I’m one of those patients who researches everything on the Internet. I work for RadioMD, so of course I would.
About seven weeks ago, shortness of breath resulted in a fainting spell in my ballet conditioning class. I’m aware of an anaerobic asthma condition but usually don’t need my inhaler for ballet conditioning. I stepped out to catch my breath, blacked out, and woke up after 30 seconds of bonding with the floor.
I was breathing fine when I awoke and refused the ambulance offered to me. My husband zipped in to collect me. He knows I’m strong-willed and independent, so he didn’t argue when I said I’d see a doctor the next day.
I kept that promise. But, it was more complicated than it set out to be.
In October of last year, I’d been prescribed a hormone by a doctor for female nonsense. I returned to the same office to find out why I fainted, thinking they would know my situation since they prescribed the hormone and would have my records from October. A primary care physician in the same office was “assigned” to me, so I assumed there should be some awareness of my history.
The doctor was out that day, so I met with his nurse practitioner. (I’ve had good luck with NPs before, so I had no reason to doubt her skills.) The diagnosis was high blood pressure and slight anemia. Nothing she observed explained what happened the night before in class. They drew blood and sent me on my way.
Two days later I received a call to discuss my results. Guess what? Not only did I have high blood pressure and slight anemia, I was also diabetic (A1C at 6.7) and had high cholesterol. My platelet count was also significantly above normal. The directive was to monitor my glucose and blood pressure at home for a month then return for a fasting blood test.
I was floored. My blood test four months prior only indicated slight anemia, so where did this other stuff come from? What was different between then and now?
“Should I continue with the medication the doctor prescribed for me?”
“Yes,” she said.
“Um, I read the package insert and it said that it shouldn’t be taken by anyone with high cholesterol, high blood pressure or diabetes. The older folks in my family have a history of stroke. Are you sure I should continue taking it?”
She assured me that I should continue because it (the med) couldn’t have caused the problem. She believed I went into diabetic shock because I had a meal six hours before working out, so it must have been low blood sugar. I wasn’t allowed to dance or work out until after my next blood test. (I cheated on that part, working out in my living room with supervision.) She didn’t listen to me. I stopped taking the meds, got copies of my blood test and left. For good.
Let me give you a little background on me seeing doctors. I don’t go to the doctor unless I decide it’s absolutely necessary, or my husband insists I go because of an issue. I don’t want to spend the money visiting a doctor to find out it’s nothing, or to have a practitioner treat me as if I’m wasting her time even though I’m paying for the service. I would rather stay home until the problem becomes unbearable. The pain of going to the doctor has to be less than the pain of not going. My motivation this time was to get back into dance class. The surprise co-pay after a mere five minutes with the nurse practitioner to get my blood test results was the icing on the cake.
I haven’t had a doctor that I really trusted since my husband worked for a university and we were tied into their health care program. I could see any of the university doctors and feel like they really cared and were really listening. I’ve had one nurse practitioner since who listened. Everyone else I’d seen to this point seemed to dismiss my concerns without listening to them, treat me like I was an idiot for coming in when I could’ve stayed home and taken cough syrup for a couple extra weeks, or chided me for not coming in sooner.
That “helpless” feeling is enough when I have to go to the doctor… I don’t need to be ignored when I have valid information about my own body. I (and only I) live in that body, so I have a pretty good idea about its peculiarities.
Cut to: a meeting with my best friend. She used to work in a pathology lab and she knew what the different levels on the blood test meant. She wanted me to get the best care possible, and she knew that wasn’t happening. At all. I wasn’t sure what to do next, but I knew I wasn’t going to return to that office.
Many internet hours and podcasts later, I considered the possibility of a cardiac event or blood clot causing the episode. A fatty lump on my upper thigh (that I’d never seen before) prompted me to contact a nearby urgent care office. My husband had visited them recently, and he sang the doctor’s praises.
This doc resolved right away that the lump wasn’t a clot. He also listened to me when I explained the hormones I had been taking, the surprising test results, the dietary changes I’d made, and the diagnosis from the other office. He scheduled me for a fasting blood test and did an ultrasound of my leg veins, just to be sure there wasn’t a clot. I got a chest x-ray because I blacked out a month before. He referred me to a cardiologist.
Since then, my BP has moved into a high normal range. I’m not diabetic. My cholesterol is a high normal. My platelet count is normal. My EKG is normal. My health is improved. I made moderate diet changes, stopped taking the meds, and changed doctors.
The cardiologist agreed that I made the right decision when I stopped the meds. He also questioned the validity of the first blood test. There may have been a lab error, or they may have mislabeled my blood sample. He also listened to me. He said my new doctor must really care because he called the cardiologist to explain my case and concerns while I was in his lobby.
I don’t expect my health care providers to just nod their heads and agree with my concerns. I’m okay with being told what I thought was a blood clot is actually a fat deposit.
I’m not perfect; I don’t mind being wrong.
I DO expect my health care provider to listen to my concerns and acknowledge them. That little bit of listening goes a long way.
The lesson? If you don’t feel like your healthcare provider is actually listening to you, or is doing a blanket of tests because that’s “protocol” for each patient, no matter the circumstances, don’t be afraid to stand up.
It’s not easy to “break up” with someone who is supposed to know what’s in your best interest. We’re conditioned to trust… “doc knows best,” right?
Nope. Not always.