The Risk to Risk Ratio
A lot of people thought he was crazy — mad scientist crazy. Others heralded him as a hero and a genius. Some people wanted him dead. Others wanted to give him honors and ceremony. He often frequented lavish parties with world famous celebrities, and even sparked up a few love affairs. The paparazzi and the dregs of yellow journalism scandal mongering had a field day. Everything he said said or did was skewed by the press to further fuel the controversy, even when he met with Pope Paul VI to be personally congratulated for his professional accomplishments. This was the societal response to of one of the greatest advancements in life saving cardiac surgery.
Christiaan Barnard performed the very first human-to-human heart transplant at the Groote Schurz Hospital in Cape Town, South Africa on December 3rd, 1967. He also had rheumatoid arthritis. As Barnard shares in his autobiography: "I tried not to think about it, but it was there all the time, reminding me of its continuing progress by flashes of pain... at night the pain seemed worse... In the morning, my feet would be so enlarged I could hardly get into my shoes. Eventually it spread to my shoulders... Every act was made with pain."1 When Barnard took to the operating table to transplant a heart from a young woman, Denise Darvall, who was declared dead due to injuries to the brain, to the recipient, Louis Washkansky, a 54-year-old grocer who was dying of heart disease, he had swollen and stiff fingers. Tragically the disease would be crippling and force Barnard's early retirement in 1983.2
I was reading Christiaan Barnard's autobiography, One Life, while visiting my rheumatologist about a year ago. My doctor asked me about it, and the conversation we had transformed our doctor-patient relationship. In my previous visits, I was quiet, and didn't speak much. She did most of the talking, and I would fire off a few quick questions related to my symptoms and meds, and that would be it. She was always professionally courteous, but when I told her about Christiaan Barnard and the book, she paused, thought for a minute, and then began to talk enthusiastically.
As it turns out, Barnard wrote a few books for medical doctors, one of which centered on the ethics surrounding euthanasia. My doctor was required to read it in medical school. She recalled Barnard as thoughtful, and a brave physician for wading through the controversy he seemed to inspire with his every word. She told me about how she and her fellow students had some fierce debates over the topic, and that I was reminding her of that nostalgic past. I was in graduate school at the time, and recounted to her some of the fierce debates that reign in the world of psychology, and my personal doubts about some aspects of the field. It was a short but very enjoyable conversation.
Since that time, I have really come to get a kick out of my rheumatologist when I see her. She has a dark sense of humor, and so do I. But she is also very hopeful, though never out of proportion to the evidence. She will tell me hard truths while looking me in the eye, will tell me when data is insufficient to make a prediction, and will say the words "I don't know," if she is not certain on an answer. I appreciate that kind of frankness. It inspires my trust.
During a subsequent visit, I proposed to her one of my silly philosophical musings that I call "The Risk to Risk Ratio." I told her that the term "risk to benefit" was misleading, because it made the hard decisions sound better than they actually are. With RA, many of us are choosing between one risk and another risk. I can take medication that may reduce the risks of disease progression, but my risks for infections, malignancies, and other severe complications go up. I can choose not to treat my RA, but the risk of disease progression goes up and my pain is unbearable. If the medication I take controls my symptoms and slows the disease, there are unpleasant side effects that replace it like fatigue, headaches, and weight gain.
If I had money to invest in the stock market, the risk would come with the possibility of financial gain, and may put me ahead of where I started. But RA decisions are risk to risk in every direction, and never get me ahead. They at best prevent me from falling further behind.
My doctor immediately agreed with my idea. She thought it was spot on for descriptive and aesthetic purposes. But then she reminded me of the math I was leaving out. There is a statistical calculation for determining the efficacy of a treatment verses its risks, as well as a calculation for the relative risk of forgoing treatment. When the higher probability of a favorable outcome of treatment is weighed against the higher probability of a bad outcome of no treatment, benefit is derived.
I agree with her. However, for descriptive and aesthetic purposes, I'm going to keep saying "risk to risk" when people ask me about my treatment. I try to make it perfectly clear that the decision is hard, and that I'm not just haphazardly pulling the lever on the slot machine of my health every time I stick a needle in my leg. I'm taking calculated risks weighed against other calculated risks, because that is rheumatoid arthritis as I know it.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?