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Being Your Own Advocate


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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 which were astronomical, but 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 confirm a diagnosis. 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 two 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 medication for arrhythmias and were considering ablation surgery to treat them. 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 Post Pericardiotomy Syndrome. All of the symptoms fit, since I recently had 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 and told me ablation surgery was not indicated for my condition. All I had to do was take 600mg of ibuprophen three times a day for 2 weeks. The cost of my cure was $9.19 for a bottle of 150 ibuprophen tablets on sale at CVS.

The moral of my story is: sometimes you have to be your own advocate.

This blog was originally published on the Costs of Care blog. 

More Blog Posts by Angie Dresie

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Angie Dresie lives in Cincinnati, OH and graduated from Bowling Green State University with a degree in communications. She spent most of her career as a pharmaceutical representative but now owns and operates her own business. She was a 2012 contestant in the Costs of Care essay contest. Costs of Care is a Boston-based nonprofit organization that helps caregivers deflate medical bills and provide high value care—their blog illustrates the role of cost-awareness in medicine. You can follow them on Twitter at @CostsOfCare.

Tags for this article:
Health Care Cost   Participate in your Treatment   Heart Disease   Patient Engagement  

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