Almost ABPA

Friday, June 14, 2013
One of the things that made Samantha's recent hospital stay so confusing and frustrating was the reason that she what got her in the hospital in the first place. Actually, to make it more concise, it was the lack of knowing what got her in the hospital that was confusing. At first, everyone thought it was a bad asthma attack that triggered what basically amounted to a fight between her lung's asthma reaction and cystic fibrosis reaction. Since they were fighting against each other, they essentially kept getting worse until her lungs were so clogged we had to have her hospitalized.

Then, a basic allergy screen came back with elevated levels of aspergillus, a fungus that anyone can grow in their lungs, and usually doesn't cause any problems, but can mean trouble for asthmatics and CFers. It was thought, based on this initial screening, that Sam's body reacted violently against the fungus and her CF went into overdrive, so it was no longer an asthmatic exacerbation. To fight back, the doctors put her on a fairly high dose of steroids. In the longer term, as she was to be brought down off of steroids (called "tapering"), she would need shots every 2-3 weeks. It was very unnerving to us. If you know Sam, you know she is deathly afraid of shots.

Making things more frustrating was the fact that the testing took so long. Or at least I'll say it was very frustrating for me. However, we finally got results back!

From Alicia:

Sam's pulmonologist called today to tell me Sam's test results have come back negative for ABPA. Without getting complicated, Sam falls in the "possible" category which means time may reveal something more, but for now she is considered NOT to have it. 

So what does that mean for us? We will start tapering down her steroids immediately, watching very closely to see if any wheezing or coughing returns at each reduction. The best news in my mind is we just avoided shots every 2-3 weeks, which was going to be the treatment. Yippee!!! It also means that Sam's asthma went into overdrive for the first time in her life, most likely triggered by several environmental allergies we have discovered. We'll be seeing an allergist and "beefing" up the asthma preventative treatment. 

You've all been so good to pray for us, so what to pray for now: The tapering down of the steroid can be tricky physically and emotionally, so please pray for lots of love and understanding around our home. Also, if you have seen Sam lately you can tell she is looking ROUND. That weight gain is from the steroids, and will fall off as we taper. Please pray as we transition back to keeping her BMI at a strong level without the steroids.