse over the years.  

much welcome

by athena123 - 2021-10-02 15:43:06

thank you everyone for all your wonderful advice. IM so happy i found this site. many blessings