How do you deal with lack of trust in cardiologist or medical staff? How do you know that you are not being overly-concerned?

My 86-year-old husband and I feel we have been in a twilight zone since undiagnosed heart attack August 24 (ProBNP 1,734, though it had been very normal as of routine check April 2018). On August 24, ER diagnosed new atrial flutter / tachycardia, which are now persistent. DH can’t stand or walk without tachy. Before Aug. 24, he could walk up/down 100 stairs (with rests). Now he can’t even stand or walk slowly. The flutter/arrhythmias have been constant since Aug. 24. Breathless, swelling, very fatigued. This guy is a former psychologist and weightlifter and quite conscious of the need to maintain physicality.

Upon release from ER, instructions were to see cardiologist the next day or week. But Cardiologist referred DH (Dear Husband) to primary (Sept. 5). Primary ordered chemical stress test and Eliquis (anticoagulant). Shocked by the cost of Eliquis, I went looking for discounts. While on Eliquis web site -- a very clear warning: Do not use this drug if you have an artificial heart valve (which DH does). A week of calls to primary and cardiologist, who didn’t communicate with each other. Cardiologist said DH did NOT need the stress testing PCP had ordered. PCP allowed Warfarin in place of Eliquis, but Cardiologist wanted to stay with Eliquis. Another week of self-research to help DH affirm he wasn’t going to risk Eliquis (hey, leave alone pay for it). Another week to get the Warfarin RX. Cardiologist refused to see DH til his routine six-month checkup, which was Oct. 12. In the meantime on Sept. 5, Cardiologist tech angrily performed a two-second EKG and impatiently said “There’s the flutter.” Slammed out of the room, and angrily ordered DH to “wait.” They were going to do a cardioversion. DH also has severe back pain from failed back surgery, and the chair/exam table was excruciating. I went out to find tech and to say he was in too much pain and not quite ready for another procedure, that we were stressed by not knowing what was going on. She snapped and harshly ordered DH “You sit and wait.” We became upset with her disrespectful attitude left.

The next day DH phoned the Cardio to explain that he was nauseous from pain and needed to speak with cardio, not techs, and needed to ask questions. The longstanding Oct. 12 appointment was left as our only option to speak with the doc.

On Oct. 12, cardiologist pushed for cardioversion, implying it would cure all and was a piece of cake. We had already read a great deal about the statistical outcomes (roughly 50% will go back into arrhythmia rather quickly and that the procedure could create new arrhthmias including ventricle). We asked the RN what seemed like intelligent questions, including about the anesthesia (DH has endured a six-hour heart/bypass surgery and a seven-hour triple laminectomy since 2015). RN queried Cardiologist, who dismissed our concerns and basically patted DH on head saying, “There, there.”

We twisted our growing fears around to where we were in blind acceptance, and about to comply with the treatment recommendation. When the cardioversion scheduler called – they hadn’t even checked to see if DH’s anticoag factor was within range and for how long! It’s supposed to be within range for at least 3-4 weeks to reduce risk of stroke. DH had only begun taking Warfarin, and was only in range for maybe two weeks.

Finally, DH had kept track of his heart rate over the prior two months, and his rate changed wildly from tachy to bradycardia (20-30 bpm) at unpredictable times. Clearly, this was not simply flutter? This ?could? be Sick Sinus Syndrome?”or something else – for which cardioversion may not be the best. But no additional diagnostics were deemed necessary by cardiologist (phone consult via RN).

That caused us to feel we needed a second opinion and to ask our questions (now we have to wait til December 3). The pharmacists at the anticoag clinic all seem puzzled by why DH had to wait so long to speak with a real specialist.