Pacemaker & ICDs: Introduce Yourself & Meet Others

@durytegirl I was so worried that my ICD would shock me that it affected my quality of life for the first 4 years. What I worried most about was receiving a shock while I was driving on the interstate. I would hate to hurt or kill someone else in a wreck. Also had a fear of exercise, even walking, and setting off a shock. I got over my fears with the help of my local Womenheart support group. Joining them was truly a life changer.

@mauricepower That is something new - the splinter effect. I tried looking it up and all I seem to find is a reference to a book by Andrew Ludington. I am sorry you read that you are experiencing discomfort with your pacemaker, once my incision healed in about 4-6 weeks, I hardly noticed it was there. How does the discomfort manifest itself?

@deniseheart Thank you so much for sharing your experience with your local Womenheart support group! I was not aware of this group and will investigate further. Yes, ((HUG)) fear of "doing anything" at first is quite life limiting and I am glad you have moved along on the journey to live your life. How did you get over your fears? Were there certain tasks you did with others? Have you ever had a shock (I have not)? For @durytegirl I wonder if there is a Menheart support group for her husband.

@walkinggirl
I think I read about the splinter effect in a previous email on this site.
When I lie or sit in certain positions I become aware of it. Certain other positions, such as sitting upright, are fine. It’s not painful just very annoying.

@walkinggirl It has been 8 years now with my ICD and not one shock. (knock on wood). I got over my fears by sharing them with other women in the Womenheart support group. I just needed to talk about them and listen to how others dealt with the same. I believe The American Heart Association has men and co-ed support groups. Contact them for information in your area.

@deniseheart Thank you, again for bringing awareness of the Womenheart, a 501 (c)(3} organization to all who read your posting. It seems to be an online place for women who have experienced heart attacks and and has created a wonderful opportunity to connect and discuss and help each other. ICDs certainly play an important role for many of us, in my case to control arrhythmia after a septal myectomy. Anytime we experience a health crisis we are placed in a scary and unknown place without a road map. Are there groups that meet in person, perhaps to go for walks and have a heart-healthy lunch afterwards?

Hi, I'm Neal, aka, SEPilot. A relative newbie to the world of ICD wearers as a result of a VT episode with loss of consciousness. So are my ICD has not been a shocking experience, but I can sense the pacing the device provides. Throwing a lot of PVCs which are uncomfortable, but cardiology seems relatively uninterested. Also have a 4.4 AATA as a sequel to the aortic valve job. Not much cardio interest in that either. My cardiologist gives me the impression that since I have an ICD now, there isn't much else to be done for me. It is like, well you've reached the summit. Enjoy the view.

@walkinggirl please contact your local American Heart Association office. They may have a list of heart healthy group activities available. Note: Womenheart is a support group for women who had or have heart related issues, including high cholesterol, high blood pressure, rhythm issues, open heart or angiogram procedures and etc.

@deniseheart It's so nice of you to recommend the AHA, others may need that information. I can write/talk the list of heart-healthy activities - I walk 4 miles a day in 1.25 hours, often with my walking club, work out at the gym 3-4 times a week, bicycle - and more - I am a very active person at almost age 80. All of my heart related issues are monitored by my doctors, and all say I am doing extremely well. May I add that people can look at sites such as Meetup where they can find others who walk, bike, paddle and more. Use your browser: Meetup (and name of city and state).

Hi I have had a pacemaker since 2022 see clinic once a year .have monitor at home .I been dealing with having it on my own since .2022 noone to talk to about it or diet or how much exercise to do . I hope joining this group I feel I belong