Pacemaker & ICDs: Introduce Yourself & Meet Others

Posted by Justin McClanahan, Moderator @JustinMcClanahan, Mar 12 1:59pm

Welcome to the Pacemaker & ICDs Support Group on Mayo Clinic Connect.

If you or someone you care about has had a pacemaker or an implantable cardio device (ICD), this is a great place to talk with others with similar experiences. Here, you will learn from one-another and share stories about surgery, recovery, lifestyle changes, successes, setbacks and what strategies helped other members on their journey.

Take these steps to participate in the group:

Follow the group.
Browse topics.
Use the group search to find relevant topics to your questions.
Introduce yourself.

Pull up a chair and chat. Why not start by introducing yourself? What type of device do you have? What tip would you share with others?

Interested in more discussions like this? Go to the Pacemaker & ICDs Support Group.

jc76 | @jc76 | Apr 11 5:32am

In reply to @joypalmer1 "Hi. I had an emergency pacemaker inserted three months ago. I was a relatively healthy and..." + (show)

@joypalmer1
I have had a ICD/Pacemaker since 2006 and on my third device.

A question: Did you get pacemaker only or ICD also?

My heart rate (HR) would be in 30s also because of medications. I have it paced to 70 BPM to help with PVCs. My EP found that 70 BPM was best rate for me to lesson PVCs and for my exercise routine.

I was told it would take about 1 year for me to get used to having the pacemaker in my chest. I have mine under my chest muscle as I did not have enough skin to just put under skin. It was also put under my chest muscle because I was so physically active.

Look at the bump under your chest as having your own EMS in your body. The device is there to protect you and keep your heart beating. So try to see as a lifesaver. The discomfort will go away. What body does per my EP is it will ecapsalate the device eventually as see as a foreing object and the discomfor will subside.

I mentioned if you have just a pacemaker or a ICD also. If you also have a ICD I can post some tips on it.

joypalmer1 | @joypalmer1 | Apr 12 3:36pm

In reply to @jc76 "@joypalmer1 I have had a ICD/Pacemaker since 2006 and on my third device. A question: Did..." + (show)

Thank you for your advice. I appreciate it. So hopefully at one year I will be more adjusted to having a pacemaker. I do not have an ICD.

jc76 | @jc76 | Apr 12 4:43pm

In reply to @joypalmer1 "Thank you for your advice. I appreciate it. So hopefully at one year I will be..." + (show)

@joypalmer1
My Mayo EP who is excellent and have been seeing him for 20 years now said it just takes time to get used to it. As I mentioned he told me the body will eventually encapsulate it and that helps with any irritation around it to tissues and skin.

Over the 20 years I have had a ICD/Pacemaker the Pace Clinic has adjusted my Pacemaker many many times. They do that based on your feedback and checks of your device. So, make sure you are informative about how you feel, and any side effects.

midniteangelcloudjum | @midniteangelcloudjum | Apr 14 4:37pm

In reply to @jc76 "@midniteangelcloudjum Whomever put in your ICD should answer your question. If you had it put in..." + (show)

Yes but my appt with my Cardiologist isn't till May 9th, my birthday by the way..lol. I researched it and it's so conflicting..some say yes and some say no..Whoa is me.

jc76 | @jc76 | Apr 14 5:21pm

In reply to @midniteangelcloudjum "Yes but my appt with my Cardiologist isn't till May 9th, my birthday by the way..lol...." + (show)

So you are a taurus? My birthday is May 11th. I was born on mothers day. The 11th doesn't always fall on mothers day but it did the year I was born.

Hope your appt. with cardiologist gets you answers to your questions and you enjoy your birthday as well.

midniteangelcloudjum | @midniteangelcloudjum | Apr 14 8:07pm

In reply to @jc76 "So you are a taurus? My birthday is May 11th. I was born on mothers day...." + (show)

LOL Yes i am a Taurus. My beloved Aunt's birthday was 5/11 too and my father-in-law was 5/10. Yes my birthday falls on Mother's day often and then i get double the gifts..lol.

barn67 | @barn67 | Apr 14 8:52pm

Hi every one my name is Barney
I have ICD/Pacemaker implanted 2016 for cardiac techna heart rate was as high 204 bpm.
All was good with medication till June 2024. While sleeping was was shocked by device wife took me to hospital while in ER was shocked 6 more times by device. ER got me under control. Go to find out I Now have AFib. Two days later went in for Cardiac Ablation. All the feelings I am having now is this common? Thought out the day I have like a pounding feeling good heart rate good blood pressure and high heart rate 155 bpm these have been very short lived. My ICD/Pacemaker does not register these events
Barney

deniseheart | @deniseheart | 6 days ago

In reply to @joypalmer1 "Thank you for your advice. I appreciate it. So hopefully at one year I will be..." + (show)

You are fortunate to have a pacemaker and not an ICD. You won't have to deal with the psychological torment and worry about a machine giving you a shock without warning sending you off the road if you are driving or passed out when you are home alone. ICDs need improvement. (I was responding to someone here who has a pacemaker only.)

barn67 | @barn67 | 6 days ago

In reply to @jc76 "I am really glad the Director decided to start a specific group for this. Millions of..." + (show)

@jc76

I am really glad the Director decided to start a specific group for this. Millions of people now have ICDs, and Pacemakers or both like I have.

I have had a ICD/Pacemaker since 2006. I am on my 3rd ICD/Pacemaker. Mine were implanted at Mayo Jacksonville where I have been a patient theres since 2006. I have gone through a lot with mine over the years. I have had probably a dozen shocks in all these years. Everytime I do my EP team looks at the cause and what to do to prevent the need the ICD/Pacemaker to shock me again.

In addition to my ICD/Pacemaker I am on a lot of medications that my EP and heart failure doctor have me on in addition to another medication my pyschiatric medication specialist has me on. I mentioned the latter medication because taking them was a result of being shocked 5 times in a 24 hour period. This tramautic event brought back my Vietnam service, deadly force as a police officer and I got PTSD with anxiety/panic disorder.

My PTSD anxiety/panic disorder is under control and only slighty affects my life style. I have a lot of years now with a ICD/Pacemaker experience and experience with the surgeries, pace clinic, home monitoring, ICD/Pacemaker under skin verus muscle implantations, things that can affect your ICD/Pacemaker and hopefully lesson anxiety over getting one and living with one. All these come from almost 20 years now being treated at Mayo Jacksonville.

I think one of the most important comments to me about having a ICD/Pacemaker that changed my feelings on having one was: "A ICD/Pacemaker is like having your own EMS in your body waiting to help." It is a great medical device that has saved millions of lives. My pacemaker has also stopped my EF from dropping any further and corrected low pulse rate.

My need for a ICD/Pacemakr came from HF and low EF. It was getting lower and lower and once reached 30 medical advice was to get a ICD. I have cardiomyopathy (virus got into heart) which caused electrical issues. I have a Boston Scientific device.

Jump to this post

I have most of the issues you have also had my ICD/Pacemaker implanted 2016. Going to see my EP doctor tomorrow morning. Question I have is that about the last two weeks I have my heart rate spike 120-166 very short time device does not recognize spike do you have same issue? My device is Boston Scientific with one lead going to bottom chamber.
Is there any way we can have a phone conversation?

midniteangelcloudjum | @midniteangelcloudjum | 5 days ago

In reply to @joypalmer1 "Hi. I had an emergency pacemaker inserted three months ago. I was a relatively healthy and..." + (show)

I am a 77 yr old woman. I went for yrly check ups and scans and xrays and blood. All was perfect always. The worse i had was high BP and take meds. I also have IBS. That's it and i have always been thin. On 3/23/25 my husband and i were watching TV and all of a sudden i got real dizzy and had a funny feeling in my chest, both arms and my jaw and i passed out. My husband was frantic as i had no pulse so he did CPR and got me back and then called 911. In the hosp i had another attack and they paddled me. I have no recollection of any of it. They transferred me to a Cardio hosp near by. I have never had so many IVs in my life and a ton of blood tests and a painful Catheraztion thru my wrist. Everything was good but the beats of my heart were off so i had to have an ICD implanted. I was in complete shock. Within a matter of seconds my whole world has changed. I feel like a really old woman.

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