Pacemaker & ICDs: Introduce Yourself & Meet Others

@scoleo70058
I have a Boston Scientific ICD/Pacemaker. In the 20 years I have had a device I only got a audible alarm once.

I was told to immediately go to cardiology and have it checked as most likely the battery warning. And it was my battery low warning.

If you just had yours put in would not seem battery would be the issue but you know devices can malfunction. Medtronic may have other alarms other than low battery.

I have just agreed to get an ICD so I can be here to care for my wife, who has medical problems. We are both in our 70s. Expect the surgery will be in the next month or so.

What advice do you have for me?

@bri793
If I read right you are getting an ICD and you are a caregiver for you wife.

I am in the same mode of life. My wife had uncontrolled diabetes 1. She also has had stomach bypass surgery due to diabetes attacking her vagus never and her stomach muscle stopped working.

In addition to this had to have eye surgery as diabetes attack her eyes also. She has also have back surgery, and sinus surgeries.

So I became a care giver almost full time. Having an ICD/Pacemaker has kept me alive and able to take care of her.

What I can advise you. My electrophysiologist said to think of my device as my own EMS team waiting to help me if needed. Think of it that it will keep you around to take care of your wife.

Now taking care of your life. Find a hobby or exercise (if doctor approves) and try to de-stress with those activities. I do water aerobics 7 times a week to music and really enjoy it. It refreshes me to be able to take care of my wife and myself also.

Thank you very much for your kind note. Glad to hear an example of someone who is coping well with the sort of situation I find myself in. Is there any kind of Zoom support group for ICD patients?

@bri793 Yes! On the website of the Hypertrophic Cardiomyopathy Association, you can sign up to participate in such a support group. 4hcm.org This website is generally for HCM people, but you may be able to participate. On the website, there is a number you can call if signing up for the zoom meeting is troublesome.

@bri793 Welcome to Mayo Clinic Connect, a forum where you can meet others with similar health issues. It is not a place to get professional medical care.

Besides this discussion group for ICDs and Pacemakers, there is one for Caregivers that you may find helpful. https://connect.mayoclinic.org/group/caregivers/

To learn more and generate questions to ask your doctor, you may like to read https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692

Will you have help for a couple of weeks(?) after acquiring your ICD? There are different kinds and styles if ICDs, mine is in my chest wall between my heart and collarbone. Buddy, my ICD, and I have been an item for about 4 years, I was 76, I miss sleeping on my stomach, it's my only real "complaint. " At airports and other places, I need alternative procedures, the devices you pass through can make an ICD give a shock (to date, I never had a shock).

You will receive discharge instructions after it is installed. Some major items: Reaching and lifting will be limited for a while. Driving will be restricted as well; some find seat belts a problem, may need a small cushion. I slept in a recliner for a couple of weeks. I had no pain.

If you can, do read some other discussion posts about ICDs here on Connect. Here is a link and you can scroll down the many pages of posts to those that may interest you. https://connect.mayoclinic.org/group/pacemaker-icds/

What were you diagnosed with that you agreed to get an ICD? How long had you experienced those symptoms?

@walkinggirl
Hi, Linda, thank you very much for writing with the helpful information. I had a major heart attack in 2005 and have a lot of scar tissue. Then we did some medication changes this year that led to an MRI and discussions with my cardiologist. Yes, I'm going to see about arranging help for a few weeks after the procedure. We don't have a date set yet.
Brian

I received my Medtronic 2 Lead ICD , 8/23, as a result of Chronotropic Incompetence which was diagnosed during a stress EKG. Prior issues included LBBB in 06 and Afib in 2019 with an ablation in 02/20. Currently age 80, on 5mg Amlodipine, 50mg Losartan, 40 mg Atorvastatin. Location is on my upper left side and I will lay for short periods lay on Left side. My major concern currently is my 95% RV pacing which greatly increases the probability of heart remodeling. My EP is at Vanderbilt. Vanderbilt through the patient portal sends me the quarterly Medtronic history. I have started to really study the numbers. I take these numbers to ChatGPT for an explanation that for me is like talking to a person. There apparently isn’t anything that I can do to offset the high RV pacing % except eat better, exercise etc. The EF/ Ejection Fraction will be the determining factor for additional treatment if the EF drops will be CRT. Bottom line, read and study your reports from the manufacturer of your ICD and be a more informed consumer.

@bill0996 Thank you, Bill, for your comments and insights. I'm just getting started on this, it is a little overwhelming! That is great advice to really study all the manufacturer's information! Sending good wishes! Brian