Some things irritate me so much I feel skin pulling loose from my bones. This is an asthma story. It may bore you. I’m sorry it’s so long. Don’t let it irritate you.
I’ve visited allergists and specialists so many times. When I was in high school–Go, Pirates!– my mother took me to my doctor because I kept breaking out in hives. One time, the cause seemed to be canned ham. (Remember canned ham? In my younger years, I sent one to every friend or family funeral.) Next, it was green beans from a can. Really?
The doctor(s) finally concluded it was, indeed, a food allergy, but could never pin it to one food. Maybe it was something used in the canning process of meat and vegetables.
Looking back, I wonder if it could have been stress. The doctors asked my mother if I was upset about anything. She said no. She didn’t ask if my algebra teacher, Sullenberg, could have finally irritated me so much that I developed red bumps all over, from my scalp to the soles of my feet.
The hives case seemed to just go away when I moved from 11th grade to 12th grade and no longer had to deal with the mathematical chaos in my brain. No algebra, no geometry, no calculus, and, thank the heavens, no trigonometry, even though the recommendation for academic students was to study trigonometry. Or was it calculus?
As a young mother, I was a magnet for contact dermatitis, the kind that peels off layers until there’s blood. On my physician’s advice, I was to wear gloves all the time, especially when peeling potatoes or changing the bed linens. (Yes, really.) I’d already begun to wear brightly colored latex when washing dishes, so I grabbed them every time I touched root vegetables or washed the sheets. But my hands were still so raw that the FBI could not have lifted a thumbprint.
The next doctor advised that I was probably reacting to the wet latex when moisture leaked through the lining of the gloves. He ordered some neoprene gloves. They were vast and magical, lined with a knit cotton and wouldn’t let anything seep through to my hands, but I couldn’t master changing sheets or peeling a spud.
He also sent me to the radiologist to have X-ray treatments on my palms and the inside of my fingers twice a week. Those were the cure. I never had contact dermatitis again after ten treatments. Now, AI tells me that X-ray is not the first-line treatment for contact dermatitis and is even considered to be highly ineffective.
Then, one day much later, the hives reappeared. The doctor gave me Valium that I took once a day, every day, even through my pregnancy with my second son and a couple of years after, until the experts decided we really shouldn’t be taking Valium.
The hives were gone, really gone, until my sons were in fifth and eighth grades and I was in a marriage gone to Hades and smoking like I was already in hell. I kept telling my doctor that Valium did the trick some years before, and he said, “Oh, I bet it did!” (He wouldn’t let me take even a smidgen of Valium.)
This time it was Elavil, but I was only to take it when I felt hives coming on. It worked, but it also knocked me out for two or three hours, which was highly unpopular in my profession. That would have been the case in any sort of work, I would guess.
More than once, my assistant would knock on my door to check on me, only to find me with a throw pillow under my head on the desk, bleary-eyed and drooling. I learned later that Elavil is an antidepressant sometimes given for headaches. My mother suffered from migraine headaches and was prescribed Elavil in the 1960s.
Years later, after the second divorce and marriage to Dave, I contracted a virulent case of bronchitis. I coughed and wheezed for weeks, until a doctor I worked with said, “Diana, you’ve got asthma.”
I said, “Surely not, at my age.”
He assured me that he’d seen several cases of adult asthma and referred me to a pulmonary specialist at Vanderbilt, one Elizabeth Willers.
“Yes,” she said, “this is cough variant asthma. The first thing we need to do is send you to ASAP to find your allergies.” ASAP is the Allergy, Sinus, and Asthma Program, operated by Vanderbilt.
I said, “I don’t think I’m allergic to anything.”
Dr. Willers answered, “You’re allergic to something or you wouldn’t have asthma.”
The testing involved tiny pricks on the inside of my arms with various allergens. After testing, I reviewed my results with a Nurse Practitioner.
“Good news and bad news,” the woman said. “The closest you come to an allergic reaction on this test is cat hair, and your reaction was not very high on that, certainly not high enough to be called an allergy.”
“Cat hair,” I said. “I’m not close to any cats.”
She nodded. “So you’re not allergic to anything. But you are highly irritated by a lot of things.”
I sighed and told her, “You have no idea.”
*
It was back to Dr. Willers, who was surprised by the results.
She said, “So you may be allergic to something that we can’t test for. The main task at hand is to treat you for asthma. She prescribed a new medication called Advair, a small disk-inhaler filled with two kinds of medicines combined.
Advair did a strange thing. It made me cough worse. Dr. Willers changed it to something else, then something else, and something else, and treated me for a couple of years until I had to make traffic and parking easier. Willers was leaving Vanderbilt, too, and she gave me a recommendation.
Laura Hunt was, and is, a fantastic specialist at a Vanderbilt-associated clinic at Williamson Medical Center, about fifteen miles away. (The traffic and parking were so much better! Hunt was not her last name then, but she got married. Now I can’t remember her other name.) She and I clicked right away, and we charmed each other with humorous stories. She was fun.
Dr. Hunt ordered some serious testing and, sure enough, I had asthma. For some reason, she wanted to try Advair again. Once again, the cough became severe.
“Why didn’t you tell me you’d tried Advair before?” she asked. “I’m supposed to make you well, and I’ve actually given my patient something to make her feel worse!”
We sampled every inhaler known to medicine, some I’d already taken, until Alvesco seemed to help more than anything else. I took it for years. Dr. Hunt also ordered a nebulizer, several rescue inhalers, Singulair, Zyrtec, and Asmanex, some of which I was already taking. And I got to experience that rapturous asthma test every other year. I flunked that test time after time.
The cough would reappear. Prednisone would kick it in the butt, but oh, the joys of steroids, and in a month or two, I would start coughing again. I was in and out of the clinic so often, I knew every employee by name, even following their marriages, births, divorces, and children.
I decided I needed to find a pulmonary specialist closer to home. All of my physicians (and my mother’s and father’s) except for Dr. Hunt practiced at St. Thomas West. It seemed logical to have them all in one place. Dr. Hunt agreed with me, citing having my parents’ physicians and mine at one place, given they’d moved in with us recently. I was managing their health and mine.
*
My primary care doctor’s nurse sent a referral to St. Thomas Pulmonary Group and handed me a card with the appointment date. I wasn’t sure which physician at the group I’d be seeing, but the nurse told me I’d be seeing one of the new ones.
At the pulmonary desk, the receptionist said, “You’ll be seeing one of our new physicians, Dr. Willers.”
“Elizabeth Willers?” I asked.
“Yes, she is not a newly credentialed doctor,” she said. “She comes to us from Vanderbilt.”
I did not tell her that I already knew Dr. Willers, but I thought, “What a full circle.”
When Dr. Willers came into the room, she said, “Long time, no see.”
“They told you I was with you a few years over at Vanderbilt, didn’t they?”
“Yes,” she said, “but I think I would have remembered you in a few minutes. I remember your voice. Weren’t you the one who told the ASAP nurse you were irritated by many things?”
We both started laughing. She asked me if I was doing well on the current medications.
“Okay,” I said. “Just okay. I’m still coughing.”
“And you’re taking everything we can give you,” she said. “How often are you using your ProAir?”
“Maybe once or twice a week,” I said, “but I don’t have acute attacks when I can’t breathe. I have coughing attacks that last for months, it seems, until I take some Prednisone. I hate that stuff.”
“Prednisone is a double-edged sword,” she said. “It works, and pretty fast, on these conditions we prescribe it for, but there are those side effects.”
“Yes,” I said, “sometimes nothing else helps.”
“Diana, if you ever feel like you need a tapered regimen of Prednisone, just call in. By now, you know when you need it. Just call and I’ll send in a prescription.”
“Okay, are we going to do anything else?”
“I would think about keeping that nebulizer close. Use it twice or three times a day when the coughing starts to get worse. Let’s set you up to see me in three months. Do you need some Prednisone today?”
“Yes,” I said, not admitting that I wanted to keep it on hand for the worst fits.
She said she was happy to see me, that I had been one of her first patients, and was looking forward to working with me. I told her I was delighted to see her again, too.
On my second visit with Dr. Willers, I told her, “I’m coughing constantly. I’m exhausted.”
She leaned back against the sink and informed me of a new biologic to treat asthma where no allergies are positive. She said she had heard really good things about this treatment for eosinophilic asthma. She referred me to an allergist who would determine what kind of asthma I had and if he would recommend Fasenra, a relatively new biologic administered in an injection every other month.
The allergist confirmed my situation with eosinophils and prescribed the biologic. If you’re not on Medicare, you can give the injection yourself via a pre-measured pen, but since Medicare thinks I’m old and decrepit and incapable, I have to go to an infusion center.
After the first injection, I stopped coughing. I only saw this allergist one time. When the nurse at the center told me that my prescription would run out in a couple of months, I called his office. No one answered the phone. There was no message. No message, no letter, no nothing.
I called Dr. Willers’s office to get a referral. I received no reply to the message I left, so I called the office again a week later and then the week after that, and finally spoke with the office manager.
“He closed his practice,” she said, “and has gone to work at the VA hospital.”
“What do I do?” I asked. “Could someone at your office refer me? My prescription is about to end.”
I don’t remember her exact explanation, but the answer was that you need to see your provider.
“I don’t have an appointment with Dr. Willers until two months after my prescription is null.”
I knew how difficult it was to get an appointment with the St. Thomas Pulmonary Clinic. I said, “I guess I’ll just miss a couple of months.”
She answered, “For your next appointment, you will see a new doctor. Dr. Willers has left our practice. Let me see who I put you with.”
I stood there looking both ways for Sunday. I’m sure my mouth was open.
“You will receive a letter this week,” she said. “Ah, here you are. You’re going to see Dr. Ashley Clark. Is that okay?”
“I guess so,” I said.
“And, I’ll put you on the list in case someone else cancels.”
I think I thanked her.
*
After a little over a year in the practice, Elizabeth Willers had left St. Thomas Pulmonary. She didn’t know where she was going, but the practice allowed her to compile an email list. I received the letter announcing her departure and also invited those who wished to stay in touch to send an email to a dedicated address. I sent a fun note, but I haven’t heard from her.
I think she was trying to make a decision about retirement.
“Meanwhile,” as Stephen Colbert says, I went to a routine checkup with my primary care doctor.
When I told Dr. B the story, she said, “Oh yeah, Dr. T went to the VA. I wonder why he did that. Well, we can get you a new allergist.”
She typed a little on her laptop, “Oh, let’s see if we can get Keegan. He’s not accepting new patients, but let me go to my office. I’ll call him.”
Dr. B re-entered the room, carrying her laptop. “We got him,” she said.
“They’ll call you and make the appointment.”
Yeah, I thought, they’ll call me.
Well, they did, and I saw him the following week. I talked to him about my prescription, and we talked about my asthma and the coughing. I was disappointed that he didn’t do something different for a biologic.
*
My new physician for breathing is Ashley Clark. I like her as much as I did Dr. Willers. She’s shared some laughs, especially about my journey to get a new set of Fasenra injections. I laughed with her, even though I told her it wasn’t funny.
I also asked her why the Fasenra didn’t seem to be working as well as it did the first few months.
“Maybe we should switch you to another biologic,” she said. “There are a bunch of them out there. I’m going to see if we can start you on Dupixent.”
*
Can you count the number of irritations in this story? I could, but it might join the “many things” I mentioned to the ASAP nurse.
Today, I’m irritated that it took me so long to write this epistle. There really is no need to add to my irritation list. The world is full of them these days.
***
On the Ravine 