Tuesday, September 2, 2008

Shawn's CF Story

Shawn did not "grow-up" with CF. Not knowingly.

Shawn remained undiagnosed until he was 27.

His childhood health was not far from the norm, health wise. Ear infections that ultimately led to tubes being placed, tonsils, and adenoids removed. Not uncommon in "normal" children. He had normal growth, wt gain, puberty etc. He played baseball, rode ATV's, led a normal active guys life. A persistent spasmodic cough he developed was explained away by the fact that his home was heated with a wood burning stove. At 15 he was diagnosed with asthma and allergies, given an inhaler and told to stay away from cut grass, pollen, dust, dander, etc.
Standard everyday common allergens.

Shawn never behaved any different from his friends.

From age 15-21 Shawn lived part of the time on The Gulf Coast in Naples Florida and part of his time in Boston. He always worked hard no matter where he lived, no desk jobs for this guy.

Shawn moved back up North in late 95 and our relationship began in early 1996, he was 22.
He coughed sometimes, mostly after a laughing fit, or after having water or saliva "go down the wrong way", but he told me he had asthma, I was satisfied with that. What the hell did I know.

Our relationship progressed. Shawn, Sara and I lived in an apartment together for the next 4 yrs. Most of that time spent in blissful ignorance of CF.
His cough always made me wonder though. Now that we were living together I realized that he woke up coughing at night, and that in the mornings he was always coughing and spitting. Gross!

I asked him to see his doctor. He did. His doctor said he had asthma. End of story.

I didn't believe that doctor. No tests were done, he had simply reiterated what was already a documented diagnosis for Shawn.

I became irritated that his symptoms were brushed off. That he was being brushed off.

I started going to librabries, book stores, anywhere that I could get my hands on info related to a wierd cough. After hours and hours of research and a major process of elimination I felt like I had narrowed down the possibilities to emphysema and CF.
Neither one fit perfectly.
The emphysema didn't fit because, I felt he was too young, he didn't smoke, no environmental hazards, he wasn't barrel chested, emaciated etc. But he did have that disgusting productive cough.

The CF didn't fit because he was "too" old, he wasn't sick enough, he didn't have digestive issues, he had developed physically normal, he seemed too healthy. But again, he had that disgusting productive cough.

Trying to get him diagnosed we went through two other pulmonologists, PFT's were done, the diagnosis was "mild obstructive asthma" . Both of these doctors flat out refused to test him for CF. The suggestion was ridiculous to them.

During this time I decided to go to school and become a nurse. I felt like I wasn't being taken seriously because I was without the proper credentials. I was frustrated that these Dr's had this much "power".

Disgusted by their inability to even entertain the idea that they might be wrong.

1 comment:

Lisa said...

Thanks for sharing the story!