Pacemaker & ICDs: Introduce Yourself & Meet Others

I had a heart attack at home and my husband did CPR and brought me back and then called 911 and when i got to the hosp i had another attack and they had to paddle me. I had so many IVs in both arms and they took blood every 4 hrs plus i had a painful Cath done in my right arm. I was so so sore all over. Then the surgery. Btwn the paddling and the surgery my chest was soooo sore. So anyway i have a ICD. It is both a Pacemaker and a Defib. My arm and pit hurt. And my back. I just have to wait till it heals i guess.

My pacemaker is not the same as yours so there may be some variation in how things are measured. The first time I walked briskly after my pacemaker, I exceeded the pace rate quite a bit. The symptoms of bradycardia came back: exhaustion (I don't remember if I had chest pressure or not). When they upped the pace rate, that exhaustion wasn't there. I am quite active and have had the level changed more than once. I am not a doctor but if you are getting bradycardia symptoms when exercising I would suggest you contact your electrophysiologist and make an appointment (see below).

I haven't seen the surgeon or a cardiologist since my procedure. I am registered at a heart device clinic at the hospital at which I had the implant. The clinic can also monitor my pacemaker through an app I have on my watch. If I have had any concerns I call the clinic and talk to the doctor/physiologist who answers my questions. If necessary, we make an appointment, they do a check and we decide if we need to make any changes.

This has been my experience. I hope it helps.

I guess I don’t yet know how to get around on this MCC. But this is another reply to mfenn and anyone else who can contribute to my issue.

I had my Boston Scientific PM implanted 4 years ago. An EP is now making changes to the settings. My upper sensor rate has been set to 150 and the lower rate is 60. That was done yesterday.

A month ago upper rate was set at 130 and raised to 145, whereupon I felt less exhaustion when walking quickly. Hoping for even better results I asked to have it raised to 150 yesterday.

Does anyone know how much higher the rate could be set to possibly improve one’s comfort level and ability to walk for a block without having to stop because of feeling exhausted? I have no trouble at the gym where I do 30 minutes on the stationary bike. It’s only when I have to expend my energy walking.

I am so appreciative of the advice I get from MMC and thank everyone who is able to help.

@jackiet
Be patient. It takes some time to program your Pacemaker to what is best for you. This will go on for all the years you have one.

I have had a Boston Scientific since 2006. I am on my 3rd one. I go through constant changes to my ICD/Pacemaker programming based on issues I bring up and or shocks.

I do not use the exercise mode for the reason that I did not like the feeling.

If you have a EP that is a specialist cardiologist with electrical issues of your heart. Talk to them about your exercise and what you want.

We on MCC do not know your medical history, the reasons you got a Pacemaker and thus we should not give you medical advice, just our experience. Your questions are good but should go to your EP. Have you told your EP what you posted on MCC?

I am a patient at Mayo Jacksonville. We have a portal system that I can contact my EP (as well as all my other doctors) and send messages and get answers. It is a great benefit.

I have a home monitor system that can do manual checks of my ICD/Pacemaker and a program to do a check every 3 months. Once a year I go into Mayo for a complete check along with wire checks, etc. I can go in if needed for checkup and tune up if needed.

But I suggest you let your EP know what you are asking about to help with your exercise routines.

Thank you @jc76. What is interesting about your mentioning the need for patience is the fact that I was never told that they could reprogram my Pacemaker. Even when I told them I still had bradycardia symptoms after the PC was implanted (over four years ago), they would not sign me up with a doctor to have that looked at. The cardiac EP who implanted the device did not grant me a follow-up appointment after the surgery. I did not have that option. I wonder how many other PC patients have had that kind of experience..... I guess you did not. You were fortunate.

"You do not use the exercise mode for the reason that I did not like the feeling." They had my PC programmed at the exercise mode. I did not at the time of implantation know that, of course, and did not have any control over it.

Yes, when I finally found an EP who would speak to me about it I told him everything. That is when I started to learn about all these things. Yes, there are patient portals I use. Yes, my PC is checked every three months just as yours is.

I apologize for not getting the post you responded to tied to my previous posting, which got lost somewhere. As I mentioned, I seem not to have figured out all the ins and outs of how to post and review posts on the Mayo Clinic Connect site. I will try to figure it out.

Thanks everyone.......

@jackiet
I am fortunate to be at Mayo Jacksonville. My EP is the director of Electrophysiology Department and Pace Clinic and did all three of my surgeries.

Mayo Jacksonville has an outstanding pace clinic.

When I read about those that have experienced the mental anxiety of not getting excellent and informative care, I realized I am fortunate to be at Mayo Jacksonville.

I am not sure which manufacturer of your device is. Your manufacturer will have a web site. You can put in your device model and get excellent information on what it can do, etc. Also, you can send questions to them, and they will answer.

I have a Boston Scientific device and even though Mayo Jacksonville is excellent I have used Boston Scientific web site to research many things and to ask additional questions.

Boston Scientific does a lot of tests and research of their products. I had a question once about smart keys right next to device. Mayo Pace asked me to check with Boston Scientific as they had not seen a problem with it but wanted me to be sure by contacting Boston Scientific.

On my exercise setting. It was never put in when received the pacemakers. One day a pace tech commented on me exercising a lot and asked did I want the exercise mode turned on. I said yes. Within a few days I had the ICD try to pulse me out of tachacardia and then shocked me.

I could feel the exercise mode kicking in prior to this and did not like the feeling. I don't think my heart like it either. So I had them turn it off and did not get another shock.

@jackiet
Absolutely OK to vent on this web site. One of the reasons MCC is here is to share your experiences with others. Some of those are positive and some are negative. You will see many have experienced what you have experienced and what they did about it.

I have been on MCC for almost 2 years now. I wish I had known about it prior to my prostate diagnosis of cancer. I was invited by Mayo Jacksonville to attend a prostate cancer seminar and that is where I learned about MCC.

When I decided to have proton versus photon during my second opinion is was mainly based on my disappointment with not the information given but the manner it was done. In some of my original posts I listed those comments and how it made me feel. Getting off my chest helped!

On my highlights I listed being a introvert and would never have spoken out like I am able to do on MCC.