Pacemaker recipients: Looking for support from others

Eunice18, I have also made such a request. I contacted Colleen to ask if this would be possible. There are many of us out there who have various cardiac issues but also have pacemakers or ICDs or CRTs. Some of the issues we experience with these devices are a topic all unto themselves. I think many people with pacemakers checkout the Mayo site but see nothing specifically for them in support group listing. So they move on. I have been chatting with others I know who have pacemakers and they do not see the point of joining since it appears there is nothing there for them. .
I think we have to build some momentum by sending in requests for the formation of such a support group. The more of us who ask for a support group dedicated to those of us with pacemakers, the more likely it will happen. The moderator(s) need to know that there is interest for a support group. And they will only know if we take the time to ask for one. Let's make it happen!

I put a request in the Feedback, but don’t know if that will work???

Agree!!!!! Any ideas to make that happen?

But first we need a dedicated and separate pacemaker support group category. This thread is incredibly long and involved. A more direct connection would be helpful. Your thoughts?

@balubeje
Concur,
Colleen can you set it up.

I had a ICD/Pacemaker inplanted in 2006 at Mayo Jacksonville. I have been through so much with it I could fill pages. My experience and it is both bad and good. It now spans almost 20 years and on my 3rd one. Bottom line, would I have it implanted if had to do all over, YES! I am only alive and writing this because I had it implanted.

I learned so much from Pace Clinic at Mayo, my Electrophysiolgist, cardiologists and my own research. I also go to the manufacturer of my ICD/pacemaker (Boston Scientific) which is also a great place for research and will also answer your questions about your specific product.

Where I used to worry about having it I now smile knowing I have it.

Great idea for pacemaker group!!!!

@gut Yikes. Sounds like a lot of medicine. Try various vagal maneuvers (can be found on the internet). I'm 81, male, with ocasional AFIB and tachycardia. I'm only taking 25mg of metoprolol daily, and have yet to have to take any more metoprolol as a "pill in the pocket" if an event occurs (HR over 120 bpm). Instead, the vagal manuever has worked for me. Good luck.

My mother had ALZ (early onset). I know how difficult it is to deal with. I think your concerns about a pacemaker for your father are right on. A discussion with his GP as well as the cardiologist would be helpful.

Glad your insulin pump is doing its thing. We can do so much more "living" with the help of our electrical friends. 🙂

Yes, this is very helpful. I was inquiring due to my father’s situation.

He is 87, has CHF, with CKD, an aortic aneurysm (under 5), multiple PVCs, hypothyroidism and ALZ. We’ve been told he may need a Pace maker one day. Quadruple bypass in 2000 and 4 stents since. As we anticipate it, we are concerned with his cognitive ability to leave the device alone for healing. He is obsessed with any little thing on his body and picks at it constantly, asking what is this? Moles, skin tags, etc. We fear he would become highly distressed with something under his skin, he could not understand what it is or remember what it is. Thinking of palliative care going forward.

It’s awesome the device is working for you! So great to see this! And, I wear a Medtronic 780g insulin pump! Love it! It’s changed my life!

I have had my pacemaker for almost 2 years. Very simple procedure. You can feel it under the chest. The only visibility to others is a small scar that fades with time. Healing is variable, I assume, with different people. I was given a sheet that outlined things to do and not do with a timeline. Initial healing takes a couple of months. I do strength training including deadlifts weighted squats and bench press. I did nothing for 8 weeks. When I returned to the gym, I was scared but I took everything very slowly starting with basic body work. When I began weights again, I started very low. I have a trainer so I was supervised but the guideline has always been to listen to your body and proceed gradually. For the most part, I don't notice the pacemaker. I do get discomfort sometimes but I've never had pain. I also do Zumba/occasional Yin Yoga and have never had a problem.

My reason for a pacemaker was bradycardia. I had all the classic symptoms: fatigue, shortness of breath, little dizziness after some exercises. My heart rate was 31 when I went to the hospital. I don't think it is an exaggeration to say that the pacemaker gave me back my life. My pacemaker is a Medtronic. They have a good website for patients and an excellent 'call with your question' line. I assume other manufacturers have resources too.

Hope this helps