Wednesday, October 28, 2015

Drew Update

Last Friday, Drew had a bronchoscopy so that we could see what his lungs actually look like in real life (vs on a CT scan or MRI) and so that a good sputum sample could be collected from the depths of his airways. They always add a little sterile water into his lungs to wash things around and then suck it out to test to see what kind of bacteria it grows so that we can target our treatment. Different bacteria responds to different antibiotics, and viruses & fungus are a different game altogether, so its good for us to know what he has going on so that we can treat it appropriately.
I was prepared for the anxiety filled wait for results, when on Sunday I got a call from his doctor. My mind always assumes the worst when the hospital calls when I'm not expecting them too. She was calling to tell me that they had found a fungus called histoplasmosis, a fungus that is common in our part of the country, but that there was little data available on for treating in CF. She had called me on a Sunday knowing that she had a busy week ahead and wouldn't likely find time to talk, and wanted to walk through some options. When a healthy person has histoplasmosis in their lungs, you don't even know they have it. It sometimes shows us as a calcified lymph node in an x-ray many years after they've had this, but it typically isn't something that's treated  because its something that typically isn't even known about. Now, in CF its a different story. As it goes with most of the things we find in Drews airways, we treat based on symptoms. But the million dollar questions is does he have symptoms. He coughs a bit from time to time - I don't think hes coughing more than normal - but his latest CT scan showed some evidence of bronchiectasis and we were wondering if perhaps the inflammation caused by the histo was setting off a cycle of infection and causing lung damage. There isn't really a good way to figure this out, except trying to treat the fungus and repeat the CT scan to see if we notice a difference. There's all sorts of other complicating factors, like the fact that the typical treatment for this fungus cannot be taken with a PPI (Prevacid), something that we identified he needs to be on, so we need to consider other treatment options.
ANYWAY, because the lab report wasn't final and fungus is a slow growing beast, it not looks like it wasn't histo down there, but rather another fungus called Candida, something which we also know little about in CF. Drew great that once before and we didn't treat it and it went away, but we don't know if it caused lung damage or if the achromobacter that he's had for a long time is causing some silent damage. So we know nothing really, still waiting on more tests, not changing the current treatment plan for now, waiting to see what else we can learn before making a plan to move forward.
Its really frustrating knowing how little information there is on so many of these different things, something that was really highlighted to me at NACFC. There were tons of excellent presentations on research being done that gave no conclusion or recommendation, just the facts that we just really don't know. I think that we (CF community) need to get smarter about how we are collecting and organizing data that we gather on our own about ourselves. Aggregating this type of information can lead us in new directions, help us to put together this puzzle and really start to move things farther faster. We are getting there, but its never fast enough.

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