Pacemaker recipients: Looking for support from others

Hi All - I’ll try to make this short. Had mild case of covid in Feb. 2023, treated w/ Paxlovid. Previously an active, healthy 78 year old female. Shortly after, started having shortness of breath on exertion and heart “feeling funny”. A couple of EKGs and Holter monitoring were inconclusive. Finally in May, I went to ER and was diagnosed with complete heart block and had a Medtronic wireless pacemaker implanted. Unfortunately, it did not work for me and a month ago I had a dual chamber pacer implanted. It triggered atrial fib and subsequent congestive heart failure. I am now taking Eliquis, Lasix and Amiodarone. I am still short of breath on exertion and tire easily. Anyone else have a similar experience? I’ve been on these meds for a couple of weeks and I’m afraid this is as good as I’m going to get. Thank you for listening.

I see Collen is quite active as she is also director on prostrate cancer support.

Have had a ICD/Pacemaker since 2006. I was fortunate enough to have the best electrophysiologist in the U.S. Dr. Kusumoto at Mayo Clinic Jacksonville. He is the president of the Electrophysiologist Group, written many books, gives lectures, seminars, and is known by so many other electropysiologist.

I would like others to hear what I heard that really help me deal with having a foreign body in my chest which helped lesson anxiety over having a ICD/Pacemaker. I was told that I had now my own EMT inside my body monitoring me 24 hours a day and ready to shock me back into rhythm. And did it. I would not be here many many times since first implant and I am on my 3rd ICD/pacemaker.

The pacemaker side is set to 70 to help reduce PVCs. Also I take medications that reduced my heart rate and got down into 40s at one time.

The Pace Clinic at Mayo Jacksonville is outstanding and it's director is Dr. Kusumoto. I have device checked at home every 3 months and once a year in office. The techs can be contacted at any time for advise.

It takes some time to get use to it both physically and mentally. Dr. Kusumoto advised me it would take about a year to get use to is both physically and mentally. I did have some issues and everything was done to change programming to make the device worked the best it could. I was recently put on Mexiletine to help with the hundreds of thousands of PVCs I get. It has helped. Dr. Kusumoto wanted to try this before another ablation.

I have heart failure but virus caused. The right side is normal it is my left that has a low ejection value. Do not have any exercise restrictions other than at age 76 don't over do it. I actually do Sprint Triathlons and exercise every day.

I have been through everything with ICD/Pacemaker since I have had one for over 17 years. Be glad to help with any questions, comments, experiences. I sure wish I had known this group was here when I first got mine as could have asked hundreds of questions.

My implant is 7 weeks today. Set at 60/130. My history is Left Bundle Branch Block, 18 years ago, Bradycardia, AFIB and an ablation 3.5 years ago. Diagnosed with Chronotropic Incompetence in early Aug with pacemaker implant on 8/31 For me, when HR gets to about 110 I start sucking for air and at 120 I really stress. I was and will return to my prior very active life using the 220 minus age x’s 85% for HR ceiling. I wear a Fitbit and monitor my HR with any exertion. It is the new normal.

I've been an active walker, walking 4 miles a day 6 days a week. I turned 87 in June and everyone (until recent) have never beleived me when I tell him my age! In 2019 I had sciatic? nerve problems and was unable to walk without pain for about 5 months. I've used an anti-gravity machine since my early 30's but never had a back problem even tho' doctors don't recommend anyone using them because of high blood pressure problems that might ensue. Nevertheless, I bought a new one at 83 and within 5 days no more sciatic problems. When I returned to walking I had minor heart discomfort. Upon testing one of my heart arteries was becoming clogged up and required a stent. I agreed to being a part of a study that took patients off of blood thinners after 6 months (I didn't know any better). Result was the stent became clogged after only 4 years - which was this year. Discomfort again resulted in the original stent being pushed back with another on top of it, but this time the hospital failed to prescribe a blood thinner along with other meds. Result was within 4 days I had a heart attack as the stent had immediately clogged. Again there was another stent put on top of the other 2. I was diagnosed years ago with a skipped heart beat and was told it wasn't unusual and it needed not be treated. My cardiologist this time recommended I needed a pacemaker which was installed. Now I had to deal with lightheadedness, tiredness and unsteady walking. A month and a half after dealing with this, while standing in the bathroom, fireworks in my head caused me to fall to the floor and crack my femur which required a pin placement. Following a walker and cane I am now able to walk gingerly without either after a little over 3 months. Following physical therapy with the help of my wife, I do exercises for a half hour every day. Upon telling my story, people have recommended I sue the hospital that did not prescribe the blood thinner. I maintain that installing the pacemaker was a big mistake and has done more harm than good!!!!!

Scheduled for insertion but doctor said I didn,t need it yet. Suggested I get a Kardia device and send him regular emails of results.
Still no symptoms and no pacemaker. I,m 80 .
Mllgroom

I got a pacemaker 3 months ago . I think it’s a great idea a support group for pacemakers . I love mine . It was such a change in my life . And people need to know how others feel and how to they adapt !!!yes!!!

Had an ICD/Pacemaker since 2006. On my 3rd one. If I did not have it would not be here today. Had several shocks over the 17 years. My EP and Pace Clinic are still adjust settings to prevent the causes of the shocks. Never had a shock during exercise only at rest.

I was told by my EP that a ICD/Pacemaker is like having your own EMT in your chest ready to respond. That is correct. My pacemaker is set for 70 bpm. My resting pulse is low 50s but I get a lot more PVCs at that rate so we raised to 60 then to 70 to find a rate that reduced PVCs.

For those getting them or just got them I was told about a year and it will become natural to have it. When you first get one you are going to feel the pacemaker in your chest as is a foreign object. After time the body will encapsulate the pacemaker and the discomfort and feelings are greatly reduced. I would watch lifting your hands over your head on the side of pacemaker as in mine it will move and cause discomfort.

Also do you play tennis, fish, anything that you move your arms in a hard jerking motion. This can cause problem with wires being pulled. I mentioned this as my original wire to LV was pulled out during tennis. I stopped playing tennis and started doing Sprint Triathlons. Some say what about swimming. If you do freestyle correctly the strokes you make are very controlled and smooth.

It will take some time to adjust to having one. I have had one for 17 years and unless doing certain things I do not even know it is there.

I did not like the exercise mode on my pacemaker and had them turn it off. I think was adding to issues with PVCs. I exercise every day 1-3 hours at moderate level and do sprint triathlons. I do them at moderate level. I do not use my heart beat as an indicator of my exercise level as medications I take lower my pulse rate. I use exertion of breathing. I know when I move from areobic to annerobic based on breathing exertion.

I too started off way back in 2000 with a left bundle branch block that evolved into heart failure. But right side of heart is normal and I was told by my heart failiure doctor that my body compensated very good with the heart failure probably because of a I was an avid exerciser all my life.

Just adding my $0.02 …
Going on 7 months since my pacemaker/ICD was installed. It doesn’t bother me at all and has made a significant improvement in my PVC burden (was 15% and very noticeable, now 2% and I barely notice them). The other benefit is that my EP said I could stop taking blood thinner.

So, am I to understand that a pacemaker has an exercise mode? What is the function of this?