← Return to Pacemaker recipients: Looking for support from others

Discussion
Comment receiving replies
@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

Jump to this post


Replies to "What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect..."

Nope. You put me to shame. I would think by Spring all restrictions currently placed on you would be lifted (pacemaker ones) and would be an excellent time to get back into your routine. Just remember to follow your PCP's orders. With your blood pressure concerns you might have to adjust and plan accordingly. Keep us posted.

Hi Colleen, I have a pacemaker. @ gailfaith

Hi gailfaith here. I had a pacemaker implanted in April of 2016 because I had had two "drop attacks".
Walking along, I am not aware of anything, but within seconds I realize I am falling. The second half of the fall I know exactly what is going on. The first time I suddenly saw the grass coming up at me, and I sustained no injuries. The second time ( 6 months later) I was coming down a flight of stairs at a friend's home. The stairs had a landing close to the bottom and then a left turn with two more steps. I have no idea how far I was down the stairs, when suddenly I realized I was on my back sliding down those last two steps and could see my left hand still holding onto the vertical "rungs" of the banister. Because of my myotonic dystrophy, when lying down, I cannot raise my head straight up, but when I am standing, I have no limitations. They had hard wood floors so when the back of my head hit the floor, I hit it hard. I had a concussion that lasted 3 months. So happens I had attended a seminar just previously on concussions and one thing they said is that some people never get a concussion no matter how hard they hit their head. I thought I was one of those, as I have had many falls when I was a younger where I slipped on ice and hit the back of my head on the concrete sidewalk and never had a concussion. When I was in 8th grade, my class room was in the basement and there were stone steps going down. It was winter and I must have had snow on my shoes and I slipped and the back of my head hit every step on the way down.......no concussion! I guess age made me more susceptible to concussions. I was 80 with that last fall. I've had no drop attacks since they implanted the pacemaker. Occasionally I can feel some tachycardia, but it only lasts a few seconds compared to when I didn't yet have the pacemaker. I've had NO issues with the pacemaker. Healed with no issues. I feel nothing. even when it apparently is regulating my heart rate.

Hi @gailfaith,

I thought you might wish to read this study about a possible link between falls/fractures and pacemakers: https://www.hindawi.com/journals/crp/2012/498102/

Had a pacemaker installed the day after Thanksgiving-Checked 2 times. Seems to be OK but I still am fatigued, tired, huff & puff after 2 steps! So far, the pacemaker has done NO GOOD!!! I've run the gammit from cardio inversion, medication, Etc. Step in pulmonogolist:Got a slew of inhalers , cpap, nebulizer, breathing exercises, nasal inhalers, Etc. So far all have failed-still waiting for a cure since 4/2/16!!!

Hello!
I am so sorry you have been going through so much. I pray that the doctors will find an answer for you.
ronnie

Hello Colleen, I used to contribute on the heart rhythm discussions, particularly about ablations. I had 4 failed ablate thatons and a successful PVA about 5 years ago. I am actually inquiring about a group for a friend of mine. He has recently (6 weeks ago) had a pacemaker inserted for an AV block. I thought that these discussion groups would be good for him but I see that most of the posts are 2,3 or 4 years old. Is there an active group now that discusses pacemaker concerns for AV blockage? Thanks, Martishka

Welcome back, @martishka
There is most definitely an active group on Connect discussing heart rhythm conditions. In fact, there is now an entire group dedicated to the topic here:
- Heart Rhythm Conditions https://connect.mayoclinic.org/group/heart-rhythm-conditions/

This particular discussion "Pacemaker recipients" was started in 2016, but continues to be active today. If you skip to the last page of messages, you'll see posts from this year.

I hope you'll direct your friend to the Heart Rhythm Conditions group. This is a good discussion to start with:
- Heart Rhythm Conditions – Welcome to the group https://connect.mayoclinic.org/discussion/heart-rhythm-conditions-welcome-to-the-group/

I have had a pacemaker for two years. Would be interested in connecting with others!

I got my first pacemaker in 1992 because of complete heart block/bradycardia. I received 3 more in 1997, 2004 and 2010. They were better and better each time and the batteries lasted longer and longer. I never had any real issues other than getting use to having your heart beat only because of a small machine in my chest. I have been 100% paced in the atrium and ventricle for many years now. After a relatively simple history, everything changed in 2018 when I had an episode of ventricular tachycardia and my heart rate shot up to 480 bpm and I was almost unconscious. The ambulance arrived and they worked on me for 45 minutes to get my heart rate down enough to head to hospital. 10 days and many tests later, I had a new machine put in—a CRT-D which has a pulse generator, pacemaker, debrillator, and cardiac resynchronization modality. I have had 3 minor attacks since, but the CRT has 17 modalities that immediately go into effect to try and restore a normal rhythm. So far it has worked 3 times. But I will tell you that I have had what I call PTSD since knowing I could be shocked at anytime or die of cardiac arrest. I am 70 years old now. The CRT comes with a monitor that I placed by my bed. It tracks every beat and the green light turns yellow or red depending on issue and I can talk to someone on call whenever that happens, It notifies my dr too and I go to the heart clinic the next day or ER immediately. They can do an EKG transmission over the phone and I am glad to have this free equipment, though the CRT-D cost $130,000. My advice to you is get a great dr who is a cardiac dr and a top notch electrophysiologist and relax. Pacemakers are wonderful inventions and people like you and me wouldn’t be here without them. I thank God all the time that I live in this day and time. I take Metoprolol, Amiodarone, Eliquis and Lisinopril as well as meds for reflux, type 2 diabetes and peripheral neuropathy. Would love to hear others experience with CRTs. God bless you. Beckie