Pacemaker recipients: Looking for support from others

I'm new to this site. I've been having mini blackouts and found out it's caused by very slow heart rate that you get when you have Afib. I had a 4 sec pause. It caused spatial disorientation. I'm hoping the electrophysiology dr will consider putting in a Pacemaker, but since it's all new to me I'll have to research the latest best safest kind.

I’ve been trying to think how to post this, but I think it’s important particularly for new members to know I’ve had my pacemaker a year and a half and in that time I’ve been fighting an issue of having trouble breathing every time I move my arms I’ve asked on this site as well as every doctor’s appointments. What could be causing this issue? I’ve had multiple test, including an echo a stress test a heart Cath nothing could be found to cause this issue. My primary care doctor sent me to a pulmonologist. They couldn’t find anything there all this time. My doctor kept having the physicians assistant give me the results of the test saying there was nothing they could do. I finally got a little upset with the physicians assistant and demanded to see a doctor because the physicians assistant told me at my age I probably just have to learn to live with it. I was 75 when I had the pacemaker on planet and now I’m 77 I was not ready to accept that when I finally got to see the doctor. The doctor said they done everything and couldn’t figure anything out, but they would call in people from Medtronic the makers of my pacemaker and see if they had any advice two technicians. Medtronic came to see me in about 15 minutes. They had figured out that it was simply the settings on my Pacemaker. They set the pacemaker correctly and now I have no problems at all to think that I spent a year and a half having trouble breathing and not being able to do the things I wanted to do it’s ridiculous so I’m telling people that are getting a pacemaker today. You have to keep fighting but eventually they’ll get it right and people that are stuck seeing physicians assistance. You have to keep fighting to see a doctor cause eventually, the doctor agreed that he didn’t have the answers and was able to push me to the technicians from Medtronic who worked on the pacemaker to get the settings, right I’m sure there are some good positions Assistance out there unfortunately I didn’t have the right one.

@kb49 I had a similar issue. The EP who implanted the PM in 2020 refused a follow up appointment. Four years later another EP was able to work with me to change the settings so I had better breathing ability and stamina. This device is complicated. One setting doesn’t fit everyone.

I’ve been trying to think how to post this, but I think it’s important particularly for new members to know I’ve had my pacemaker a year and a half and in that time I’ve been fighting an issue of having trouble breathing every time I move my arms I’ve asked on this site as well as every doctor’s appointments. What could be causing this issue? I’ve had multiple test, including an echo a stress test a heart Cath nothing could be found to cause this issue. My primary care doctor sent me to a pulmonologist. They couldn’t find anything there all this time. My doctor kept having the physicians assistant give me the results of the test saying there was nothing they could do. I finally got a little upset with the physicians assistant and demanded to see a doctor because the physicians assistant told me at my age I probably just have to learn to live with it. I was 75 when I had the pacemaker on planet and now I’m 77 I was not ready to accept that when I finally got to see the doctor. The doctor said they done everything and couldn’t figure anything out, but they would call in people from Medtronic the makers of my pacemaker and see if they had any advice two technicians. Medtronic came to see me in about 15 minutes. They had figured out that it was simply the settings on my Pacemaker. They set the pacemaker correctly and now I have no problems at all to think that I spent a year and a half having trouble breathing and not being able to do the things I wanted to do it’s ridiculous so I’m telling people that are getting a pacemaker today. You have to keep fighting but eventually they’ll get it right and people that are stuck seeing physicians assistance. You have to keep fighting to see a doctor cause eventually, the doctor agreed that he didn’t have the answers and was able to push me to the technicians from Medtronic who worked on the pacemaker to get the settings, right I’m sure there are some good positions Assistance out there unfortunately I didn’t have the right one.

@kb49 When I was a kid, the rule was "Always trust your doctor.". As an adult, my personal experiences have given me MANY reasons not to.

More to the point of this discussion, I had a pacemaker implanted just a few weeks ago, quite possibly because the cardiologist I was going to dismissed the results of a stress test showing a Stage 1 heart block as a "test error" and prescribed a targeted beta-1 blocker, known to cause heart blocks, for my high blood pressure. Six months later, I was in the ER with a Stage 3 heart block.

Po-Op, I monitored my BP closely and found that it was every low. I called multiple doctors, including my PCP, the cardiologist, and the surgeon. The only one who even answered was a nurse from the surgeon's office, who told me to cut back on the BP meds until my BP was up to normal. I ended up cutting them back to ZERO, and still my BP was too low, EVEN AFTER MILD STRESS. That result was a major clue to what followed, but again I called everyone and again no one thought it important. Within a couple days I was back at the ER with an acute pulmonary embolism - blood clots in my lungs from the surgery - and gasping for air.

I am now recovering from the emergency surgery to remove the blood clots. Suffice to say that I am changing doctors AGAIN. In fact, I am changing from anyone associate with the particular hospital/medical provider.

I don't know what it takes to find one who actually pays attention to the patient these days. It seems to me that unless the grim reaper has already got a foot in the door, they all pass you off to a trainee in their billing department.

@jimgrupe I am sorry to read about all of the frustration you have experienced for your heart and pacemaker care. Yes, you deserve to be heard and receive the very best care, and we each need to be our own vocal advocates. I do not know where you live but recommend seeking out a Center of Excellence (COE) for heart care. If one is not nearby, many people in the Connect discussions travel for care. Also, teaching hospitals and doctors with privileges at these places (medical school training grounds) very often are top facilities with excellent caregivers as I have discovered here in Upstate NY. I just did a search; in my browser I typed in "heart block experts capital region ny" and my electrophysiologist is listed among them. Wishing you success in finding a doctor you are comfortable with. Let us know how your journey is proceeding.

@kb49 When I was a kid, the rule was "Always trust your doctor.". As an adult, my personal experiences have given me MANY reasons not to.

More to the point of this discussion, I had a pacemaker implanted just a few weeks ago, quite possibly because the cardiologist I was going to dismissed the results of a stress test showing a Stage 1 heart block as a "test error" and prescribed a targeted beta-1 blocker, known to cause heart blocks, for my high blood pressure. Six months later, I was in the ER with a Stage 3 heart block.

Po-Op, I monitored my BP closely and found that it was every low. I called multiple doctors, including my PCP, the cardiologist, and the surgeon. The only one who even answered was a nurse from the surgeon's office, who told me to cut back on the BP meds until my BP was up to normal. I ended up cutting them back to ZERO, and still my BP was too low, EVEN AFTER MILD STRESS. That result was a major clue to what followed, but again I called everyone and again no one thought it important. Within a couple days I was back at the ER with an acute pulmonary embolism - blood clots in my lungs from the surgery - and gasping for air.

I am now recovering from the emergency surgery to remove the blood clots. Suffice to say that I am changing doctors AGAIN. In fact, I am changing from anyone associate with the particular hospital/medical provider.

I don't know what it takes to find one who actually pays attention to the patient these days. It seems to me that unless the grim reaper has already got a foot in the door, they all pass you off to a trainee in their billing department.