Why patients have to be their own advocates

I am a 47-year-old female.  In December of 2010, I had surgery to remove a 2 inch atrial myxoma (a heart tumor) in my left atrium.  The costs for that were astronomical.  That is not what I am writing about.  I am writing about what happened in the months after my surgery and a cure that cost $9.19 if you don’t count all of the unnecessary doctor visits and procedures.

Shortly after my atrial myxoma  excision surgery I began experiencing symptoms similar to rheumatoid arthritis.  I visited my internist and he ordered lab work to see if I had this.  The lab work was negative but I continued to experience severe joint pain.

New symptoms emerged including severe headaches and some numbness.  More symptoms started to show up over time.  I had pericarditis, pleuritis, chostochondritis, atrial flutter and atrial fibrillation.  These symptoms had me back in the ER a few times which included having several electrocardioversions for the arrhythmias and an MRI and CAT scan for the headaches and numbness for suspected mini strokes.

I was sent to 2 different neurologists.  One said I was having migraines and the other said I was possibly hyperventilating. I also had follow up care with my cardiologist a few times and an electrophysiologist a few times.  They put me on a medication for arrhythmias and were considering ablation surgery for the arrhythmias. My cardiologist also recommended I go to a rheumatologist because a lot of my symptoms sounded like an autoimmune disease.  The rheumatologist’s tests for lupus were negative except I had high C-reactive protein levels. I had been Googling as the symptoms piled up to see if there could be some mystery diagnosis that the doctors were missing.  I stumbled on Dressler’s syndrome, aka postpericardiotomy syndrome.  All of the symptoms fit since I had recently had my heart surgery to remove the atrial myxoma.

Armed with my new information and a potential diagnosis, I went back to my electrophysiologist with my list of symptoms and told him what I suspected was happening.  He concurred with my diagnosis of Dressler’s syndrome.  He told me ablation surgery was not indicated for my condition. All I had to do was take 600mg of ibuprofen three times a day for 2 weeks.  The cost of my cure was $9.19 for a bottle of 150 ibuprofen tablets on sale at CVS.

What’s the moral of my story? You have to be your own advocate.

Angie Dresie is a patient.

costs_of_care_logo_smallThis post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American healthcare delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.

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