New To PM And Have Questions

Hello Again

by athena123 - 2023-09-21 22:13:22

Hi Texas Heart, so you've had you pacemaker implanted recently if i remember and maybe you think the cardiologist might have rushed it. Your case was similar to mine because i had my pacemaker due to sinus pauses that was caused by sleep apnea that went untreated for many years. I first had the afib before they detected i had sinus pauses. I too questioned would a sleep study been more effecient then having this object inside me. I think about it all the time texas heart. I was angry for a while but know its been over 4 years and ive been through a few EPS who questioned the validity of my pacemaker. One wants to take it out another says leave in because i still have a case of afib that im treating with medicine. looking at yiour percentages, now i am no doctor but your sinus pauses are around two seconds, i can remember one dr saying 2 seconds is nothing which kind of took me back. It looks like your pacing in the ventricles at < 1% which is great, the atruim says your pacing at 44% which might seem high at this point. have you tried to become more active because that would be very beneficial to your atruim. Also, you have a cpap which is great but unfortunately i didnt qualify when i went for a sleep study. I would change up my eating habits become more active and in 6 months see where your numbers stand because that would give your cardiologist< make sure you see an EP a good indicator on how well your own natural heart is working because thats what you treally want. i was a little overweight and my sleeping habits were not great, but i switched my life around and you never know you might only need the pacemaker temporarily. god bless 

Useful Reply

by Penguin - 2023-09-22 05:14:50

Hi Texasheart, 

The reply above from athena is a good one IMHO and from someone who understands the CPAP implications too. I'll try to answer the question marks that are not CPAP related and add some links for you re: Sinus Node Disease, Sleep Apnoea and heart rhythm  : 

I can feel it against my skin and the pressure at the site. When does that feeling begin to subside? 

You will always feel it under your skin. Currently you may be swollen, bruised and very tender - that will die down as you heal and the pressure around it should reduce. Ice packs can help, but we all heal at different rates. Sometimes you stop noticing it, because you stop thinking about it. That can take time, particularly if you are really upset about it. 

The doctor told me that sinus pauses vary in length and frequency, but they are probably caused by sick sinus syndrome. Does anyone have any info on this that can be dumbed down for me?

https://www.mayoclinic.org/diseases-conditions/sick-sinus-syndrome/symptoms-causes/syc-20377554

This link will have to be copied/pasted into your browser, but it explains the basics (with diagrams) of sinus node disease (SND or SSS - same thing different initials) and how it might affect you / causes. 

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/ask-the-experts/sleep-apnoea-heart-problems

This link explains how sleep apnoea can affect heart rhythm. 

A manufacturer of pacemakers called Microport, make pacemakers which specialise in sleep apnoea monitoring.  I'm not sure how well known they are in the US?  I thought I'd provide a link to their products for you for reference purposes and for discussion with your EP.  Their pacemakers have a 'SAM' algorithm which may be worth looking into, although I'm sure your current device will deal with SND more than adequately. 

https://microport.com/healthcare-professional/cardiac-rhythm-management-home-page/cardiac-rhythm-management/pacemakers

If you follow the link at the bottom of the linked page you can fill out a form to receive a copy of the 'Respire' study which explains (I assume) how Microport pacemakers help patients with sleep apnoea.  The link will also allow you to access other studies re: heart rhythm and sleep apnoea.   

Warning: Studies may be complicated and contain medical jargon! 

https://microport.com/healthcare-professional/cardiac-rhythm-management-home-page/cardiac-rhythm-management/sleep-apnea-monitoring

I'd also remark that pacemaker manufacturers are businesses. They look for increased market share and unique selling points for their devices.  Sleep apnoea monitoring is niche to Microport. It is worth speaking to your EP who may be able to see through any marketing to assess the main benefits of the product and how it will work for you.

I hope you find the information useful. 

Small favour - Could you insert some paragraphs / breaks in your text?  It helps when reading long posts. Thank you! 

thoughts

by Tracey_E - 2023-09-22 10:24:03

The reason they usually do dual chamber is because both leads provide data, and because electrical problems can change over time. It's great that you aren't pacing with the ventricular lead right now, but it still serves a purpose. Single lead pacers aren't nearly as common as they used to be because many ended up eventually with a two lead. 

CPAP may help with the pauses, absolutely. But those dips down into the 30's are doing damage to your body whether you can feel it or not. Organs need oxygen to thrive. At a heart rate of 30, they are getting roughly half of what they need. 

Just because your body is used to a low rate doesn't mean it's good for it. 

Your pacing percentage is definitely going to drop when they lower the minimum rate. But here's something to think about. A heartbeat of 60bpm is 3600 beats per hour, 86,400 beats per day. Even if it drops to 5%, that still means it's kicking in over 4000 times a day. That's significant. 

Electrical problems get worse with age in virtually everyone. When it's time to pace can be a gray area. There is a lot of room between people who clearly don't need it and can simply be watched, and those who desperately need it now. You were in the middle somewhere. Could you have waited longer? Probably. But that doesn't mean there aren't compelling reasons to do it now.

Those dips at night are easy to write off because we don't feel them but they are doing damage. The older we get, the harder it is for the body to cope with that damage. Pauses can, and usually do, become longer over time. If the rate gets too low, or the pause goes on too long, the heart can stop. Obviously you were not at that point, which is the whole point of pacing earlier than later. 

I hope you find peace with your decision. Know that many people find the emotional healing to be a lot harder than the physical. You are not alone in that. It's particularly hard to adapt when you feel the same.

If you do decide to take it out, I would suggest turning it very low first, like 40 min. See how much it is pacing at that point. 60 is a normal heart rate, many get by just fine in the 50's and sometimes 40's. Under 40 is truly harmful. So, before making a final decision, see how often you get under 40. 

Thank You

by texasheart - 2023-09-22 12:15:49

Hi Tracy. Thank you for your thoughts, I let similar thoughts bounce around in my head before consenting to the implant.

I just returned from what I would consider a relatively short walk, and I felt poorly on the entire walk, where before I could power walk for miles and feel great at the end . My thought was to "return to normal." It has been just shy of 3 weeks, but I  do know that if I don't try to return to normal activity, I can't even begin to have a good discussion with the doctor.

My dips, prior to implant, into the 30s was only a brief few minutes before rising again and it wouldn't happen every night. 

The EP convinced me it was right thing to do without any additional test other than the usual...stress test which I passed, ecocardiagram with no problems noted, and a holter monitor over 2 years from the last and my pauses decreased. Oh and thyroid check which came back normal

I  just wanted to do the right thing for my famy, so I took the plunge. 

I'm going to continue to push myself to "return to normal." The pain last night wasn't good and clouds my thoughts, but I must move forward. Thanks again.

testing

by Tracey_E - 2023-09-22 14:27:00

If your thyroid is normal, a holter is really all they need to see. Other tests won't tell them anything new. Most of us with electrical issues have otherwise perfectly normal, healthy hearts, so the other tests just confirm that. A need for a pacer is based 100% on heart rate. 

What is happening when you feel poorly on your walks? It could be that your settings need adjusted. 

Keep in mind that even though it's a minor surgery, it's still a surgery and a stress on the body. It can take longer than we'd like to bounce back. Every once in a while you hear about someone going out for a run two days later, but most of us get tired and nap a lot for a few weeks. 

What you don't know

by Gotrhythm - 2023-09-22 15:02:42

I'm glad to see that you are focusing more on what needs to happen to get the best qualily of life with the pacemaker you have. Good for you.

Again, your condition and the questions that arise for you remind me so much of myself thirteen plus years ago. It was so hard to mesh how I experienced my condition with what they were telling me.

Like you, my heart still had chronotropic competence (it speeded up appropriately with exercise--or even just being "up" phychologically) In my case, the chronotropic competence covered up the bradycardia, which was only discovered by the Holter monitor test. How the two could coexist in the same heart, I didn't then, and still don't, fully understand. 

But the fact that your heart can speed up appropriately, doesn't cancel the hardship that occurs in every cell in your body of during those times your heart goes too slow. Yes, even if the slow down only occurs for a few seconds at a time. It still takes a toll and nothing is working optimally. I certainly wasn't taking that into account as I went over and over the Holter monitor report, looking at 22 seconds at 34 BPM or 4 second pauses. There weren't "that many" of them. (!!)

Why a pacemaker with two leads, when--let's get real--I didn't even want one! Well, that's because the day might come when you need two, as Tracey says. I'd had mine about 7-8 years when my heart started to need help from the ventricle lead, and I'm still paced far, far less in the ventricle.

I'm sorry you're still experiencing pain. That's no fun and does, as you say, cloud your impression of your overall recovery.

Do make sure that you are gently moving and stretching your arm and shoulder through the entire range of motion. It can take a long time for the swelling to go away. I've had two pacemakers implanted now. In both cases, it was only months later that I was able to appreciate how much swelling there actually had been in the area. Gentle movement will encourage circulation and speed healing.

And hard as it is to believe now, that feeling and AWARENESS of this THING in your chest, will go away. I don't know when, but the day will come when you suddenly realize that you haven't thought about it for days--or weeks--or--well...really, you can't remember when's the last time you thought about it.

Keep speaking up for yourself at the doctor's office. The settings you need are based almost intirely on how you feel, and they don't know how you feel unless you tell them. Optimaly settings for people who are comparatively young and healthy are sometimes trickier than older, more sedate people. Keep demanding the best quality of life you can have.

More

by texasheart - 2023-09-22 21:51:14

I appreciate all the replies I've gotten in the past couple of weeks from everyone. Now, after the fact, and after only a follow-up visit I really do begin to question my consent, but let me explain.

So, on the first visit with the Medtronic tech, they quickly agreed to knock down the pacing to 50 bpm, and the doctor offered to go to 45 bpm. They also set some sort of sensing mode so that it barely active and even offered to turn it off. Isn't that odd? Again, the doctor didn't want to implant the PM due to a low heart rate, but because they detected some sinus pauses, and why I consented.

The longest pause was on a test 2 1/2 years ago and were 4 seconds. Yep, I agree that's a concern. The longest pause on the last reading just over 2, and from what I ha e now learned, isn't to be considered an issue because they're too short.

I've already mentioned my sleep apnea, and they didn't think about sending me to a Plumologist for investigation, but put in a PM. The sleep apnea in itself could manifest into my symptoms reported. What I didn't mention in my earlier post is that I also take Atvorstatin Calcium for my cholesterol I've now learned is to be considered when diagnosing SSS. 

One more issue that I also just found out is that the amlodipine I take for my BP has also now been diagnosed to slow the heart and show the patient as having bradycardia recommending a PM, and that it should be considered. It will display signs of  fatigue and shortness of breath.

All these factors I just wish I knew and were discussed with me.  I will be reaching out to my doctor, especially since he offered to remove if my mental QOL is decreased.

Finally, I will also continue to try to improve my strength because something needs to change with the way I feel.

Sleep apnoea and meds

by Penguin - 2023-09-23 08:18:30

I suppose the most important thing to consider is whether or not your treatments are helping you enough to continue with them. 

If CPAP isn't helping enough to keep your heart rate steady, then you perhaps need to consider supplementary help e.g. a pacemaker, losing weight (if applicable) or another sleep apnoea aid. 

If the meds can cause bradycardia / SSS can they be swapped for something else or discontinued or could dietary changes help with cholesterol management? 

Some of this may be down to you to try and change for yourself in consultation with your primary care doctor.  Unfortunately the more meds we take, the more we open ourselves up to interactions and side effects.  The less we take care of ourselves - weight, fitness, diet - the more likely we are to need the meds. I'm not preaching here as I certainly have room for improvement!

I do agree that it would have been wise to discuss alternative treatments before a pacemaker was implanted to see if those changes made any difference.  I'm not sure whether the onus is on you to raise these things or whether it's on your doctor to check. However, you must perhaps ask yourself whether or not you have already tried any of these things - weight loss, meds changes, diet etc - and whether they worked?  Sometimes we find it difficult to persevere or we find ourselves in a position where a pill works better than our efforts. I guess it's important to reflect on whether your commitment to swapping out or stopping meds, dieting / exercising or lifestyle changes was strong enough to effect lasting change.  

Apologies for the tough love.

No Apologies

by texasheart - 2023-09-23 10:33:40

Penguin...no need for apologize for the tough love expressed through directness. It is the conversation I wish I had before consenting. Ignorance on my part is why I'm kicking myself, way more than the doctor for doing it.

Doctors will do things putting everyone in the same textbook box. I also know that with today's medical technology that it can be removed safely, especially this early on. I believe that is exactly why the doctor stated, "If you want me to, I'll remove it." That statement both shocked me, and I  appreciated.

So, the frustrated regret I've vented on here, is something I need to apologize for to everyone.