My earliest memories, when I was about 3, often involve struggling to breathe through the thick mucus of severe asthma attacks, long before I knew what any of those words meant. Nothing like today’s drugs existed. With few safe ways to treat it, too many children with severe asthma died back then.
I missed all but two weeks of third grade, and the rough equivalent of two to three days out of every week of school for all 12 years. But I did graduate high school on time. Working part-time jobs and all holidays, I saved for a summer-study program in Europe before college started. I dated (more than a few ending in ER races). But asthma always was a part of my life, forcing me to plan around the possibility of it.
That summer-study program changed my life – making some things possible I’d never even considered before. I returned home to college and fell in love. I became a journalist in those first heady post-Watergate years, then went into nonprofit and corporate management, and consulting. Occasionally my lungs benefited from new medications, but not often enough. Although over the decades I seemed to be improving, we never knew when an infection or an allergic reaction would send me to the ER. But slowly, my lungs and immune system grew stronger.
Charting a new route
My professional interests gradually focused on economic development. Later, I decided to pursue a lifelong dream with an intermediate step. Stepping back from consulting, I moved halfway across the country to earn a master’s degree in international relations and international economics in Washington DC. Then I began work on programs around the world helping women, in particular, and other disadvantaged groups establish businesses of their own, and governments create programs and policies to support them. A relatively new concept called microfinance, it gives women and others without their own assets or access to traditional avenues of help a chance to build a small business of their own. Often it is also their first chance to better their lives and the lives of their children. And their first opportunity to earn money of their own, separate from their husbands or other male family members.
Strangely, after moving to DC, my asthma slowly worsened again. It took seven years before we finally found the cause – toxic mold hidden inside my apartment’s wall cavities. I moved out at once, but by then my lungs had been permanently damaged.
Steroid damage
The average 60 mgs per day of prednisone (that was a rough total of more than 30,000 mgs, or 30 grams of the oral steroids) I had taken for the last 18 months I lived there barely controlled the worst symptoms. But those steroids on top of all the others I had been given over the years have condemned me to serious health problems that will affect me for the rest of my life. Even after moving out, and despite the advances made since in preventing it, my asthma periodically would worsen, without any link to known triggers or infections, puzzling us all.
The steroids triggered other new chronic medical problems, several serious. And other problems seemed to crop up with increasing frequency and no explanation – but each contributed to the overall worsening of my health.
Years later, in 2012 (and completely by accident), one particularly persistent physician, the allergist who had treated my asthma for several years and was also puzzled and concerned by what she was seeing, discovered that I had abnormally high levels of eosinophils, a type of white blood cell found in some severe asthmatics. In those patients, the eosinophils, instead of targeting an invading parasite or infection, attack the body itself, causing permanent, sometimes fatal, damage.
A rare diagnosis
In 2017, I was hit with another major diagnosis: atypical idiopathic HyperEosinophilic Syndrome (HES). ‘Atypical’ because my symptoms were not the most common ones, but varied sometimes by the week or month. ‘Idiopathic’ means they haven’t found a specific cause or trigger for my HES – no known infection, no genetic error or other internal cause, no cancer. No telling how long I’ve had it, but now I’ve gotten more familiar with how my body feels when my eos levels rise, and can feel how it responds (or doesn’t) to medication. With my new awareness, I think I’ve had it much, much longer than the past seven years we’ve documented. THIS was the explanation for the strange symptoms I would report to various physicians for the past 30 years, frequently to have them be shrugged off, or referred for the same tests over and over again, but always without an accurate diagnosis or treatment. And those years of misdiagnoses frequently resulted in treatment with medications that created other problems.
Turned out it was also the explanation for the strange new asthma I was having. Called eosinophilic-asthma, or e-asthma, it didn’t respond to the medications I used either to prevent an attack or to treat one. Now we are constantly on the alert for other organs, besides my lungs, damaged by the eos.
Dealing with all this has been hard, I admit. Luckily my family and friends, and my excellent medical team, have been here to help. Often in ways that have surprised and humbled me.
And since June 2018, I’ve been on a new medication, called Fasenra (benralizumab), that’s making a real difference for me. Finally, I can see beyond just barely getting through each day.
As supportive as they’ve all been, none of them, though, not even the doctors, really understand what it’s like to try to cope with so many complicated medical problems on top of the severe asthma. It’s more than a full-time job, and often it’s an overwhelming one.
Any other unicorns out there?
I’ve read some great blogs by other severe asthmatics, the kind that remind me how lucky I’ve been and just how much worse my asthma could be. But the only blogs dealing with eosinophilia have largely been by/for parents of children with eosinophilic gastritis or esophagitis. None deal with the weird and challenging mix of problems I have, or all the other complications I’ve developed. So, I am starting one.
I don’t believe I’m the only unicorn wandering around. Maybe the others just haven’t gotten around to looking for anyone else. But if we sail in the sunshine while documenting my odyssey, maybe others will spot us and come along.
Next The Backstory -how I got here, parts 1-5
or Managing Asthma and allergies
The Two-Minute Rule or Coping with a whiny, sick child
Learning to manage asthma – as a child or an adult
Sometimes you just need to send in the women
Or if you are more interested in the shorter blog posts, start with Let’s Talk! And I’ll share some tales
