Pacemaker & ICDs: Introduce Yourself & Meet Others

Hi everyone, I’m a newcomer here. I’m scheduled for my first pacemaker soon due to the heart block condition. I’ve always been very active, especially on the golf course, and I’m looking for any advice from fellow golfers on the transition. I'd also love to hear your thoughts on specific device types or settings that have worked well for those with an active swing. Looking forward to learning from your experiences!"

@deniseheart
I’m sorry. I didn’t realize this was a women’s group. I’ll stop posting.

@sepilot Welcome to the ICD group, Neal! I see you are also in the COPD group. Are your cardiologist and pulmonologist working together as a team? The fact that your cardiologist seems "relatively uninterested" in your PVCs and 4.4 AATA is concerning because you are trying to learn as much about your unique situation to live your best life. I just looked up AATA, not familiar with that acronym, but knew that PVC was premature ventricular contraction (not a plastic pipe used in construction, context is important) because I have it, too. I have an ICD named Buddy, that paces, I developed dizziness and giddiness with a couple of syncope after a septal myectomy. May I suggest that you get a second opinion with a cardiologist who will address your concerns? Are you able to be seen at a COE (Center of Excellence) for heart and lung issues? Have you received guidance in what practical behaviors in terms of diet (nutritionist/dietician) and exercise (cardio rehab) you can do to maximize your quality of life?

@bab52 I am so happy to welcome you to the ICD blog! Your pacemaker is as old as mine, named Buddy. What brand is yours? Mine is a Metronic and I have a monitor on my bedroom shelf. My electrophysiologist oversees an in-office check every 6 months and monitors the more the reports. more frequently. Have you read about ICDs on the Mayo Clinic website? Here is the link: https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692. In fact, if you search in your browser "Mayo Clinic ICD" you will see many other articles. We cannot give medical advice on this blog, so would it be possible to speak with your cardiologist/team about your very valid concerns on diet and exercise? Questions for your present care team may include referral to a nutritionist/dietician and cardio rehab. Let us know how your important concerns are addressed, a second opinion is warranted if you are dissatisfied with the care you are receiving. I do not know where you live, if you are near a COE (Center of Excellence), you may wish to become associated with the wonderful care you will receive there.

@walkinggirl
Thanks for your reply Linda. AATA ascending aortic thoracic aneurism. I’m on the doorstep of 83, so intervention is iffy. Surgeons don’t like risking their numbers so they’ll watch and wait to the very last moment of choice and perhaps not then. All of my care is at MassGeneralBrigham. I don’t think pulmonology talks to cardiology regarding my case. Frustrating but that’s just the reality. They are kind of a top medical Mecca which means they get hundreds of critical cases all the time. If your wheel isn’t squeaking loud enough your case is kind of in the routine stream. I do try to be very active

Dear Bab52,
Welcome! You DO belong! I'm new to pacemaker...had my Abbott implanted 9/15/25, and so far, so good. I'm about to go ride my stationary bike a few miles...since I've been working at my desk all day. I have lived alone for 33 years (since 1990, with a few months off for Disastrous Marriage #2, and then 3 years off for Unfortunate Marriage #3)...but living alone with 3 heart conditions is daunting. I've had 3 MI's (drove myself to hospital); a CRAO (central retinal artery occlusion) leaving me blind in one eye; then developed HCM (managed with Camzyos and wonderful HCM Clinic team); then bradycardia, managed with pacemaker...all overseen by wonderful cardiologist. It's been a wild ride...but when a young friend with whom I hadn't spoken in several months asked how I was doing, I found myself saying, "Well, today I'm feeling good." And focusing on today helps. What tomorrow may bring...who knows? But I feel like I can cope with most stuff aging throws at one. This virtual conversation is helpful for those of us who live alone. Hang in there! SRL18

@durytegirl
I have had a ICD/pacemaker since 2006. I am on my 3rd device and will have my 4th in one year.

Internal cardiac defibrillator (ICD). They have been available for decades. The ICD is the device that monitors your electrical functioning for your heart. It looks at pulse rate, AFIB, VFIB.

When the settings your electrophysiologist (EP) has set it will react the way it is programmed. You might not understand what it will do as it is what your EP has set it at.

Before I give you some personal experience with this. I don't see you mentioned if you are seeing a EP. If you are not I suggest you do even if have to drive to one. They are experts in electrical functions of heart.

Most of the time EP put in ICD/pacemaker (there are singular or both) when ejection fractions (EF) get around 30. That is because (again from my EP not me) more irregular heart beats when gets that low.

Other times you may have tachycardia or AFIB, etc.

Now the surgery is what EPs say is minor. And it is for them. But you will not feel anything. What they do is connect the ICD to your heart via wires. Those wires are what device uses to control or correct your heart. It takes about a year (per my EP) for you body to encapsulate the device and generally at that point much less aware of the device.

It will be fairly noticeable. If I could pass on to you the most important thing I was told by my EP was: Think of your ICD as having your own EMS team. It is there to shock you back into rhythm when you need it.

Mine is programmed to first try to pace me out of the rhythm but remember I have a ICD/pacemaker not the single ICD. Most of the time the pace out works if not you get a shock. I will not mince meat here. For some people it is no big deal. For others a dramatic event.

But it is done to safe your life. The only reason I am alive and here to type this is because of my ICD/Pacemaker. With it I do anything I want (per my doctors but very little restrictions) because I know if my heart goes into VTAC my ICD is there to bring it back to rhythm.

Feel free to private message to me as can sent you more about this and what I have learned over the 20 years with this device.

@sepilot Oh, Mass General is a top notch place! My cardiologist went to med school there. As we age, our skin gets thinner, we take more time to heal, so, yes, surgeons hesitate, I understand the hesitation to do anything further. Sometimes the help needs to be weighed against the possible complications/harm. One of my friends was a NP and had advised people who had multiple issues to have a case manager. I don't know if that is feasible, but may be worth looking into. I am glad to read that you are trying to stay active, a big plus! Live your life! Yet, be the squeaky wheel when you need to be.

@susiewordsmith You are an inspiration! I am so glad to read that your Abbott ICD is working out so well for you and that you are exercising on your stationary bike. Keep up the good cardio work. Have you been a part of the CRAO Connect discussion? https://connect.mayoclinic.org/discussion/central-retinal-artery-occlusion/. Wishing you many, many good days.

@jc76 Thank you for posting such a clear explanation with so much information and the fact that you are living life well with it. I love the way you wrote "Now the surgery is what EPs say is minor. And it is for them." Yup! They are not the ones on the receiving end. There is that period of time (4-6 weeks) when you need to limit left side movement and lifting, but I did not find the installation painful or uncomfortable. After my septal myectomy I wrote a 16-page essay which my cardiologist asked to read. He said it was interesting to read about it from a patient's point of view. BTW, my ICD's name is Buddy, it paces, no shocks but that can happen in the future.