It would be nice if I could get sick when it’s most convenient for my doctors….
On May 24th I had my second grand mal seizure this year….I was officially diagnosed with epilepsy. My neurologist prescribed Dilantin, an AED with a long history, generally well tolerated. I, however, didn’t tolerate it very well. I had what was obviously a severe allergic reaction to the medication, bright red from head to toe and itchy. I called my neurologist to report the reaction and found out that he had gone on vacation that day….and did not have another doctor covering for him. “Could you call your primary care physician?” the receptionist asked. Sigh…..”Yes”. My primary care physician was off that day and I found out that she would be out of the office the following day as well. “Would you like to talk to one of the other doctors in our clinic?” Sigh….”Sure”. I explained my situation and waited for a return call. “Dr. Kane says that a rash and itchiness are not recognized as a reaction to Dilantin so please stay on the medication and follow up with you neurologist”. You’ve got to be kidding! Has Dr. Kane googled “allergic reactions to Dilantin”? I’m not supposed to just stop taking my anti-seizure medication and the current situation clearly isn’t acceptable either. I called my neurologist’s office again. His medical assistant didn’t have his cell phone number but she said that when his physician’s assistant got back from lunch, she would see if he could get in touch with Dr. Heide. Eventually we did get in touch with Dr. Heide who told me to stop taking the Dilantin immediately and prescribed a new medication.
Today I called my gastroenterologist to schedule another esophagus stretching. I’m having difficulty with both swallowing and burping so it’s time to have the procedure done again. Since it was lunch time, I left a message with his nurse, explaining the situation and asking her to call. “The only slot that I have available…from now until SEPTEMBER….is next Thursday at 2:30”. Next Thursday is the only day, between now and September that I am not available. I’m supposed to be setting up the WWHA Hound Show all day that day, directing the efforts of all the volunteers. But I also need to swallow. “Can he refer me to someone else?” I asked. “No, everyone is in the same boat” Bev said. “Oh, for Pete’s sake!” I thought. “By the way” she said, “your referral has expired, could you call your primary care doctor and have her send over a new one?”. Sure. So I call Dr. Samavedi’s office and get the following message “If you’ve called between the hours of 1 and 2, we’re at lunch. Please call back at another time”. Great. So when I call back at 2, I get the following message…”If you’ve called between 2 and 3, we’re having a staff meeting so please call back at another time”. You’ve got to be kidding! I am now incredibly vexed with the situation BUT I did manage to get an appointment for a consultation with my gastroenterologist today…and….after venting to his nurse, I now have an appointment first thing Monday morning to have my esophagus stretched. We talked about everything that has been going on with my digestive system (since lately I’ve only seen him just prior to “here’s your Versed” and not at all after procedures). We talked about epilepsy, Keppra, dumping syndrome, swallowing, burping, weight loss….and apparently Google and I have done a pretty good job assessing the situation. I need to eat appropriately to avoid dumping (no sugar or lactose), eat frequent small meals to get as many calories as possible and return from time to time for esophagus stretching….ie. I’m already doing everything that I can….