From the Archives: Fall 2008 issue of Lupus Now
The 411 for a 911: A trip to the ER can be less stressful if you plan for it now.
by Martha J. Frase
In March 2008, Nancy Huaman had unexplained fevers every day for more than a week. Newly diagnosed with lupus, the 16-year-old from Odenton, MD, didn't suspect this was tied to her disease. Then came a day of severe stomach pain, headaches, and nausea that finally sent Nancy and her family to the emergency room.
"When I got to the ER, I told [the medical team] I had lupus, but I couldn't really explain myself when they started asking a lot of questions about it," says Nancy. "They wanted to know what meds I was taking, and how much, and I couldn't tell them. It just slowed everything down."
During a medical emergency, emotions run high, making it difficult to think or communicate clearly. Nancy's family never wanted to experience that chaos again, so now there is a folder at home containing all the vital information about her lupus. "I can just grab it and go," Nancy says.
Nancy's rheumatologist, Donald Thomas Jr., M.D., at Arthritis and Pain Associates of Prince George's County in Greenbelt, MD, says that having all the information related to your lupus ready to hand over to emergency room staff when you arrive can simplify and speed up your treatment.
"Put together a well-organized folder or binder, or create an electronic file on CD-ROM or flash drive, and make sure that at least one other person knows where it is and can access it in an emergency," he says.
Your file should include:
- Information about your lupus, such as specific symptoms and any organ involvement or related complications.
- Concise medical history, including diagnoses, hospitalizations, and surgeries, with dates.
- A list of every medication you are taking, both regularly and as needed, including dosages and reasons they were prescribed. Be sure to include over-the-counter products you take regularly.
- Drug allergies and your reactions.
- Names and contact information for all your current physicians and at least two family members or friends.
Thomas also suggests that those taking steroids regularly wear a medic alert bracelet. "It can be dangerous to miss a dose, so hospital staff need to know you are taking a steroid medication and how much, in case you are unable to communicate."
Is This an Emergency?
Like Nancy and her family, those relatively new to lupus aren't always aware of symptoms that might mean a medical emergency. Because lupus affects each person differently, involving different organs and organ systems, "It's important to understand how your own lupus is likely to act so that you'll be aware of an emergent situation," Thomas advises. "If you are not sure of the symptoms of your particular type of lupus, ask your rheumatologist."
For example, Thomas says, "Fever is a warning sign of a flare, but it could also mean an infection." Infections can occur anywhere in the body, he cautions. Be alert for other signs of infection besides fever, such as a cough with green or yellow sputum (phlegm), skin that is hot and red, or symptoms of a urinary tract infection -- painful, frequent urination and pain on your sides.
You should always take chest pain seriously, as it could be an indication of a heart attack. The signs: chest discomfort (pressure, squeezing, fullness, or pain in the center of the chest); pain in one or both arms, back, neck, jaw, or stomach; shortness of breath, with or without chest discomfort; cold sweat; nausea or vomiting; or lightheadedness.
Inflammation of the lining surrounding the heart (pericarditis) can also cause chest pain, but in this case the pain may change when you shift your body position or may go away when you bend forward.
Pain or swelling in the calf muscles -- especially after a long plane or car trip -- could mean that a blood clot has formed in one of the leg veins, while being short of breath could signify that a blood clot has entered the lung. The possibility of blood clots forming is a concern for anyone with lupus who has antiphospholipid antibodies in their blood.
Any sudden onset of neurological effects could indicate a stroke -- a blood clot in the brain -- so be alert for numbness or weakness in the face, arm, or leg, especially on one side of the body; confusion or trouble speaking or understanding; vision loss; dizziness or loss of balance; or severe headache with no known cause.
If you suspect a heart attack or stroke, head to the ER, says Thomas. "But for most other symptoms, try contacting your rheumatologist or primary care physician first to see if they recommend an ER visit."
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