Sunday, December 27, 2009

The past gives seed material for the future

I have a son who has been sick enough all his life so that it seems doctors have given up on him. I haven't, and that really annoys the doctors no end. When I go in to see a specialist, he or she asks me the standard question: "What can I do for you?" And since the referring doctor usually does not inform the specialist about Erik's ailment, it is up to me to fill the doctor in telling him or her all I know about Erik.

I start at the beginning: "He was born premature; he weighed 3 lbs. 2 and one half ounce. At that point I get interrupted: "I don't need to know all that. Tell me what brought you here!"

I start again but at a more recent date, and I say all this very fast so I can get as much information into my sentences as possible: "In 1998 Erik had surgery on a Slipped Capital Femoral Epiphysis; the growth plate of the femur had slipped. This surgery left him in a wheelchair. If that wasn't bad enough he only weighed 34 lbs., and I wanted to know why. So Erik was referred to a gastro-enterologist to see if there was a malabsorption problem. After a biopsy of the small intestine, I think, the conclusion was drawn that Erik did not have celiac disease. I then kept asking for referrals to a kidney specialist..." Again I get interrupted. "I don't need to know all that," says the doctor. "Why do you want to delve so far back into the past?" He or she asks me impatiently: "Why are you here?" The doctor has not looked at my son."

The doctor apparently did not expect Erik to be a basket case. I sometimes even want to say that I am sorry to inflict such a sight on this mighty profession that believes in itself to cure the sick and only rarely misses a diagnosis. I want to shout: "Give me a diagnosis that Erik can live with. And I want it in writing." The diagnosis is kidney failure, please, write it down for me so that the next doctor Erik goes to doesn't have to guess. Erik has a record a foot high. The past and the future would be ample material for studies. But this seed material has become old and just not interesting enough any longer. Where do we go from here?

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