To coin one of my oft-used phrases — ‘we’re going to have a sharing moment!’
I live with spastic diplegic cerebral palsy. Years ago an episode of chest pain required that I go to the city hospital ER 40 minutes away. I’m not a ‘frequent flyer’ in the ER so to make the decision to go was not without a lot of thought. Do I really, really need to? At the time my husband was still living, supporting my decision.
Earlier in the day, while at the mall, I was having difficulty wheeling my Quickie chair up a ramp which normally was not a problem given my powerful upper body. I worried because my heart was hurting. My family doctor at the time made house calls and while attending me at my home after the mall outing, put me on his portable heart monitor. He was concerned enough after the exam to insist that I go to the hospital immediately though there was no need for ambulance transport.
I went to the hospital ER, outlining symptoms in detail, noting that my family doctor felt that I experienced a mild ‘cardiac event’ based on his exam. I didn’t have a long wait, thankfully. Given my status as an ‘at risk’ patient, I also have a need to be really proactive when it comes to avoiding too much contact with germs -- colds and flu. For me, a simple cold could develop into pneumonia.
The ER doctor arrived and I took note of the fact that I wasn’t invited to get out of my chair to lie on the exam table. As was my habit, I wheeled around the space, mentally photographing the environment - part of my modus operandi in the event that I did have to stand up and make my way to the table. I prefer to move under my own power as being ‘manhandled’ had potential to cause me to totter/balance shift; then I have to ’re-balance’. A fall at my advanced age poses even greater risk, given I am a senior citizen with a since-birth brain insult but still uprightly mobile; quite an accomplishment! I wasn’t about to jeopardize my health and wellness any further by landing on my bum and possibly breaking or dislocating a limb. It’s important for clinical staff, whether nurse or doctor, to ASK if a patient with obvious mobility disorder who IS able to walk, would like or requires assistance. To not ask and simply latch onto them without regard for their personal safety is inappropriate as their boundaries were not respected.
I also noted another ‘problem’ with the ER doctor’s protocols. She did not wash her hands. I had observed her munching on a slice of pizza just moments before she came to see me but said nothing. I was asked about the reason for my visit while the doctor, rarely making eye contact, looked at the chart. She then asked why I was in the wheelchair and was informed about the spastic diplegic cerebral palsy status. Much to my shock, she asked what CP is. Confidence in this physician went right out the window, barreling down the highway.
The doctor put the chart down, bent over and leaned into me and with her thumb pushed on my stomach. There was no blood pressure taken, no temperature taken, no questions about chest/heart pain asked, no questions about what I ate that day. Red flag! Red flag! Red flag! Red flag! In just seconds, the diagnosis - indigestion. She wrote a script for Propulsid, and with that, the examination had concluded.
For the record, I’ve never had indigestion in my life. I would be remiss, however, if I didn’t point out that in many patients, heartburn and indigestion can and do mimic symptoms of a heart attack so ALL avenues must be explored.
I accepted the script and bid the doctor good day, wheeling away without a backward glance. There was NO WAY I’d be getting that script filled. Once at home, I researched the drug and was stunned to learn that it had potential to cause fatal arrhythmia. It was finally taken off the US market in 2000. I had a conversation with my father, a old-school country doctor, and within days was examined by a cardiac internist in Fredericton. More tests followed, and I was subsequently diagnosed with grade two aortic insufficiency; two pinhead sized holes in the valve. Had I taken the drug as prescribed by that ER doc, I could have found myself in serious difficulty, compromising the ‘golden hour’ of care lost because my proximity to the hospital would have most assuredly worked against me.
Fast forward over two decades later, and I’m still ticking along, paying attention to my body; 70 next year, I take only one script drug. My ‘good medicine’ is working!
My point in sharing this story is to make people aware that they have a right to assert themselves. To all doctors who may be reading this column, attention must be paid not only to what YOU see and hear from the body you examine, but what the patient is telling you. Hearing and listening is vital to outcomes. Let those two critical skills be your gifts to your patients as you work to establish a rapport that grows into a trust driven relationship that is critical to patient health going forward.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell
You are 💯 percent correct.We know our bodies and we know where it hurts. Thank you for publishing this.Looking forward to reading more of these facts these
ReplyDeleteWell done Carla, I just hope many members of the medical profession will read and take heed of your powerful points of view.
ReplyDeleteThank goodness you know your own body and do research before taking medications. I was prescribed A well-known cholesterol drug almost 13 years ago for three months (my cholesterol was just slightly elevated; I asked to be referred to a nutritionist, but was refused.). When my blood work was done, my CK was extremely high. After I suggested that it was possibly the statin drug, I was taken off it and after many tests with neuroligists, MRI’s and muscle biopsy, I was diagnosed with Myositis, a very rare disease in which my immune system attacks muscles in my body, not forgetting that the heart and lungs are muscles. My health was very good up to that point. I wish I would have said ‘NO’ to the drug.
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