Mid-August Update

I wrote the post below last Saturday, August 16, 2014.  I didn’t publish it because we took Anya to the Emergency room on Sunday morning and I hadn’t quite finished the entire blog entry yet…


Anya’s been having a hard time lately.

We had our monthly transplant appointment last Wednesday.  Anya’s numbers were what we expected.  Her FEV1 was 19%; down from 28% in March.  Her arterial blood gas (ABG) showed that she was retaining more CO2 in her lungs than in March (60 mm HG versus 45 mm HG; normal=35-45 mm HG).  Anya’s been on 6 liters of oxygen since she left the hospital; up from 4 liters.  The doctors sent her home with a BiPap machine to help her get rid of the excess CO2 in her lungs and replace it with oxygen while she’s sleeping.

It sucks seeing this stuff on paper, but that’s the reality of Cystic fibrosis and chronic rejection.  With every infection, her lung function decreases, which is why it’s so important to stay infection free.  That’s our goal now…to stay infection free.

The big drop from 28% to 19% has been very noticeable too.  Daily routines that most people take for granted, like brushing teeth, getting dressed, taking a shower, eating, etc., are now 10-30 minutes ordeals, mainly because she can’t get enough oxygen while she’s exerting herself.


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