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| Getting carried away | |
| --Barbara Seaman |
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| In all the
emergency stories we’ve heard from people with CPT deficiency, there are two common refrains. One is how embarrassing it is to find yourself being carried on a tarp down the side of a mountain or hauled off the playing field by teammates. The other is how hard it can be to get help for a rare disorder in the average hospital emergency room. Case in point: One evening last May, Robin called her physician and announced, “I’m going to the emergency room.” She’d had a sore throat and fever of 101 for two days and had started antibiotics that morning to treat strep throat. “When I start getting the achy muscles and my urine turns brown, then I’m on my way,” she says. “I wasn’t going to wait for my doctor to tell me to drink Gatorade because at that point, you can’t get it in fast enough.” Once in ER, Robin discovered that her doctor had ordered a saline IV--not glucose--3 liters to be given in one hour. Then she could go home. Robin was too weak to protest the lack of glucose or to reach up and restart the balky IV machine that kept beeping. To add to her distress, a staff doctor mistakenly announced that her CK (creatine kinase) was 112,000 and added that while he knew nothing about her disease, he was concerned about acute renal failure. Fortunately, the doctor rechecked the numbers. Her CK was 12,000, not 112,000. “I felt like I’d been healed,” recalls Robin. At 2 a.m. when the IV had finally dripped the last drop, Robin opted to go home. As instructed, she returned at 7 a.m. so the hospital lab could recheck her CK levels--stat. But once again, frustration set in as Robin waited five hours for the results. Turns out her CK had nearly doubled. It was 22,000. Nevertheless, the doctor she saw--a different person--thought she looked better and sent her home without further IV treatment. The story has a happy ending. Robin recovered uneventfully, as they say in the medical journals. She also visited her own doctor a couple of days later and took a copy of our patient story, Anatomy of an Attack. “Here’s an emergency protocol,” she said. “This is what I want.” Now if Robin ever needs emergency care again, she will be admitted directly to the floor and given adequate glucose and hydration. 
To read other stories about CPT deficiency in the emergency room,
visit Seeing red, Anatomy
of an attack, Running
in the family and The
great Alaska kick-start. For tips on
getting adequate emergency care for rare disorders, visit Been
there, done that. |
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