I recently saw the Big Deal Lupus Doctor in town. My Regular Rheumatologist referred me as my flare up this summer was particularly stubborn and not responding to the course of treatment I was on.
The current plan involves infusion therapy and Imuran. The jury is still out on whether or not I’m clinically improving. Regardless, I don’t feel well. I’ve been running a fever for two days. My hair continues to fall out. I’m getting hives on my face and a rash (looking a lot like the one I just had) is beginning to appear on my legs. At this point I’m concerned enough to call Regular Doctor to discuss these changes. We spoke on the phone and now I’m frustrated and disappointed with how the conversation went.
First, I had to leave a message, which is standard protocol, especially in a large practice with 7 physicians. I tell the operator I’m having some symptoms and wish to discuss this with my doctor.
Then, I get a call back from the doctor’s Snotty Bridge Troll. She tells me to call the Big Shot Doctor because I’m under his care now and he needs to know if I’m having problems. I tell the Troll that Regular Doctor wrote the prescription for Imuran, ordered the infusions and has been following me for two years. I’d appreciate a call back when it’s convenient.
About 20 minutes later Regular Doctor calls and listens to what I have to say. She tells me that my symptoms could be anything … lupus, medication, who knows what … and I need to call Big Shot Doctor. And even though she prescribed the Imuran and IVIG, she’s deferring to BSD now when it comes to treating me.
Did I just get dumped?
Lupus has been called the Great Imitator with good reason. Hives, fever, hair loss, anemia, rash, lethargy … these are warning signs for people who are immunosuppressed and have lupus. What kind of doctor tells a worried patient to call somebody else?
I work for a very busy doctor. In fact, I’ve been managing his medical practice for 16 years. We see a lot of very sick people who sometimes need a little TLC. When they call us for help we take a few minutes to listen and find the very best way to meet their needs. If a patient must see another specialist or surgeon, we set up that appointment for them. We make sure their insurance will cover their laboratory or radiology studies. Our doctor basically “quarterbacks” their treatment to insure continuity of care. If it’s in the best interest of our patient to segue from our practice to another, more specialized physician, our doctor discusses this with them with sensitivity and honesty. Nobody needs to remind us that sick patients often have difficulty hearing bad news, getting their prescriptions filled, arranging for transportation, and understanding their medical bills. We’re there to help them get through the tough times.
I’m going to ask the Big Shot Doctor to be my primary rheumatologist. If he can’t, then I’ll find another doctor. It’s hard enough to deal with lupus when you’re not feeling well. It’s worse when the doctor and the medical practice you’re working with appears indifferent when you ask for their help.
Shame on them.
10/9/08 Here’s an update to this post:
I called the BSD’s office and left a message. The BSD’s rheumatology fellow, Dr. O, called me right back and was so very kind and helpful.
Me: My rheumatologist told me to call you if I’m having problems. Do you remember me? (snif, snif)
Dr. O: Of course I do! You’re not feeling well? How can I help?
Me: (I tell her my tale of woe.) What do you suggest?
Dr. O: First, I want you to know that we will be more than happy treat you here. Let’s lower your Imuran dose by 50 mg and see if that helps slow down or stop your hair loss. I’d like to run some blood tests also. I’ll call you back with those results ASAP and we’ll talk about what the next step will be.
Me: Thank you so much! I’m relieved to know there’s a plan on board.
Dr. O: Call me any time you have a question or a concern. Just leave me a voicemail!
Whew! A little compassion can make all the difference!