Things Go Wrong: Reasons Why I Check and Double Check Tests Results and Pill Bottles
The amount of maintenance we, the chronically ill, must perform on our medical care is more than most people could begin to understand.
It’s hard enough for us to process. We attend medical appointments, pick up prescriptions, show up for tests, and pay medical bills. Maintenance, the clueless multitudes ask? Seems to be a well-oiled machine. You show up and then you pay for services rendered, right?
Wrong. Crap happens.
Room for mistakes
Show me a chain pharmacy and I’ll show you a collection of over-worked, sometimes inexperienced and stressed-out employees who can’t count past 96.
Show me a receptacle for a urine catch and I’ll show you ten different ways to contaminate the sample.
Show me a medical bill for a urinalysis and a comprehensive metabolic panel that should cost the patient nothing and I’ll show you a balance due for a thousand dollars because the procedures were miscoded.
Show me a neurologist who discusses the results of an MRI, and I’ll show you a radiology report that details other findings that the doctor failed to mention. Those reports include non-MS related evidence that might be important to follow up such as an enlarged thyroid, gallstones, tumors, and many other possibilities. It’s why I always request my own copy of the radiology reports.
Checking and double checking
To the clinically naïve, it sounds like a gross exaggeration when put into words, the embittered mutterings of a perpetual patient, worn down by pain, interview, drug side effects, and self-pity. What people on the outside don’t realize is that chronic care works best when all the pieces are in place — and the pieces are seldom all in place. It takes a practiced eye to spot things, and after the chronically ill patient has been burned a few times, it is in her best interest to keep that critical eye peeled with every prescription, test, and appointment. Getting burned also lights a fire under her to anticipate the possible problems, thereby avoiding a hot foot in the future. The burn metaphor is an apt one for those with MS, as burning pain is a popular item on the symptom menu. But I’d rather feel the burn in my flesh than in my pocketbook, or worse. So I check and then double check.
The latest double check has to do with my prednisone taper. I do steroids the old-fashioned way, and that is one tricky little math puzzle for a number of our well-meaning fellow citizens. I take pills, and that means my doctor has to first tabulate how many pills I’ll need to begin a titrated dosing schedule that steps down by 10 mg every three days until the pills are gone and the dose trails off over a few more days after that. I start at 80 mg for three days, and it takes three weeks to safely finish. So let’s say my doc does the math right. The second part is that the pharmacy has to put the same number of pills in my prescription bottle.
The other day I dumped out the remaining pills from the bottle, divided them up into the remaining doses, and calculated that I was short by 17 pills. What I had left would cut me off after the first day of the 30 mg dose. The bottle said 96 pills, and it probably did have when I first got it. The problem is, I calculated needing 110 pills to properly complete the taper. I called the nurse. She called the pharmacy. The pharmacy then called me. They admitted shorting me by 12 pills and promised to make it up to me.
“Seventeen pills,” I calmly corrected her, “Twelve pills will only get me through the last day of the 20 mg doses.” She took my word for it and changed it to 17.
My responsibility to self-advocate
I wasn’t mad. In fact, I’ve never been in a more accepting place with all of this. When I say it is my responsibility to self-advocate, this is exactly what that means. It’s my health, and I want to get it right as often as I can. The medical community needs my help to do that. It ain’t perfect, but it’s all we’ve got.
Does anyone else in your family have MS?