Has this ever happened to you?
It’s 10:00 pm. Your child with hemophilia fell earlier in the day and now he has awoken in tears and his ankle is swollen. You have no factor at home to infuse. You rush to the nearest hospital emergency department and sit in the waiting room… and wait, and wait, and wait. When your child is finally examined, the doctor says, “I’m not sure your son’s ankle is bleeding. I’ll have to run some tests.”
Or, does this scene sound familiar?
It’s the middle of the night. You have Type 1 von Willebrand disease and you are having a bad nose bleed. You are unable to control it at home and so you go to the emergency department. The waiting room is full and the triage nurse does not seem to think your nose bleed is serious. So you wait. You know that you need an injection of desmopressin (DDAVP). When you finally see the doctor, he/she prescribes packing and refuses to call the hematologist on call. The nose bleed continues.
Unfortunately, stories like these have occurred all too often and many people with bleeding disorders have experienced firsthand the frustrations and anxiety of accessing timely and appropriate care for themselves or their child in the emergency department. Navigating the emergency department, contains practical suggestions of things that can be done to prepare and make things go more smoothly for you or your child. Emergency department visits will be necessary from time to time, despite your best efforts to prevent injury. However, being prepared and well informed about your bleeding disorder, before ever stepping into the emergency department, can pave the way to a successful visit.