Sunday morning (August 17, 2014), Anya woke up and had a really tough time catching her breath.  Literally going from the bathroom and back, she just couldn’t seem to “recover” from it.  She wasn’t sure what to do; neither was I, so we called her sister, and we all agreed that she should go to the ER at Fairfax Inova.

We weren’t sure if we had enough portable oxygen tanks or the capacity (10 liters per minute) to get her to the hospital, so we called the Fairfax County non-emergency number to send an ambulance.  The ambulance came within 10 minutes, asked a bunch of questions, and then whisked Anya away to the ER.

I followed about 10 minutes later with a bag of clothes and her ipad.  We’ve done this before, but never in an ambulance.  In the ER, they pumped her with some albuterol nebulizers to try to open up her airways and help her breathe a little easier.  Anya was noticeably gasping for air.  I was pretty worried.

The nebulizers didn’t seem to work, so the ER doctor decided to try something called Heliox, which is a Helium/Oxygen 60%/40% mixture used to help remove CO2 from the lungs while also providing oxygen.  After 30 minutes on the Heliox, Anya was noticeably better.  She wasn’t struggling as much to breathe, but still not quite normal yet.

By 6:30pm, she was stable enough that they decided to move her out of ER and into the Critical Care Unit (CCU, aka ICU).  In the CCU, they immediately started her on the usual set of antibiotics (meropenem, zyvox, & bactrim).  The struggle to breathe, in addition to all of the meds that they put her on really took its toll on her, as she slept all throughout the night and pretty much all of Monday.

By Tuesday morning, Anya was still groggy, but awake and alert.  I think she totally lost an entire day in her mind because she was asking me questions about the day before, thinking that it was still Monday.  I don’t blame her because she was in pretty bad shape on Sunday and Monday.  I can’t imagine the amount of energy that she expended gasping for air.  Her resting heartbeat for about 6-8 hours was 130, which is a slow jog for most people.

So, what we’ve learned from the doctors in the past few days is that Anya’s cultures, from her last hospital stay, grew out a mycobacterium called M. Abscessus.  It’s a pretty nasty bug, but they think it’s treatable with a cocktail of antibiotics, which they’ve already started her on.  They haven’t been able to get another sputum sample, so they’re not sure if there’s something new growing or if it’s the same bug that caused her shortness of breath on Sunday.

Right now, the doctors are pretty concerned about Anya’s breathing.  She’s on 35 liters of oxygen.  Too much to give her a much needed bronchoscopy to clear out the mucus in her lungs.  If they do a bronchoscopy, they will need to intubate her and put her on a ventilator which will bring on a whole new set of risks.  Without the bronchoscopy, the mucus will continue to be a harbor for unwanted bacteria and fungus.  So, it seems as though we’re in a “hurry up and wait” mode.

The docs are hoping that Anya can clear the mucus up herself through coughing and chest respiratory treatment.  They’re also waiting to see if the anti-biotics are helping or not.  So far, she’s better than she was last Sunday afternoon, but still not as good as she was before she got sick again.


On the transplant front, we’ve heard back from all three centers.  Fairfax Inova was the first the reject us.  They’ve only performed one CF retransplant and the outcome was not good, so they are reluctant to do another one at this time.  Cleveland Clinic rejected us for the same reason that Duke rejected us.  Anya’s liver is of concern for them.  And we just heard back from Pittsburgh on Wednesday.  They are reluctant to take Anya on because she is in the ICU at this time.  The doctor did tell us that they’d be willing to give her an evaluation if she can get stronger after this hospital stay.

At this time, we’re going to turn our focus on getting Anya better from this recent infection.  With this mycobacterium in her lungs, more weight loss, and decreased lung function, it will be hard to convince any center to give her a chance.  However, if we can get two consecutive negative cultures, gain some weight, and perhaps show an improvement in lung function, then I think we’ll have a better chance.  Getting accepted into Houston Methodist Transplant Center in Texas will be our next goal, but first things first, which is to get her stronger…

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