Surgery on Sept 1 to get pacemaker for 1st time. General Pacemaker questions

Hi!

I am scheduled to get a 2 lead pacemaker on September 1.


I have some questions. I tried to ask them all at the Cardiologist but I keep forgetting half of them.

After my pacemaker is implanted can the cardiologist change my minimum heart beat rate? Or is that permanently set at implantation? I ask because each time I ask what my pulse will be the answer is 50, 60 or 72. ???? I want it set to 60, I think? It has never been 72 my entire life so that seems unnatural to me but I often feel bad when it's near 50 so I am afraid if it's set at 50 it will go down to 50 during the day when I am sitting around and I will still feel bad.

I do understand that I will download my data to the cardiologist every 3 months. Will they be able to adjust the pacemaker based on my data?

When I went to the hospital it was for Afib. I was taking Wellbutrin and Lions Mane which caused the Afib and it was terrible. It cleared up mostly during the 30 days I was wearing the heart monitor. I kept taking them for about a week then stopped and the worst afib went away quickly but it took awhile for my heart to recover.

The cardiologist office does not seem to grasp or believe this. Anyway, I have afib occasionally and all of my dads siblings had it so I know it is a risk but right now my real problem in terms of how I feel is my sluggish heart. Most days I do not have Afib. My fitbit only picks it up 3-4 times a year and I only feel it when I have very much exerted myself earlier in the day.

I asked the cardiologist office to look back at my heart monitor 30 days records and see what my symptoms were for the last week but they did not do so.

Regardless per my fitbit and my own monitoring of my pulse and my history of many things, medicines, incidents of low pulse, etc... I am in total agreement that I need a pacemaker and also per my occasional afib and family history of afib I know that I am at risk of worsening afib.

Here is my delimma. Right now what is making me feel bad is the low pulse. I want to make sure it is sped up enough for me to feel good but not to fast because that is also not good for your heart and my heart was always naturally slow.

My sonogram of my heart and my stress test were good. Besides being out of shape and obese and having problems with my sinus rhythm and occasional afib there does not seem to be anything else wrong with my cardiovascular system.

I am only 58.

The cardiologist just seems so focused on this afib that I don't think I am having anymore. I just need my pulse to be over 48-50 when I am sitting around. I have gotten to where I can tell when it's low without hearing/counting it. I just feel sick.

He keeps talking about a future ablation.

They will monitor my heart after the pacemaker before deciding future action right? I am not opposed to a future ablation, again all of my dads siblings had afib, but i don't think mine is bad yet, it was just bad from the wellbutrin and lions mane and i can't get them to seem to understand this or to check the records (look at the last week of the 30 days of heart monitor wear).

Thank you for reading all this if you have made it this far :-)

Valerie


5 Comments

No worries you’re gonna be ok

by Lavender - 2023-08-08 13:34:59

I too was so used to a low heart rate. When I initially got the pacemaker it was set at 70. Most of us are initially set like this so the signal gets through better until the leads (wires) are more firmly imbedded by the healing heart tissue around them. 

I didn't like it because I felt my heart was racing like I had a pot of coffee. I definitely felt charged up but understood that this was temporary.

At the one week post surgery mark, I had a wound check. Four weeks after that, they turned me back to 60. Most of us are set at 60 but some prefer 70. 

You won't get an ablation without your knowledge and permission IF it's needed down the road. You are in the driver's seat!

The three month download for me is automatically done by my bedside monitor while I sleep. No adjustment can be made remotely. Any adjustments are made at the six month pacemaker interrogations and are done only by the pacemaker tech and only with the cardiologist's ok. 

You will be fine

by Gemita - 2023-08-08 14:13:35

Valerie,

Firstly, no one can push you into having an ablation.  Take your time and make a decision based on your symptoms.  My Atrial Fibrillation (AF) improved with pacing at a steady heart rate of 70 bpm and perhaps it will be the same for you with an increase to 60 bpm.  Yes your lower minimum heart rate can be changed.  It is not permanently set.  Settings can be adjusted to suit the patient when needed.  For example, I could increase my minimum rate to 75 or 80 bpm, or lower it.

I attend clinic if I need a pacemaker adjustment.  They cannot do this remotely.  Yes if you need any changes, based on your data, they will make the necessary changes in clinic and perhaps ease any symptoms with medication as well.

I am sorry to hear about your experience with Wellbutrin and Lions Mane which you say caused the AF.  The problem with AF is that it can start and stop for no apparent reason too, hence your cardiologist’s skepticsm about the actual cause.  Three or four times a year sounds as though your AF is well controlled, although short runs of asymptomatic AF is quite common and it may be happening too.

I am glad you have come to the decision that a pacemaker would be the right decision for you, particularly with the low pulse.  I felt immediately better with a steady, higher heart rate.  Unfortunately AF can occur at a slow, normal or fast heart rate and it can really mess with the rhythm and speed of our hearts which is why your cardiologist is probably focussing on AF.  My AF used to cause sudden surges and falls in both heart rate and blood pressure.  For example my heart rate could plummet to the low 30 bpm during the day and then surge suddenly to over 200 bpm.  No wonder it caused instability.

Yes they will monitor your heart after pacemaker implant before deciding future action.  And let us not forget, you have to give consent for an ablation and if you are not troubled by your AF or your symptoms, you can tell them.  My doctors intended doing an ablation after pacemaker implant, but with improving symptoms I decided an ablation was not needed and I have not regretted this.

Good luck for the 1st September.  I hope the pacemaker will improve your quality of life.

Setting

by Laurette - 2023-08-08 17:29:22

I have had mine for 7 weeks I am 66 and I called today to find out my setting it is at 60. I seem to only pace a few seconds once every other day. My monitor at my bedside takes in all the info. I have a Boston Scientific dual leads. Very relieved I have it. Good luck be grateful for this technology.

Pacemaker settings

by AgentX86 - 2023-08-08 22:37:10

You don't really say much about your condition or why you need a pacemaker.  In many cases, the pacemaker is just a backup, in case the heart forgets to do its thing.  The rate can be set quite low, in this case, because it's not needed much.  Others need support all the time, so the rate is more important.

The rate can be changed by the device technician at any time, at the direction of your doctors.  Mine was set to 80bpm at first, then dropped to 70bpm a month later.  A month after that it was supposed to be set down to 60bpm but I ran into a PVC problem so they set it back to 80bpm.  But, so that I could sleep better, it's set to 50bpm at night.

They can, and do, adjust your settings based on what they find when it's interrogated but the modifications have to be done by the device tech.  He cannot do it remotely. It has to be in-office, for security reasons.

thank you for the replies

by vmarshmellow - 2023-08-12 16:44:11

Thank  you for your replies!

It is good to know the initial pace is not permanent.

I did ask my cardiologist if the pace would be set different for sleep and awake and he said "no"?  Because it sounds like that would actually be a good idea.

Anyway, I am a little worried about trying to sleep with a racing heart. I feel like I trained my heart to beat slow because it would beat fast when I was trying to sleep. Also I had horrible chronic migraine for years and I was always trying to relax to decrease the throbbing.

I am so nervous about the surgery. The only surgeries I've had were ablation, cryosurgery, wisdom teeth removal and a small superficial scar removed from my face. I've never been cut into really. Ugh.

 

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