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 preventive drugs existed. There were few safe ways to treat it, which is why so 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. But asthma was always there.
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. Became a journalist in those first heady post-Watergate years, then went into nonprofit and corporate management and consulting. The whole time my lungs benefited from new rescue inhalers and preventive medications. I 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, after my divorce, 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. A new concept called microfinance, it gave women and others without assets or access to traditional avenues of help a chance to build a small business of their own. Often it is their first chance to better their lives and the lives of their children.
But 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 I had taken for the last 18 months I lived there barely controlled the worst symptoms. But those steroids 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 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, my doctors 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 HyperEosinophilic Syndrome (HES). No telling how long I’ve had it, but I’ve gotten more familiar with how it feels, and how it responds (or doesn’t) to medication. Now I think I’ve had it much, much longer than the past seven years we’ve documented. Also I have a new form of asthma (lucky me!) – eosinophilic, or e-asthma. So 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 for the past 10 months 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 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 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
Or if you are more interested in the shorter blog posts, start with Let’s Talk! And I’ll share some tales