Finally discharged the night of March 7, 2013, I was in grim shape. Still very sick with asthma, I was profoundly weak and in great pain. When I asked the discharging hospital rheumatologist for a home health aide or other assistance, he just brushed me off and said, “We don’t do that.”
I knew damn well they were the ONLY ones who could do that. The doctor would have to have the hospital’s social worker arrange it with my insurance company while I was still an in-patient. But I was too weak and sick to fight about it, especially with a doctor who turned abruptly and just walked away. An appointment was scheduled for 8 am the next day with the chief of rheumatology. To this day I don’t know why I was on the rheumatology service.
Sicker than ever before
For three months, I’d been obsessed with learning about eosinophilia and the extremely serious diagnoses that might lay ahead because of it. Well, until having the worst cycle of asthma attacks and relapses of my life. Suddenly I was having complications unlike anything I’d ever heard of, much less experienced.
It made me feel as if I’d been jerked from warp speed in outer space to trying to swim with lead weights through quicksand on Earth. I couldn’t understand what was happening to me – was it part of this new problem, this eosinophilia? Was this what Dr. VL had been so worried about?
I was so exhausted by the days of no sleep common with acute asthma and steroids. So weak I couldn’t even grip my cell phone to research what to ask the doctor in the morning. I’d never seen a rheumatologist before. All I knew about it was that it was the specialty that oversaw a friend’s rheumatoid arthritis. Each and every breath I took was agonizing – more than with pleurisy and pneumonia and asthma together. I couldn’t even undress – I just rested on the sofa and tried not to panic.
How NOT to deliver bad news
The next morning, my dear friend Heba woke at an ungodly time to drive more than an hour in DC rush-hour traffic, pick me up and drive another hour into the city to the appointment. One slow, agonizing step after another, I made it to the doctor’s office. I’d never met him or anyone other than the rheumatology hospital team, but he evidently had been deputized to tell me something — and then immediately after, he was leaving the practice. The three-minute explanation I got from Dr. JK was devastating, but barest bones. Much had to be filled in from others in the weeks following.
He said, “What do you want to know?”
I could barely speak, the muscles controlling my vocal cords still largely on strike. “What’s happening to me? I’m so weak! Never been like this before. Is it a stroke? New pains in chest, back — so bad! When will it get better? Is it the same problem? Different? What do I do about it? How long?”
He snorted, shook his head and said, “The pain in your chest and back is costochondritis* — it will take about a year to heal. PT will help some.”
The dirty little secret of steroids
“The rest?” he continued. “It’s chronic and acute steroid myopathy! What don’t you understand about ‘chronic and acute’? You’ll improve some – but very slowly. Until the next asthma attack, when the acute phase will start again. Eventually probably either the asthma or its complications will kill you, or the complications from the toxicity will.”
[To set the record straight, until he mentioned “steroid myopathy,” I had never heard of it. Certainly none of the dozens of other doctors, in all the different teams that had consulted on my case in the hospital, ever mentioned it.]
I was so stunned by what he said, I couldn’t seem to take it all in, much less process it to ask any more questions. That was the end of his explanation – 10 sentences, and I can still hear him utter every word. He stood up, opened his door and waited silently as I struggled to my feet, shuffling out with my walker, before shutting his door behind me. “Bedside manner” was not a course he lectured in, I’m certain.
My friend took me back home, made sure I had food and was settled, and then left me to rest. And to try to absorb how so few words could change the world so completely. Because it was now in a completely different orbit than it had been in a couple of hours earlier.
Absorbing his diagnosis
First, let’s get the other definition out of the way: costochondritis is an inflammation of the cartilage that connects your ribs to your breastbone. (Did you know your ribs are connected to your breastbone by cartilage? I didn’t. I once was certified in CPR, but seriously do not remember any discussion of cartilage there.)
Doctors aren’t really sure what causes costochondritis, although in some cases it seems to occur with injuries, or with infections of some sort. In other cases, there may be a link with fibromyalgia, a later diagnosis I received. In my case, I’ve had serious pain in my chest before, I even live with a chronic pinch in my right lung. But I have NEVER experienced anything like this pain! Breathing deeply made it worse, as did coughing — so it was not helped by my asthma. The doctor’s estimate turned out to be correct, though. It lasted almost exactly a year, until the following spring. The repeated asthma attacks I had in 2013 and early 2014 probably prolonged it a couple of months.
From now on, steroids are toxic
Second, chronic and acute steroid myopathy is not a commonly phrased diagnosis, but it’s turned out to be quite accurate in my case. Basically, it means that I’d been given so much steroids over the years that these two weeks of massive doses had pushed the load in my body to toxic levels. From then on, every dose of steroids that entered my body systemically would destroy more of it.
Some of you are probably thinking — “Did she sue? Is she rich at least?” And my answer is “Absolutely not.” I knew there was no alternative to the IV and oral steroids.
Steroids were approved 70 years ago by the FDA. Since then there’s been pretty much nothing new to treat acute attacks. Plenty of new things prevent asthma, but if they don’t work, you are screwed. I heard the doctors’ discussions about what needed to be done each time I started crashing again. My body simply does not respond to anything other than glucosteroids for asthma, which is why it is so important to prevent my attacks.
Why wouldn’t they explain this to me?
None of the doctors who treated me had done anything except their best to take care of me. I wouldn’t penalize them, or the hospital, or the rest of the GW medical faculty for doing their best to save me.
But they should have explained what was happening when I asked – when I begged them for an explanation. I am a competent adult. I had the right to the information. And knowing would have allowed me to make plans, ask friends or neighbors for help that first night. Instead, I reclined on my sofa in my apartment, terrified.
I couldn’t have felt more alone if I were an astronaut.
Marooned outside the space capsule.
Untethered.
Drifting away.
Next Backstory #4 – Where’s a miracle when you need one?
