I wanted my first blog installment to tell the story of one of the medical disasters (there are many) I’ve experienced over the years. Have you ever wondered as I have if you just have bad luck with doctors or is there something about you that makes doctors want to treat you poorly?
Blog #1 is the story of a knee scope and a complication that was the beginning of a series of health issues. In two years time I suffered a knee injury, stress fracture of femur, hip arthritis, gallbladder surgery, complete hysterectomy, surgical menopause, a stroke, pneumonia, chronic respiratory failure and dependence on oxygen.
Returning to the beginning in 2012, my GPS device of life, that had steered me on a fairly smooth path for a number of years, hit a snag or lost its satellite. The GPS went off course, sending me the wrong way down a one way street into chronic illness, frustration, dependency and anger.
Five years later, I’ve successfully found my way along the alternate road map I’ve been given, and doing well enough on the route, I hope, to share with you some of my secrets to survival.
In 2012 at the age of fifty I worked fifty plus hours per week (and more like eighty when I was on call) in my solo family practice, cared for inpatients at the local hospital, visited my patients in the local nursing homes, cooked supper most nights, did laundry, some cleaning, and grocery shopping without missing one of my daughter’s volleyball games.
I must confess I lived in a world of deluded denial carrying on as if I were perfectly healthy. I figured not mentioning my lupus, miscarriages, and joint pain would mean they couldn’t interfere with any activities.
I still staunchly believed back then in the dream of motherhood: you can have it all, you can do it all. I was bound and determined not to let a moment slip by.
In addition to motherhood stoicism, I also had a well honed superhero complex perfected in medical school and residency that spoke loudly, “Doctors don’t get sick,” and whispered, “but if they do, they stay silent and work right through it.”
As bothersome lupus symptoms arose, like knee and hip pain, back pain, or ankle and foot pain, I self medicated with acetaminophen, ibuprofen or acetylsalicylic acid like other mothers, like other doctors. I’m sure you can relate.
Besides being incredibly busy and definitely deluded, another issue prevented a clear view of the health precipice on which I stood. Many times over the years, when going from the role of doctor colleague to female patient, I was disappointed in the treatment I received.
Leaving the specifics to another time, many physicians from whom I sought care found nothing wrong in my blood work or X-rays to medically explain my symptoms. Even with a compassionate physician, the lack of definitive abnormalities left both of us frustrated.
Other, less caring doctors, tended to minimize the significance of my complaints, implying either that I had exaggerated the intensity of the symptom or conjured its presence from a worry stricken mind.
So feeling dismissed and unheard, like many other women, I moved forward with life and work the best way I knew, until my GPS suddenly failed me.
One afternoon in Tennessee’s most beautiful month, with rustling green leaves and blooming May flowers not yet withered by heat, I twisted on a swivel stool to face my patient on the examining table. It was a very simple, subtle movement.
Inexplicable searing pain shot up through the inside of my knee, escalating to unbearable pain over the next few days, leaving me to hobble on crutches and cry every night.
The orthopedic doctor offered a knee brace and ordered X-rays and MRIs. As I should have anticipated, the images showed nothing to explain the intensity my pain.
At the hospital, a radiologist half my age, a Doogie Howser doppelganger, showed me the normal knee MRI and looked astonished at my wheel chair mode of transportation.
The presumed diagnosis was a torn medial meniscus so arthroscopy was recommended (a small scope and camera inserted into the knee joint under anesthesia to identify the problem inside a joint and repair it).
I woke up after the arthroscopy with my right leg in an ice pack resting on a pillow, expecting to feel some relief. I was completely unprepared for the intense pain exploding through my right knee, right femur and raging upwards through every nerve ending in my spinal canal.
The agony was comparable to peak contractions of labor (which I do remember) but was worse in its relentless ferocity, never offering the solace of a one minute break between blinding episodes.
In that moment awaking from anesthesia I had no idea my life would be arrested for six months, put on hold with all consuming pain. The arthroscopy had gone awry, a surgical procedure had been performed inside my knee without my knowledge or informed consent which led to an unrecognized complication. This complication resulted months of misery, dependence and post traumatic stress.
It turns out that I never had a torn meniscus in the first place. I found out much, much too late that a small hunk of cartilage and bone had broken off in my knee and the surgeon had drilled into the raw area with a metal drill bit causing a stress fracture in my right femur.
Three days after the arthroscopy I returned to work as he had instructed, unaware of the drilling in the bone or the stress fracture. I experienced excruciating agony, trying to hobble on crutches and bearing weight on the right leg “as tolerated.”
I resumed my full schedule at the office and hospital, crying between each patient appointment and sobbing at night when the mild analgesic he had prescribed wasn’t touching the pain. It was six months before I could walk without crutches or a cane and my left knee and right hip suffered permanent injury as well.
Several orthopedists treated me during that time. Not once was my pain adequately controlled or the stress fracture detected.
I walked and worked on a fractured femur for months, in shock that a surgical procedure could be performed without informed consent. If such an egregious violation of medical protocol could happen to me, what might befall an ordinary, non-medically-savvy patient.
The inspiration for this blog arose from the idea of helping patients protect themselves and offering words of wisdom for coping when things do go wrong. But my own process of dealing with this particular situation has taken a few years. First I aimed to heal from the physical trauma my joints had experienced, then to recover from the emotional trauma of being betrayed by a fellow physician.
I had just begun to get ‘back on my feet,’ literally and figuratively, in 2013 when my GPS of life threw me another curve. It swerved me towards something I never dreamt of, a stroke. Unfortunately, the stroke also was misdiagnosed and mishandled and deserves its own platform another time.
A few months after the stroke, in late 2013, overwhelmed by continuing fatigue, I developed a fever, cough, chest pain and shortness of breath. An ordinary case of pneumonia would have been welcomed, but instead I was diagnosed with a rare bacterial infection, Mycobacterium Avium and was sick for months.
Then while being reassured that my chest X-rays and chest CT scans were all showing signs that the mycobacterial infection improving, I began to feel more weak, exhausted and short of breath.
Finally one morning in my office, May 2014, I managed to diagnose myself by doing a test showing that the oxygen levels in my blood were dangerously low. The new diagnosis, hypoxemia (low oxygen levels in the blood) led to a massive detour on the GPS map, leaving me unable to practice medicine, having to close my office, desperately missing my beloved patients and staff, and feeling helpless and overwhelmed.
But since then, through the twists and turns and disappointments I have used my medical background and research skills, along with some common sense, writing therapy, family support, diet changes and modest exercise to improve my health and outlook. Details focussing on specific methods will follow later on.
I must admit though, in the interest of full disclosure and naked honesty, none of it has been easy. Many times I struggled and whined and felt sorry for myself curled up in bed but gradually I learned to find contentment and peace beyond the agony, anger, betrayal and frustration. I hope you can too.