Wednesday, April 16, 2014
YOLO COUNTY NEWS
99 CENTS

Should you research your health on your own?

MarionFranckW

People say to me, “You put so much personal stuff in your columns. I could never do that.”

This surprises me because I leave so much out. I forbid myself whole topics, including anything that reveals intimate information about friends or family. (My husband says he begs to differ.) Out of a dozen meaty experiences, half will be on my “Do Not Call” list.

Recently the personal issue uppermost in my mind has been my health. Today I will try to say what I want to say without saying too much.

I’ve been dealing for over six months with a health concern that, while not life-threatening, is serious enough to warrant my persistent attention. Recently, I got great news, a reprieve from surgery, and a re-testing schedule I can handle.

When I got that news, worry drained out of my body like water through a sieve. I felt as if I were suddenly transported to the beach, warm, dry and comfortable. I ate well. Everything became a little bit tastier. The world got brighter. More fun.

In the days since, I’ve had time to reflect, and I’ve said repeatedly to myself, “Appreciate health when you have it.” But that’s hard to do.

Maybe at a minimum I can retain — and share in a column — what I learned about doing my own medical research.

Several weeks ago, I knew I had some decisions to make and I wanted to be as well-informed as possible. The Internet didn’t tell me what I wanted to know, so I traveled to a medical research library about an hour away where I knew a librarian could help me investigate.

In particular, I wanted to know how I would feel after surgery. If surgery might lead to life-altering physical changes, I wanted to know ahead of time.

The first thing I learned is that some ailments are hot and some are not. When a discovery is made, researchers stampede granting agencies like shoppers on Black Friday. Then they start researching and writing articles.

My symptom is newly discovered and not widely understood. The number of recent academic articles by researchers in Australia, China, Japan, Britain and the U.S. astounded me.

I stood there bemoaning my pile of reading matter when the librarian set me straight. “You’re lucky,” she said. “Sometimes people come here to research their disease and all they find is articles that are 25 years old or older. How useful is that?”

So I read and read and discovered, of course, that researchers disagreed with each other, another factor that keeps a topic hot. Which disagreements are important to a patient? Arguments over what to name the syndrome? No. Arguments about how it might progress in a patient? Yes.

I became a student of the research process. How many people did these physicians study? Why was one paper quoted all over the place when it involved only one unusual patient? Do important discoveries get made by studying one patient? Or are researchers more attracted to the unusual than to the commonplace, just like the rest of us?

In general, I respected their efforts. Most seemed meticulous about their methods. They tried to weed out errors. Some admitted they hadn’t come up with much new material. Long, detailed review articles that must have taken months and months to write provided well-researched recommendations on how to treat patients like me.

From a patient’s perspective, however, treatment recommendations stopped in an odd place. Researchers wrote about symptoms, diagnosis, surgery and statistical outcomes. They wrote about re-occurrences. They never wrote about how it would feel.

The main reason I was doing this research was to find out how it would feel.

How painful is the surgery? How long do I stay in the hospital? How long does it take to recover? No one answered my main question, “Could I end up with physical changes that impact the rest of my life?” I understand that no two patients will have the exact same outcome, but surely some generalizations can be made.

I also looked at materials that were “dumbed down,” written for patients, about “your trip to the hospital” or “what to expect after surgery.” Their tone was gentle and kind.

They covered short-term effects but they, too, were silent about the long term.

In the end, I learned that researching the medical literature yields information that is both useful and scary. Every paper has some portion that is incomprehensible to a non-physician. When I was done, what I needed more than anything was to talk.

I made appointments with two of my doctors and did just that. One of them gave me the good news I mentioned earlier, wiping surgery off my schedule. But if I had faced surgery, both would have been able to draw on their experience with other patients to tell me about outcomes, especially the small daily things that the medical journals don’t mention.

Even in our highly digitized, researched, medically sophisticated world, I find that experienced, practicing physicians provide a critical link between scientific research and the reality of a patient’s life. In time of worry, that’s what we need. That’s what I need.

— Marion Franck lives in Davis with her family. Reach her at marionf2@gmail.com

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