Pacemaker recipients: Looking for support from others

Thank you. I am/was very active physically biking 12mph for an hour and have seen that trail off since my first ER visit. I’m having a Holter monitor soon but this seems to be dragging on. An EP has been mentioned but this is yet to happen and my messages (which I appreciate to be able to communicate) seems to bounce between many non MD staff at Mayo.. I’m very worried about quality of life from here and being able to regain my level of physical activity so your comments are encouraging. How do I get to see an EP at Mayo?

@unclefreddy
I am not sure if your question is for me. If you put in your reply the tag for the person you want to directly respond to that will let them know.

If you were asking me. I was diagnosed in 2001 with HF. My EF was going down steadily from 2001 to 2006 to 30. My local cardioloist referred me to a EP (Electrophysiologist) to determine ICD. At that time I decided to go to Mayo Clinic Jacksonville for second opinion.

I met with the Director of Physiology and he recommended not only a ICD but pacemaker to help my heart get the electrical signals. He also referred me to Mayo HF specialist who wanted me on different medications and higher doses. I chose to change my medical care to Mayo Clinic.

I was seen in January 2006 and my ICD/Pacemaker was put in February 2006. I am on my 3rd one now which has another 4 years of battery life.

My ICD has saved my life many times. I have not had any shocks for several years now with new medictions and some programming changes to my pacemaker.

You should be seeing a electrophysiologist (EP) if possible. If not a cardiologist who is expereinced with ICD/Pacemakres.

A EP is the expert in electrical issues of heart, ICDs, Pacemakers, etc. Most cardiologists will referr you to a EP just like my original local cardiologist did that I mentioned above.

You can always have your ICD or Pacemaker, or a dual device like mine, done at a major medical facility like Mayo, Cleveland Clinic, etc., and have your local cardiologist work with the EP who puts in your ICD, paceamker or dual device.

I am not sure about your question but for me I would be seeking a EP for consultation if at all possible. If not a cardiologist who is experienced with ICD/Pacemakers.

How long did they wait to decide to give you a pacemaker? My first visit to the ER was two months ago and I go back and forth with PAs and NPs but it seems a long time to decide. Do you actually see a cardiologist? This is getting scary.

@brightwood
I just wanted to add. I have PTSD anxiety/panic disorder. On a post on a different subject my urologist wanted to do a transrectal biopsie because I had heart failure. I DID NOT want that done under local anesthetic not only from the stress of being awake but the increase in infection rate. So I had my HF doctor communicate with my urologist my heart failure was NOT and issue with using general anesthesia.

Now on subject of ICD/Pacemakers. I am on my 3rd one. I can emphaszie with your anxiety over getting one. What I can tell you at Mayo Jacksonville my EP gives a tranquilizer that is quite powerful and you relax. He then does the drug called propronol. That is a sleep inducing drug and but you are in the light sleep mode but not in a deep sleep. An anesthesiologist is there to monitor you but your are not under general anesthesia.

I am not sure where you are going for you pacemaker but check with them about what they do for the procedure. I can only speak for myself but after three of the procedures. I have no anxiety over doing another one as I felt nothing, and don't remember any of the procedure as that is what the propronol does.

I think the term local anesthetic indicates just getting a pain medication at the site. This is not what Mayo Clinic does. And I like you would not havae it done that way. You can always go to Mayo or Cleveland to have it done and then have your local cardiologist or EP take over after that. That is offered at Cleveland and Mayo.

I have had medical anxiety for several years—prior to the discovery that I needed the pacemaker—and was quite anxious at the thought of doing it under local anesthetic. I tend to be a worrier, and that has seemed to increase with aging. So I welcomed taking an induced ’nap’ for the procedure. Just me. (I experienced a panic attack a decade ago…) People who can be awake during the implantation are braver folk than I. Peace.

@jacquelinemmott @jer22
I have a Boston Scientific. I am on my 3rd. If you are having an MRI some older pacemakers and their wires are not MRI compliant. I had some wires put in in 2006 that were not MRI compliant.

When I needed a MRI Mayo Pace Clinic came in prior to MRI and shut off my pacing. When I finished the MRI they turned it back on. I had no issues.

@jer22, Again many of the new Pacemakers and AICD/Pacemakers are MRI compliant and a lot more less sensitive to Microwaves, electrical devices than old ones. Since all are different it is best to check with both your Pacemaker surgeon AND your device manufacturer. I have found device manufacturers are very willing to help with questions and guidance.

Sometimes what your manufacturer of device will say and what your cardiologist or Pace Clinic says can be different. Thus when I hear this I go back and check with both.

Thanks all for the good info, Great site for info, Hope they do a support group for all the pacemaker recipients in the future.
JP

I’ve had a pacemaker for Afib and sick sinus syncope for over 20 years…. The electro magnetic field is what you are worried about. You don’t want magnets to be closer than 6 inches from the pacemaker. This is because it could change the settings on the pacemaker.
You shouldn’t go thru the check in machines at the airport, or let them wand you through security. They will have to hand pat you down.

I’ve done all of the above, by mistake, and never really had a problem… but I was scheduled for my pacemaker check within days after… so the tech probably just reset my pacemaker if there were any problems.

Your life will be much better after you have the pacemaker put in! Good Luck!

Had a Medtronic PM implanted in Aug and doing well!! I first interrogation and echo is this week! Have had a couple “check ins” during this time with good results! Walking 2-3 miles a day and hardly notice having it anymore! Hang in there!!

Jer, Happy Halloween to you as well !

I had a Medtronic pacemaker implanted in April and have had no issues. I’m not aware of it even being there now. It transmits periodic readings to my pacemaker clinic and I have heard from once since it was placed because I was throwing svts. Even then I wasn’t aware what was happening but the pacemaker recognized them and alerted the clinic. I went in and discussed changing the medication. All good since then. I also had bradycardia before which prompted the pacemaker. I had more and more episodes of suddenly losing consciousness. That has stopped completely with my implant. No more waking up on the floor of the market! I have just found out that I’m scheduled for a scan (for an issue not related to my heart) and Medtronics plans to have someone there to disable the device before the procedure and then restart it after. Life becomes far more complicated as we age but I am thankful for what technology can do for us. I have several friends with pacemakers and they, too, have gained better life with them. Be kind to yourself, utilize deep breathing or meditation or prayer now to prepare yourself. Wishing you the best.