Misdiagnosed Repeatedly: Cheryl’s Story

Misdiagnosed Repeatedly: Cheryl’s Story

I noticed I had a cough that would not go away in November 2007. I knew it wasn’t a cold, because I didn’t have any other symptoms of a cold.  I went to my doctor the next month, and she couldn’t identify a cause.  She suggested that I try allergy medication for a week, but that didn’t work.  She then prescribed an inhaler to open my airways for what she thought might be asthma induced by cold weather.  The inhaler didn’t work either.

The X-ray that my doctor ordered was lost or misplaced.  My doctor then had me do pulmonary function tests that showed some mild obstruction.  I became more and more short of breath and easy tasks like taking a shower or tying my shoes became harder each day.  On the morning of Feb 15, 2008 I was short of breath even when lying down.

I got ready for work and debated about making a stop at the ER on the way.  I’m glad I stopped, because I had blood clots in both lungs (pulmonary embolism/PE) and was admitted right away for five days.  I took blood thinners for 6 months and after a month off of them, I had more blood tests as requested by my hematologist.

The tests showed that I had Protein S deficiency, Protein C deficiency, and Antithrombin deficiency.  My hematologist said it is like being struck by lightning three times.  I will be on blood thinners for the rest of my life to prevent future clots.

I had no idea what a PE or DVT (deep vein thrombosis) were until the day I was diagnosed with a PE.  An ultrasound also showed a DVT in my left leg from which the clot traveled to my lungs.  Now I have monthly visits to the doctor to check my PT/INR.  I am more careful about what activities I participate in, because blood thinners can make one bruise and bleed more easily.

I am now much more aware of how blood clots can be a matter of life and death, especially after surviving a PE.  I am convinced if I had not stopped at the ER that February morning I would not be alive to tell my story.

My message to others:

  • Get any symptoms checked immediately, especially shortness of breath that is unusual, such as when it persists at rest
  • Share information about blood clotting disorders with your family, since they are more often inherited

Take Home Messages

  • See messages above from author
  • Blood clotting disorders associated with blood clots in form or DVT or PE are usually treated with blood thinners for life
  • Pulmonary embolism can be misdiagnosed as other lung conditions
  • Go to the Emergency Room for symptoms unusual shortness of breath; this wise decision saved Cheryl’s life
  • Tell your family and friends the signs and symptoms of DVT and PE
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