Lee has had a cough for over a year. It’s a niggling thing; it fades for a bit and then reappears. He’s been on antibiotics and inhalers. He’s been to urgent care, primary care, and a pulmonologist. Nobody knows what’s causing it. We’ve spent hours discussing possible allergens and reviewing his medical history and we don’t seem to be making any progress.
The latest referral was to a hospital we don’t typically use. We made the appointment, and I assumed we were all set until the secretary who called to confirm the appointment used the wrong name.
What? How did that happen? Everything is changed. Legally, medically… everything. It was a process, but we went to the county court for a name change and got all the right letters and documents and updated the social security information and the insurance information and all of the medical records. His passport and his driver’s license are both correct. I thought we were done with this. I was wrong.
Apparently, we had used a doctor affiliated with that hospital about a decade ago, pre-transition for Lee. The old information must’ve come up when we made the new appointment.
So… I made the call again. First to the hospital main line. Then they transferred me to Pulmonology, who transferred me to Patient Services who transferred me to Medical Records. Each time, I explained the situation. One hospital employee assured me that they made a note and would use his ‘preferred name.’ I took a deep breath and explained that she was misunderstanding me. There was no need to note a ‘preferred name.’ Lee is his LEGAL name. The old name shouldn’t appear anywhere. “Oh,” she seemed confused. “That’s strange. It’s in here as his preferred name.” I nearly groaned. “Yes. I know. That’s what I’m calling to fix.” She transferred my call again.
*****
The doctors scheduled a bronchoscopy. Lee would need to go under anesthesia, but the procedure itself should only take about ten minutes. We were both a little anxious, but eager to get some more information about what was going on.
A few days before the procedure, I got an intake phone call. “Is this the parent or guardian of Lee?” “Yes,” I replied. The woman on the phone talked me through the process. No food for 12 hours before the procedure. No water one hour before arrival. We would get to the hospital, check in at the front desk, and make our way to the fourth floor. He should wear his glasses instead of his contact lenses and remove all of his jewelry. It seemed pretty standard. “I do want to double check one thing,” I explained to the voice on the other end of the phone. “I want to make sure that the name is correct. I did speak to patient services and medical records, but if you could double check for me, I’d feel better knowing we’re really all set.” The woman told me that it was, and I breathed a sigh of relief.
And then she told me that they would collect a urine sample prior to the procedure, because they needed to run a standard pregnancy test.
I explained to her that pregnancy was impossible. That Lee had been on puberty blockers since the age of 12 and that he doesn’t have functioning reproductive organs. She apologized and told me that they still needed to run the test. “Can they just take the sample then? Without saying it’s for a pregnancy test?” I was imagining the defeated, devastated look on Lee’s face. I wanted to spare him the embarrassment. And the discomfort. And the dysphoria.
“Of course,” the woman replied. “No problem. I’ll make a note.” I breathed another sigh of relief and began to feel optimistic.
*****
The morning of the procedure, we drove into Boston, navigated the crowded streets and backed into a tiny spot in the packed parking garage with plenty of time to spare. Lee was already fantasizing about his post-procedure meal, because a 12 hour fast is an eternity for a 17 year old boy.
We checked in at the front desk as directed, and then made our way to the fourth floor. The receptionist was wearing rainbow colors on his lanyard and two tiny silver ♂ symbols on a silver chain around his neck. These visible statements of LGBTQ inclusivity were reassuring, and I relaxed a little more.
We sat in the waiting room, feeling a little anxious, and a friendly gentleman was tasked with walking us through the maze of the hospital to our next location. We walked a short distance to an elevator and traveled three floors down. A left turn, right turn, long walk. Right turn, quick left, another elevator. Four floors up. I was sure I’d never find my way back to the car.
We didn’t need to check in this time. We were walked directly to a cot behind a curtain in a line of cots behind curtains. A nurse approached. Leah? She asked. My heart dropped. “This is LEE,” I asserted, not masking the aggravation in my voice. “I was assured that the other name wouldn’t appear anywhere.” The nurse stammered a bit. “Oh, I’m so sorry. I misread. Mispronounced. I apologize.” I pushed back. “Is the name correct in the file?” “Oh, yes. It’s correct. I just mispronounced.” But the thing is, EVERY time a doctor or nurse or medical professional uses the wrong name, they try to correct by saying that they misread or mispronounced. Because the names are so close. So I didn’t let it go. “It’s not listed as ‘preferred name,’ is it? It’s the ONLY name in the file?” The nurses’ eyes widened and she looked around for backup. Another nurse came over and suggested that we move to a different space, because of the crying baby two curtains over. “We don’t want you to get a headache while you wait,” she explained.
They walked us a few yards through the open space to a room with walls and a door. I’m sure it had nothing to do with my raised voice and irritated questions. “I’m sorry. I know you’re just doing your job. But I have spent hours on the phone trying to fix the situation with the name. And the ONLY name that should appear in your files is Lee. Does another name appear?” The second nurse rolled her computer screen so I could take a look. “Here. Look. It’s just Lee. I’m sorry that happened, but it’s correct in the system.” I had to let it go. “Okay. Thanks. I hope you can understand my frustration.” “Of course,” she replied, unconvincingly.
By this point, I had noticed lots of the hospital staff with the progress pride colors on their ID lanyards. I also noticed that this nurse wore a plain black lanyard. I couldn’t help but wonder if that was a deliberate choice.
She asked all of the typical questions. “When’s your birthday?” “Any allergies?” I was happy to be in a room with walls, but the nurse kept the door wide open, and she stood partly in the hallway. “Do you get periods?” I did a double take. Seriously? With the door wide open? And I had already explained to the intake nurse on the phone that he doesn’t. And that they shouldn’t ask. I was angry, but I looked to Lee first. He seemed only mildly irritated when he answered, “no.” I took a deep breath and tried to calm myself.
And then she handed him a small plastic cup. “We’ll need to do a pregnancy test before the procedure, so this is for a urine sample.” I watched his eyes grow wide and then lower in shame. He couldn’t even look at her. I growled, “I was TOLD that you weren’t going to say that.” “I was just explaining to my patient why we need a urine sample,” she argued. I reiterated, “The intake nurse said that you could just TAKE the SAMPLE and you didn’t have to trigger him by saying WHY.” “Oh,” she looked back down at her notes. “I do see it here. It’s noted. I just hadn’t gotten to it yet.” She didn’t even apologize. She handed him the cup and gave him the directions and walked away.
I was FUMING. When she left, I had a whispered conversation with Lee. I apologized. I explained what happened. I ranted a little and told him I was going to write a complaint letter to the hospital administration. And I knew he was upset too, because he didn’t try to calm me down. He didn’t tell me I was overreacting. He just headed to the bathroom to take an unnecessary pregnancy test.
*****
From that point on, everything was fine. We waited longer than we expected, but the procedure and Lee’s recovery went well. He woke up, high on anesthesia, and I laughed at his inappropriate, unexpected comments while he ate three popsicles and slowly regained his motor function. We stopped for fast food on the way home.
At the follow up appointment, we got good news (no blockages, no infection) and bad news (we’re still not sure what’s happening, so we’re referring you to another department).
So we’re bracing for another round of medical drama, with new doctors and departments and sometimes great, supportive staff, and sometimes careless, callous staff. As if this whole thing weren’t hard enough already.