I just got back from the Mayo Clinic on Friday of last week, and before I left, the very nice vampires…er, phlebotomists took sample number 4,329,972 (approximately) of blood from me to check a few very specific and rather obscure things that my Team of Pulmonary Magic asked of them.
Just yesterday, I got a call from Mr. Holland, my pulmonary physician’s assistant (who, incidentally, is eminently more qualified, personable, dedicated and awesome than 98% of the MDs I’ve ever known, and has been with Mayo for 25+ years. He’s also from Illinois, which makes him extra awesome, even though he has not in fact written an opus. Someone give this man a raise.).
Clue #1 is in.
Sparing you all the scientific flotsam, two of the antibody tests they ran came back super-positive, as in three times the normal levels. In particular, one of them was an antibody that is created in response to a hypersensitivity to protein in the feathers, dander and poop of certain kinds of birds. It’s usually called Pigeon Breeder’s Lung or Bird Fancier’s Lung, because it’s often seen in people who work in aviaries, raise pigeons, or have lots of birds as pets.
But since I don’t raise any pigeons or have birds in my house, the culprit is most likely to be…the down that I love and have in many pillows and comforters throughout the house, and have for years (and of course sleep in regularly when I’m traveling and sleeping in hotels).
I know. Bird feathers. WTF? After two years not breathing. Bird. Fucking. Feathers.
Anyway. The condition it creates is called Hypersensitivity Pneumonitis, an inflammatory immune response in my lungs that prevents all the little air sacs in there from working properly. It can apparently show up like this after long-term exposure to an antigen – in this case, the down – and eventually we cross a threshold where the lungs essentially scream out “NO MAS! WE WILL REVOLT! AND YOU WILL NOT BREATHE!”
(I’ll give you a minute to imagine Che Guevara armed with a feather pillow.)
I’m heading back to Mayo in a couple of weeks to do a lung biopsy via bronchoscopy (FUN!) where they’ll confirm whether this is indeed the chief problem, evaluate the level and type of inflammation we’re dealing with, and investigate how much fibrosis/scarring has occurred in my lungs to date, if any.
Best case scenario, the damage is minimal and a course of treatment over the course of several months (oxygen and steroids) will allow my lungs to heal now that Big Bird and all his fluffy, cushiony companions have been evicted from my house permanently. Good thing I didn’t buy that down jacket I’d been eyeing.
Worst case scenario, there’s permanent scarring or fibrosis of the interstitial areas of my lungs and I’ll need to be on some kind of treatment with oxygen and steroid for the long-term. Which would suck. But it’s better than not breathing and/or being dead (an apparently significant side effect of not breathing).
Either way, this is looking like good news. Bird feathers may seem really anti-climatic, but that’s kind of what we’re looking for here. There were several possibilities on the table, some scarier than others, but this I can live with. Literally. So I’ll take it.
I’m ever-grateful for the team of doctors, specialists and technicians at Mayo and the Team of Pulmonary Magic who have dedicated many, many hours and much brain power to figuring out what’s wrong with me. They have refused to give up and have tested nearly everything possible thanks to their willingness to look at uncommon conditions and, more importantly in my case, even more uncommon presentations of uncommon conditions. And I know they’re going to cross every T and dot every I to be sure that they’ve got it right and haven’t missed something.
I’m so hopeful that this is THE answer, and that this next month will end with me finally on a course of treatment and a path to healing that has been a very long time coming. I’ll know more when I’m back and will of course update all of you. Because if you’ve honestly read all of this so far, you’re a very special and patient person indeed.
So if you’re visiting me in Chicago, you’re not allowed to bring your bird to my house. I will have to be That Customer for the hotels I visit, requesting that they remove all the down bedding from my room before I get there, along with placing my 57-degree Evian and green M&Ms. I will have to stop trying to hug ducks. I will admire puffy, fluffy coats from a distance and have to let go of that someday dream I had of raising carrier pigeons in my dining room.
And Big Bird, I’m afraid it’s over between us. It’s not you, it’s me. Well, actually, it IS you. But it’s nothing personal. We can still be friends.
As long as you don’t set foot in my house.
Thanks again to all of you for the support during what’s been quite an adventure. I appreciate it more than you know. To the hyperbaric chamber, heroes! And here’s to your health.