Every year I anticipate with dread what follows Valentine’s Day in February – my yearly liver clinic appointment.
After twenty years, I still get sick to my stomach when I walk in the transplant clinic waiting room. As if I am Cinderella and this year midnight has arrived, transforming me back into the very ill person I once was. When I go there, I watch the people in the waiting room; some jubilant transplant recipients, others still waiting for their miracle.
Even though I’m not that sick anymore, I still feel the same sense of vulnerability creep up upon me when I’m in the clinic. I know my life was once in a doctor’s hands and I am acutely aware organ rejection can put me back there any time. I hate feeling vulnerable. I hate it when I have known the doctor for years, and I hate it even more when I’ve never met the doctor before in my life.
This year, the latter situation applied. Last February my doctor of roughly seven years told me he was moving to the States. Although he is the second liver doctor I’ve lost to the States, I wasn’t that bothered because I didn’t like him in the first place. Still, I was wary all year long, wondering about the next doctor I was going to get.
When it comes to dealing with doctors, I have a wealth of experience. The doctors I respect and heed are the ones who take the time to really listen to me and my opinions about my care. Such doctors are also willing to explain to me logically why I need a certain drug or test so I can understand and decide for myself.
Other doctors, however, seem to have a God complex. These doctors believe they know best when it comes to any treatment and have this air of ego and knowledge about them intended to let me know my lowly place in the whole scheme of things. And for some reason, I seem to encounter most of these God complex doctors in liver transplant clinic.
I’ve speculated as to why this is over the years, and one theory I’ve come up with is becoming a skilled transplant surgeon takes a lot of dedication and education, and garners such great prestige for the doctor once achieved, that the doctor forgets they are still human and how to interact with other mere mortals.
When I met my heart doctor however, that theory took a beating. She is a cardiologist and a heart transplant surgeon, but still manages not to have an ego the size of Canada and to treat me like a person with valuable opinions. Any new theory may therefore include considerations for gender.
Unfortunately, even though I have so much experience, dealing with the God complex doctors doesn’t seem to get any easier. It’s gotten to the point where I approach every new doctor with skepticism, wary of revealing my opinions until I can figure out whether or not I will be listened to.
After my last liver doctor however, I have had enough. Years of not being listened to when it came to my opinion of my treatment have taken their toll, not to mention the fact that I am quite a bit older now and more confident in what my experience has taught me.
I decided getting a new doctor was the opportunity I needed to discuss my opinions about my treatment in an effort to change things. Thus, during my appointment, I worked my way slowly up through the chain of command. (By slowly I mean my appointment was at 9:15 am, but I didn`t get out of the clinic until 12 pm.)
First I told the nurse-practitioner I wanted to discuss my treatment options. Then the fellow (junior doctor) came in to talk about my medical history and problems I`ve been having. Then after that I got a real doctor who didn`t understand why I wanted to talk about treatment options in the first place but was disturbed enough by my persistence to call in the head doctor.
All of the people I encountered were doctors I had never met before, who didn`t know me or my history, but somehow still believed I had nothing to offer in terms of discussing alternative treatment options.
The head doctor, however, was a real piece of work. Every logical reason I had for wanting to change my treatment was met with a fear response, not logic in turn. In his opinion, changing my treatment would be risking my graft and my life. Did I want to kill my liver and risk my life?
Don’t get me wrong, I know my knowledge is limited when it comes to medicine and that sometimes I need to defer to a doctor’s judgement. But I also know when a doctor is presenting me with a faulty argument in an effort scare me into silence. In the past it has worked. This time, when I realised the doctor was trying to silence me through the use of fear, it simply made me angry and more stubborn.
Which perhaps explains how I ended up arguing myself into a liver biopsy. Instead of backing down, I used my anger to keep fighting and the head doctor conceded by agreeing to the liver biopsy, at least as the next step in our discussion.
After the appointment was over, I felt like I had been through a battle. I wondered if I had done any good by expressing my opinions and challenging the doctors. I couldn’t believe I had argued myself into another liver biopsy, a diagnostic test I’ve hated since I was a child.
It isn’t a complete victory, more like I’ve won a battle and perhaps begun a war, but in the meantime I’m taking pride in the courage it took for me to express my opinion and open up the discussion for change.