Obtuse Corneal Hydrops

Well, my corneal hydrops are back. And just in time for me to get on a nine-hour flight to London with a four-month-old baby!

I've done some of my own research, which I know are among the scariest words a non-medical professional can speak (but like being a mad, ignorant voter, it's so fun!), but really I don't think I was able to do much damage, because it doesn't seem like much is known about the condition by anyone. 

Corneal hydrops occur when a layer of your cornea called Descemet's membrane rips, letting fluid leak where it shouldn't and resulting in extreme tearing and eye swelling. It is an uncommon side-effect of my already uncommon keratoconus -- don't I feel special -- and nobody really seems to know what causes it or how to prevent it. Likewise, in terms of treatment the prevailing medical opinion seems to be summarized as "suck it up, buttercup". There are some saline drops to draw out the fluid, and you can take Tylenol for the pain, and other similar OTC medications for other secondary symptoms (e.g., Sudafed for sinus congestion) but that's about it.

There was one interesting thing I did find, though. Virtually every source on corneal hydrops appends "acute" in front of it ("acute corneal hydrops"). The "acute" means that it presents suddenly and without warning. But that doesn't describe mine -- in my case, I start noticing symptoms progressively over the course of a week or so. In fact, even that's a bit misleading, since the "symptoms" that correlate with hydrops for me -- essentially, sinus-like symptoms on the left side of my face -- are not as far as I can tell normally associated with hydrops at all. But for me, they always go hand-in-hand, and they predict a forthcoming hydrops event with alarming accuracy.

So a week ago I started noticing those symptoms start to appear and wrote my doctor asking if there was anything I could do to forestall the hydrops before my trip. He replied, in so many words, "nope -- good luck!" I was able to manage the sinus-symptoms with OTC medication, but last night my eye finally -- for lack of a better word -- exploded. Have you ever woken up feeling dehydrated because of the amount of fluid you've lost leaking out of your eyeball? Because I have!

This is the third time I've had hydrops in the past year. The first time occurred while I was on a plane from Portland to Tallahassee, and it was deeply unpleasant (as in, the flight attendants who saw me asked if I needed paramedics to meet me at the gate). I think the dry airplane air exacerbates the effects dramatically. So you can imagine how excited I am to get on a nine-hour international red-eye flight with an infant while ailing with this particular condition.

We leave on Wednesday evening. Saturday, Sunday, Monday, Tuesday ... basically, four and a half days for my condition to improve.  I'll stock up on eye drops and other palliative interventions, but still -- pray for me. (And remember, all of this could have been averted if we had a functioning health care system).