I AM A PATIENT
At the health club, I rode the stationary bicycle hard that morning as the Beatles album “1” blared through my Walkman. The page on the Stephen King novel blurred during “Hey Jude.” I slowed down, first shutting my left eye then shutting my right. Weird. A dense black lattice covered the vision of my left eye. I could not see out of my left eye! Must be a retinal detachment, I thought, not even considering a vascular catastrophe. I phoned the on call ophthalmologist and asked him to meet me at urgent care.
My colleague Jim Brownfield found an elevated intra-ocular pressure (IOP) and a faintly abnormal optic nerve and suggested a tentative diagnosis of anterior retinal artery thrombosis or ischemic optic neuritis (my study of the literature the next few days about the prognosis of ischemic optic neuritis scared me). Later in the day saw I Scott Glickstein, a good friend and colleague. Scott and Jim, thank you for your calm and empathy. Your caring and care meant a lot to me during that first day. I was scared; my world changed in an instant as I shifted from my long term illusion of physical invincibility to being frightened and vulnerable. Was this the sign of a serious systemic illness? Would I lose the vision in my now lone good eye and stumble through the remainder of my life completely blind? Would I die?
As I waited impatiently for the results of a myriad of tests, I started high dose prednisone (treatment of choice for idiopathic disease) along with diamox and multiple eye drops for elevated IOP. During the next few days, I went to urgent care and ENT because, in retrospect, I was scared. Did my 2 weeks of hoarseness and sudden blindness signify an underlying Wegeners arteritis? Did my long history of Raynaud’s phenomenon while biking on cold days represent cryoglobulinemia?
Missed warning signs
Over the ensuing several days the picture became clearer, but my vision did not. I suffered the usual false positive goose chase whenever many tests are ordered (in this case, a mildly positive lupus anticoagulant that worried me for a week until we established with other tests that it was a false positive). Soon everything pointed to central retinal vein thrombosis associated with acute angle glaucoma and now open angle. I had Kirby Puckett syndrome. As my IOP fluctuated above 40, causing eye pain and nausea, I realized that the intermittent orbital pain and nausea over the past few weeks represented acute glaucoma and not migraine headaches. I had blown off warning symptoms that could have prevented the blindness. Over time, I would need to forgive myself.
Historically, I was Dr. Evidence Based Medicine. I was chair of the ICSI board after all, our bastion of evidence-based medicine. I knew that the evidence showed that nothing worked to improve the prognosis of central retinal vein occlusion. Suddenly, I did not care about evidence. I wanted to be rescued. I wanted “rescue medicine.” I underwent an optic sheath neurotomy. I did not improve, but at least I did not lose my entire globe like Kirby Puckett did as a complication of ineffective, non-evidence based rescue medicine.
Month 2. I received my first refills of new medications- three different eye drops to control glaucoma. I remember hurling the bag against the wall screaming expletives in response to my situation until I collapsed in a corner sobbing. For weeks, my grief washed over me in waves ranging from rage to sadness to self pity.
7 years later. My grief is long gone. I use my functionally blind left eye as an advantage. My lycra clad biking buddies ride cool looking bicycles. Rear view mirrors are nerdy and taboo on cool bikes. I ride a cool bike with them, but because of my visual loss, I don’t care about looking like a biking nerd with a rear view mirror. As the only rider with a rear view mirror, I rule—I can see vehicles approaching from behind as well as a biking buddy trying to sneakily overtake me and I accelerate to leave him in the dust.
I want to thank my colleagues who saw me professionally during that time and treated me with compassion, empathy, professionalism and clinical excellence: Jim Brownfield, Mike Lieppman, Kirk Morgan, Scott Glickstein, Sarah Evert, Tony Woolley, Sandra Skovlund and J.P Carlson.
Changed how I view patients
How did my sudden visual loss influence my views about our profession? Today as a patient on five medications for high blood pressure, hyperlipidemia and glaucoma, I see myself as healthy and with no disabilities despite the nerdy mirror on my bike. I don’t really want to see physicians to refill my medications. You will hear me talk about patient self-management and long for the day when remote technology will enable me and other patients with chronic disease to report blood pressure readings, cholesterol levels and intra-ocular pressures without taking time from our busy schedules to have these checked for refills. Yet, I understand from my loss, the more health care changes the more certain things must remain the same. When I felt scared and vulnerable, I needed relationships with compassionate physicians. I feel blessed that my physicians empathized with my loss, fear and grief as they dispassionately helped me with decision-making.
As an Internist caring for elderly individuals with multiple chronic diseases, I understood the role of grief in accepting the limitations of aging and of chronic disease. Yet how often was I grumpy and impatient with “trivial” complaints stemming from fear and loss? How often did I support my patients through their grieving process? On difficult days, did I offer the patient in front of me the type of consideration I would want for myself or my family?
When I tap into my experiences as a patient, our Park Nicollet vision comes alive: “everyone caring, every day, creating with the individuals we serve, optimal health and greater value.”
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