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Pacemaker recipients: Looking for support from others

Pacemaker & ICDs | Last Active: Jul 14 1:01pm | Replies (537)

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Profile picture for jimgrupe @jimgrupe

@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.

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Replies to "@kb49 When I was a kid, the rule was "Always trust your doctor.". As an adult,..."

@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.

@jimgrupe

I am very sad to hear about your experiences with the medical care system where you live. I hope for your success in finding an alternative.

This makes me feel incredibly lucky that my 90-minute ambulance ride from the closest rural hospital where I live ended up taking me to St. Vincent's Hospital in Portland, OR. Every single doc, PA, and nurse with whom I've interacted is excellent.