We’re taught to trust doctors. They have expertise we don’t. We assume that they have our best interests at heart. And usually, they do. But sometimes they are wrong. And sometimes we need better communication than they offer.
Three years ago, my primary doctor noticed that I had arrhythmia (irregular heartbeats). She was concerned that a problem was developing and that a medication I had been taking might be contributing to it. She sent me to a cardiologist, Dr. B.
Dr. B had me wear a monitor for a week and we learned that I had atrial fibrillation (afib). We changed the other medication, and I continued to see Dr. B twice a year.
There were other tests, including an echocardiogram (echo) and a stress test. We learned that I had mitral valve prolapse and a couple of mildly to moderately leaky valves. These conditions required regular monitoring, but none of them put me in immediate danger. At least that’s what I thought Dr. B said. He never mentioned surgery.
Two years later, as part of the monitoring, I had another echo and stress test. If I understood Dr. B correctly, I had the same conditions as before, and they hadn’t gotten worse. I didn’t have any new symptoms. But he wanted me to see a colleague, Dr. C, who had experience with the birth defect I’d had surgery for as a teenager. Sometimes defects like that cause additional problems in later life.
Dr. C ordered an MRI and decided that I probably needed surgery. There was a more serious problem with the mitral valve, and it was likely that one of my pulmonary veins emptied into the wrong chamber in my heart — the potential birth defect. But he could fix it. He and his colleague had recently performed a similar operation on an 83-year-old man with great results.
Lots of questions, few answers
I had lots of questions. Some were practical. My husband was about to retire, so my health insurance would be changing. We also planned a major trip for our 25th anniversary in a few months. So, how soon did I need this surgery? Could it be done before our insurance changed? Could my husband still retire as planned? Would I be well enough to take the trip?
I emailed my questions to Dr. C. No one responded. I didn’t expect help with the health insurance issue, but I did expect to learn how urgently I needed the surgery and how much time would be required for testing, treatment, and rehabilitation. I called several times over the next week. Each time, office staff told me the doctor or another staff member would return my call, but no one ever called me back.
Meanwhile, I sought a second opinion from Dr. D, a cardiologist at a teaching hospital. I got a copy of the MRI and brought all the medical records I could so that Dr. D and his colleagues could review them before the appointment.
Because I couldn’t talk with anyone in Dr. C’s office, I asked my primary doctor for a referral for another opinion. It would be a third opinion, but I wanted to hear from two doctors who would actually talk to me. She found Dr. L, and we scheduled an appointment for the week after I saw Dr. D.
A different reason for surgery
Dr. D’s practice had me undergo another echo. When he had reviewed it, he said, “Surgery is in your future.” He didn’t mean some day, or in a year or two. I should have it by the end of the year. He didn’t see the new mitral valve issue that Dr. C raised, but his echo showed those leaky valves were a serious problem, so I shouldn’t wait longer than three to six months. The doctor who would operate was very sweet and kind, but he had great difficulty communicating in English. So I would have to ask my questions of his office staff, and they would get the answers for me.
I almost didn’t go to Dr. L. Dr. D and his colleague at the teaching hospital were very persuasive. But I realized that the two doctors who recommended surgery gave completely different reasons and proposed different operations. Did the MRI and the two echos (in May and August) show results different enough that I needed surgery in August that I didn’t need in May? And which surgery did I need? Valve repair or a rerouting of my pulmonary vein?
I knew that unnecessary medical procedures are fairly common, so it was possible that I didn’t need surgery at all. It bothered me that Dr. C told me how cool it was to do an operation for a birth defect on an 83-year-old man. He wasn’t telling me what the surgery could do for me. It had nothing to do witih the afib that originally brought me to the cardiologist.
One reason that Dr. C didn’t tell me how the surgery would benefit me could be that I had no symptoms. The closest I’ve come to having symptoms is that I get out of breath if I hurry up the stairs to the L. Many people do.
Third time’s the charm
Dr. L’s practice wanted their own echo as well. Because she was in the same network as my primary doctor, she had access to all my records, including Dr. B’s earlier reports and the MRI. Dr. L’s echo included a bubble test, which showed that the surgical repair I had at age 18 was still functioning well 46 years later.
The condition of my heart hadn’t changed much over the previous two years. The leaks were still mild to moderate. I might require surgery later, but I definitely didn’t need it yet. However, we needed to address my blood pressure and reduce the risk of stroke.
What I learned
First, be an informed consumer. Ask questions. I asked why I needed the surgery. What do I risk if I don’t do it now? What are the chances I could die on the operating table?
Second, get at least two opinions before committing to surgery. Compare them. What is the problem and how will the proposed procedure fix it?
Third, use your logic. I had no symptoms. My heart condition(s) didn’t affect my life. If I had the additional birth defect, that didn’t necessarily mean it should be fixed. One could argue that anyone who has survived 83 years with a birth defect doesn’t need surgery.
Most importantly, anyone who isn’t willing to answer my questions, and whose office staff does not do what they say they will, doesn’t deserve my trust. After all, I would literally be putting my life in his hands.
The staff from the teaching hospital called me several times to discuss tests they were scheduling for me in preparation for the surgery. I had never contacted Dr. D after I saw Dr. L, but somehow no one had noticed that. I explained that I had not agreed to have surgery. If the doctors thought surgery was necessary, I wanted them to explain to me exactly why that was so. They never called.