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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

author bio

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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