Pacemaker recipients: Looking for support from others

@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.

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.

@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.

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?

My name is chary I had a pacemaker implanted about 7 years ago at night I can only sleep face down. Waking up in the morning lately my upper and lower chest burns slightly through my underarm to my back my left arm is loosing strength and has a bad tingling sensation. I’m a63 year old W/M had a quadruple bypass a year later the pacemaker this last couple weeks has been painful anyone else?

I agree. It would be good to communicate with those who have “been there”. Extremely scary navigating heretofore uncharted waters alone and learning what to expect rather than worrying about a scary unknown would be helpful. Does this board qualify?

Hello Charly
I am not sure I can answer your questons or address your concerns very well since they do not reflect my personal experiences. But I did want to acknowledge your post. I am hoping the symptoms you described have eased somewhat.
I do have a pacemaker (for just over 2 years) but I have not had any cardiac surgery. My first though in regards to your comment "my upper and lower chest burns slightly through my underarm to my back my left arm is loosing strength and has a bad tingling sensation" is to suggest you see your doctor for a thorough examination. Although it has been a fairly long time since the surgery - 6 years or so - I would not think of anything like an infection but perhaps something like Complex Regional Pain Syndrome (CRPS). The symptoms described in the article sound a great deal like the ones you have supplied. I have included a link to an article which might shed some light on your issue:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5729003/
I think only a physician can diagnose such an issue and becuse it is noted as a "syndrome", I doubt you will ever get an expanlation of why you are experiencing this. But, speaking for myself, I would take some comfort in knowing that it is a "thing" and others have experienced it.
As for only being able to sleep face down, may I ask why? It is becasue of pain from the pacemaker? Or do you have an underlying issue like sleep apnea? I have obstructive sleep apnea and have been using a CPAP machine for over 20 years with excellent results. When I was first prescribed the machine, I was told it was best if I could learn to sleep on my side - at the very least. Sleeping on my back would result in more episodes of apnea. Do you experince something like that?
I, over time, learned to not sleep on my back and now sleep primarliy on my stomach. And, after the pacemaker implant, I added tucking the corner of my pillow under my left shoulder in the front which seems to give a additional support to that area, making sleep in, in general, more comfortable.
I hope my response can shed some light on your concerns. And I wish you all the best in finding additional answers and support in your journey.
Wishing you good health and Seasons Greetings.

Thank you for the information i thought i was alone it was just me , on my next doctors visit i will insist on some help not just a visit as im informed thanks again stay well🙏charly