Danielle's Story...

 

What happened to get to this point?

Over the past several years, Danielle always got sick around the change of seasons.  Over the past couple years that illness would linger a bit longer then in the past.  She decided to go to our family doctor to try and figure out what was wrong.  She didn't get the help needed there - so she decided to see an allergy doctor. 

The allergist diagnosed Danielle with asthma and did some allergy testing.  She started Danielle on allergy shots to help reduce/eliminate her allergies.  After about 10 months of not getting better - actually feeling worse, she changed doctors. 

In October, she saw a new asthma/allergy doctor.  He believed that Danielle should be in better health so he ordered a few heart tests and a CT Scan of her lungs. 

At her appointment in December, she was handed the results of the tests, which indicated a primary diagnosis of LAM, and he suggested we go see a pulmonary specialist - even go to the Mayo Clinic.

 

Research

Over the next few weeks, we did a lot of research and web surfing on LAM and found the information to be quite grim - as our doctor said it would be - and decided we couldn't wait too long to see a specialist.

The week of Christmas, we went to Loyola to see a pulmonary specialist - he confirmed the CT scan with a 95% diagnosis of LAM.  It is so rare, he had only seen one other patient and suggested we see the top doctor - Dr. Frank McCormak - at the University of Cincinnati.  We scheduled an appointment right away.

 

Looking Back

LAM is often misdiagnosed - so we tried to look back at when this all started - to get an idea of how long Danielle has had LAM.  Danielle can remember back to August 2004, at a convention in Dallas.  She had breathing issues using the stairs going from the room to the convention center.  Kyle was only over a year old, so she simply thought she was out of shape from having Kyle and the lack of exercise.

There are similar examples from the Wisconsin Dells in 2006, Disney in 2007 and other vacations - places with steps seem to be the most trouble.

Lately, however, just going from our tri-level bottom floor to the top floor with a load of laundry wears her out. 




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