Post 15: Phantom Findings

As scary as they sound.

Photo by Ghavam Cheraghali on Unsplash

The photo shows a spirit in a black hooded robe. The face and arms can’t be seen. The bottom of the robe splays outward, as if the spirit is floating and turning. The dark, muted background shows a forest of trees with orange leaves, likely at dusk. The tone of the picture is foreboding.

There’s a glossary at the end of this post.

As June of 2018 wound down and summer temps soared, my symptoms worsened. I lamented the 7-week wait until my university health system (UHS) pulmonology appointment. In retrospect, I was privileged to receive a sarcoidosis diagnosis in just a few months. But they were the longest, most tortured months of my life.

After seeing a cardiologist that month, I’d also visited an electrophysiologist (Dr. T) at UHS. Dr. T had ordered my stress test. She’d also supervised the research study I’d participated in (which had revealed my dysrhythmias), so I had her phone number. Alone and overwhelmed, I left her a desperate message, begging for help. I missed her callback that evening, unarousable from one of my prolonged, stuporous slumbers.

Dr. T stammered in her voicemail message, belying her powerlessness to help me. She suggested I visit a local respiratory clinic. This simple gesture – calling a patient outside of business hours, sounding concerned – was the first instance of humanity I’d experienced in my diagnostic odyssey (there would be more throughout the years, restoring my shaken faith in medicine). Moreover, the clinic scheduled an appointment for the following week!

July 10, 2018: Respiratory Clinic Visit With Dr. Z, Pulmonologist

The purpose of this visit was to establish care so Dr. Z could biopsy the swollen lymph nodes in my lungs and confirm the sarcoidosis diagnosis (while ruling out tuberculosis or lymphoma). I completed PFTs that morning, which showed excellent pulmonary function.

Cheerful landscape paintings decorated the waiting room, which was full of coughing, haggard-looking older patients on oxygen. I felt out of place. What was I doing here with all these sick people? I’d figured being unwell was just a blip in my young and otherwise healthy, robust life. I’m ashamed to say this sentiment carried some underlying judgment: I wasn’t a chronically ill patient. I wasn’t one of them.

I filled out forms covering the usual suspects: histories (past medical, surgical, family and social), medications, environmental exposures and my extensive, multi-system ROS. After a few minutes, a petite MA led me to the exam room and took my vital signs before leaving.

Dr. Z entered, his spicy cologne diffusing to my nostrils before he was close enough to shake my hand. He nodded as I outlined my situation, skipping some ROS details I’d written on the forms. He listened to my lungs (the extent of his exam). When he began explaining the next steps in layperson’s terms, I mentioned I’d been a NP. His eyebrows arched in appreciation as he leaned back in his chair.

“So, you’re here for an EBUS. Why didn’t you just say so?” His smile was genuine. His arm swept toward the door as he got up to leave and said, “The scheduling desk is on the way out.”

I’m familiar with this shift in demeanor. It’s partly why I felt out-of-place here as a former NP and now, a reluctant patient. Switching from being the caregiver to the one who’s cared for triggers a cognitive dissonance that’s hard to overcome.

After Dr. Z learned I was part of (what I call) the Clinicians’ Club, he’d become more laid back. I would realize, when I read his note years later, a little too laid back.

ROS. Dr. Z accurately documented the following in the visit note’s HPI and ROS:

• “Fatigue/malaise

• Exercise intolerance

• Palpitations

• Headache

• Presyncope.”

But he omitted the following, which I’d checked or written on the form:

• “Visual changes

• Memory loss and reduced concentration

• Chest tightness

• Color changes on fingers

• Heat intolerance

• Sleep issues

• Urine smells strange (UA –)” (meaning my urinalysis was negative for any infection or abnormalities).

Dr. Z had also documented that I didn’t have some symptoms I’d checked:

• “Normal appetite” (mine was decreased)

• “No vision changes, hoarseness, nasal discharge, chest pain, palpitations, fainting, shortness of breath, cough, abdominal pain, anxiety, depression, muscle weakness, headache, fainting and falls.”

He’d even listed some of these in the HPI, causing discrepancies.

History. Dr. Z’s note claimed:

• “The patient’s past medical … surgical … family … social … and environmental history [were] reviewed, and there are no updates since their last visit.”

These items weren’t reviewed and this was my first visit. He only asked if I was a smoker (which I wasn’t). He’d obviously read neither the forms I’d filled out, nor the forwarded UHS MRs.

Physical Exam. Dr. Z falsely documented a normal exam including:

• “Neck – no masses

• Percussion … [and] palpation of chest

• Rate and rhythm … S1 and S2 … no murmurs

• Pedal pulses: 2+ bilaterally

• Abdomen: Non-tender, no masses … No hepatomegaly or splenomegaly

• Gait and muscle strength/tone

• Skin turgor

• Palpation of lymph nodes in neck … axillae … groin … [and] other areas: No lymphadenopathy.”

Scattered throughout the body, lymph nodes play an important role in immunity. Since sarcoidosis is immune-mediated, a comprehensive lymph node assessment is especially important in patients with this suspected diagnosis. My groin lymph nodes are palpable, which would’ve been documented had he done the exam.

Further, a male physician who performed this exam on a female patient (as well as chest percussion and palpation) would’ve had a female nurse in the room as a chaperone. There was no chaperone documented, because there was no chaperone, because the exams weren’t performed. Instead, these, and most of Dr. Z’s note, comprised phantom findings.

Phantom Findings

After years of chronic illness and countless hours reviewing MRs, I’ve concluded phantom findings are common. But at the time, I was blissfully ignorant that my MRs at UHS and the respiratory clinic were fraught with flawed and missing info. Add the biases based on my stress test, PFT findings and Clinician Club membership, and you get a perfect storm of mostly useless patient info. Perhaps most chilling is the realization that, if phantom findings were in my notes, they were likely in others’ as well.

Have phantom findings popped up in your medical records?

Glossary

Dysrhythmia – Abnormal heart rhythm.

EBUS – Endobronchial ultrasound. Involves snaking a bronchoscope with a camera into the lungs. The scope can also biopsy swollen lymph nodes through the tracheal wall with a fine needle aspiration.

HPI – History of present illness.

Hepatomegaly – Enlarged liver.

Lymphadenopathy – Abnormal swelling of lymph nodes.

MA – Medical assistant.

MD – Doctor of Medicine.

NP – Nurse practitioner.

PFTs – Pulmonary function testing.

Pedal pulses 2+ bilaterally – Both the pulses on the top of my feet felt normal.

ROS – Review of systems. Symptom list.

S1 and S2 – Heart sounds. S1 is caused by the closing of the mitral and tricuspid valves. S2 is caused by the closing of the aortic and pulmonic valves.

Splenomegaly – Enlarged spleen.