Friday, October 12, 2012

PFAM Blog Carnival: Mistakes of the Medicinal Kind

Selena from Oh My Aches and Pains is in charge of the October Patients for a Moment blog carnival. The theme is "medical mistakes" and this is her prompt:

"We're all human.  (Even the zombies and vampires among us where once human...)
We all make mistakes...including your doctor. 
Since those of us with chronic illness use the health care system the most, I'm sure you all have a story (or two) to tell about the misteps, mishaps and misadventures that have happened to you in the course of getting medical care."

 The only mistakes that come to mind are of the medicinal variety They weren't willful, of course, just unfortunate. 
In 1991, I was prescribed an antiarrhythmia drug called procainamide. It'd been on the market for forty years, so it was reasonable to assume that it was safe to give me when I was burdened with a myriad of arrhythmia episodes. This was my second medication ever, as I had been on Lanoxin (aka digoxin aka digitalis aka foxglove) since I was an infant. So its initial incorporation to my daily routine was not that catastrophic of an adjustment.

It worked. It was really potent with my heart and my monthly run to the ER of the Children's Hospital of Philadelphia became a seemingly thing of the past. For a short while, anyway.

You see, procainamide has a virtual cornucopia of side-effects and one by one they descended upon me like locusts on an unsuspecting farm.

The rarest symptom decided to show up to the party first, plaguing me with bouts of extreme confusion, irrational thoughts and hallucinations - both waking and nightmares. Now, if you had known me as a child, only the confusion part would be leading you to think something was amiss, as it went down with my parents. I'm a crabby person in nature, so any irritability my parents chocked up to school stress (I was bullied) or lack of sleep, which was in fact being disturbed due to vivid nightmares. Assuming it was television infecting my already obnoxiously overactive imagination, my parents cracked down on my tv viewing habits. Indiana Jones and the Temple of Doom was in particular banned. No more monkey brains for meeeeeeeeeeeeee!

It wasn't until the confusion set in and my mother witnessed me leaving the house a half hour early before my bus, walking 15 feet down the sidewalk before becoming lost, confused and thoroughly spaced out that mom got a clue something wasn't all right with her daughter. 
She called me back to the house: "Rachael, where are you going?"
and I remember running back, so happy my mom had found me (remember I am standing in front of my next door neighbor's house - my house is well within view!) "Oh, mom, I was so lost! I forgot where I was and where I was going!"

Finally, physical symptoms manifested, beginning with myalgia - the shrieking muscular pain that kept me in the nurse's office for hours on end, as it was too difficult for me to shuffle from one class to the next.
Then came full-blown drug-induced lupus erythematosus, with joint pain to match the muscles that made me paranoid I had early onset arthritis, the disease that afflicted my grandfather for the majority of his life. Can you imagine a 9 year old sobbing hysterically in a school nurse's office, frightened she is going to die from the unfathomable pain in her joints? That was me, that actually occurred and I remember it plain as yesterday.

At this point my cardiologist sprung into action, hospitalizing me for 9 days to remove procainamide and watch for its ugly symptoms to recede, which they did gradually over time, leaving scarred memories more than any physical impressions.

I now pay attention to the "extremely rare side effects" portion of prescription drug labels. Experience has made me wary, with a profound empathy to the lupus community as I had a taste of what their day to day can feel like. And let me tell you, honey, it ain't chocolate with sprinkles!

My only post script to this is to recount an incident that took place about eight years later, when I was forced to see a terrible doctor who placed me on Procainamide against my wishes. I wrote about that over at The Ghost of Douchebags Past.

Another medicinal mistake was the atenolol debacle...but I have not drank enough alcohol to share that story publicly. Another time, my love muffins, another time.

1 comment:

  1. Oh you poor little girl! Truth is stranger than fiction...