special thanks to Kary Delaria
Two years.
That’s about how long I’ve been living with this strange illness that leaves me breathless all the time and that has totally and completely screwed up my life and my health. No one could figure it out, until Mayo Clinic came along.
Today, I finally got the answer I was looking for.
I have an atypical (read: weird) presentation of a condition known as hypersensitivity pneumonitis, caused by a long-term exposure and following reaction to the proteins found in bird feathers. In my case, those feathers appear to be the down that I’ve had in my bedding and decorative pillows for years.
It was weird mostly because things like my x-rays and my CT scans were rather unremarkable, and don’t show the telltale signs of HP. Also, down isn’t a typical trigger for this, it’s even called “Pigeon Breeder’s Lung” or “Bird Fancier’s Lung” because it shows up a lot in people that have birds as pets or spend lots and lots of time breeding them. I promise this isn’t a strange secondary career for me, apparently I just have an unusually high sensitivity to these proteins, and so my immune response to them has been off the charts.
The heroes of the day are my pulmonary team at the Mayo Clinic who did three absolutely critical things for me:
- They believed me when I told them something was really, really wrong and that I wasn’t getting answers elsewhere;
- They tested and tested and tested some more for weeks on end;
- They never, ever gave up even when my case got more and more confusing.
Dr. Jay Ryu, Dr. Misbah Bakir, and Mr. Paul Holland especially deserve my thanks for leaving no stone unturned. Dr. Ryu’s seasoned eye recognized my condition even with an uncommon presentation and was the one to encourage the tests that ultimately uncovered the positive antibodies that gave us the answer.
They weren’t particularly surprised that it had taken me this long to find answers, because, well, it was a tricky one to figure out. Have I mentioned I can’t ever do anything the easy way?
The best news is that it’s likely curable.
I’ll be on a course of steroids and immunosuppressants along with preventative antibiotics, and I’ll still be toting around my oxygen for a while as I heal (which will take many, many months overall).
I’ll also have to do all kinds of things to detoxify my house. All the feather/down products have already been removed, but I’ll also need to have air tests done, get ductwork cleaned, have abatement of air toxins done (if they’re present), and likely even replace some pieces of furniture that have had long exposure to the bird antigens. It’ll be tedious and expensive, but you can’t really put a price on breathing.
I’ll be back at Mayo clinic every few months during the next year or so for follow-up and testing to be sure I’m on the right track to healing. There is a slight chance that some of the damage is permanent and that some of my condition will be chronic. But I’m choosing to be optimistic and do everything I can to get better and deal with that when I get to it.
The short story is that we have a treatment plan. I have an answer that is treatable, not life-threatening, and something I can address and avoid in the future (though I will miss those puffy down comforters in Westin hotel rooms). My chances of recovery are excellent. And I have incredible doctors who have shown me that there are physicians who will stop at nothing to find answers for their patients.
Frankly, I’m not sure I believe it yet. I’ve lived in limbo with this for so long now that having something to call it is strange.
But I also have an enormous weight lifted off my shoulders. Relief that there is help in sight, and that I don’t have to live like this forever. Restoration of my faith in medical care. Gratitude that, for all of the scary things it could have been, it wasn’t any of them. And the anticipation of running around with my kid again like I haven’t been able to do in a very, very long time.
To all of you who have offered support, compassion, and understanding during these challenging couple of years for me, I don’t know how to thank you enough. Going through shit like this is no fun, and it’s even worse in the moments when you feel terribly alone.
Today is a very, very good day.
And birds? You’re really cute when you’re flying around outside. But when you’re in my house, you suck. So stay over there and look cute from a distance, ok? Ok.
