| this morning is pulmonary hypertension clinic and no one wants to go. except me.
number one, i'm kind of a sucker for orphaned causes. number two, i've got a couple of patients with pulmonary hypertension who are waiting (and waiting and waiting) to get into this clinic and i'm hoping to ingratiate myself. and number three, why not? i keep getting echo reports back with pulmonary hypertension on them and there's literally nowhere to go and nothing to do but wait in line for an appointment at the pulmonary hypertension clinic. maybe i'll learn enough to tide my patients over until they see the experts-- if i'm going to have to send my patients to someone, i like to put all their ducks in a row so when they get there they're ready to be fixed.
sitting in the middle of a flurry of specialty research nurses, writing upside down so we can see, giving a lecture that he has likely given twice a month for his entire professional life is one of the few experts on this rare, rare disease. the patients trickle in one by one and we huddle in the doctors' room, watching diagrams appear on scratch paper and trying to be astute.
pulmonary hypertension is a strange category, lumping people together who look strange in the same waiting room-- tiny, frail young women dragging two oxygen tanks sit next to puffy old men with bags of medicine. fresh off our physiology lecture, we crowd ten deep into the tiny room and take turns with our stethoscopes, peering intently at necks that pulse furiously, terribly. more than anything it's the pulses that give it away.
there's the tango with the drug companies, too. study after study funds this place, all held together by the drug companies. medicines for this disease start at tens of thousands of dollars a year and go up, up, up from there. the drug companies pay for the nurses and spring for the medicines-- for life, actually-- for the study participants. the clinic survives on their willingness to enter the trials, to go through the exercise tests and the catheterizations (which they kind of need anyway but, well, might not need so many of if it weren't for the study), on their willingness to trek here from hundreds of miles away to see the expert.
and it's a parade of nice ladies with horrible, incurable diseases. one had a really elaborate manicure she got in celebration for being able to keep one of her fingers from falling off. (i told you, these are bad diseases.) another lives her whole life on the second floor of her mother's house. (stairs are kind of a huge challenge. they'd like to find a place on the first floor, but haven't found one yet.) the men i'm used to, frankly, with their tired eyes and their boggy hearts and their arm-long list of medicines. but these women, these beautiful, tiny women, each like baby birds with the too bright eyes of people close to death and the blood heaving and struggling in their throats-- |
