I’m sitting in the exam room, waiting. Waiting is one of the most pervasive of human experiences. We wait, and we wait for something, so waiting has an air of expectancy. We wait for many things, and what one is waiting for colors the experience. A father-to-be waits for the delivery of a baby; a student waits for the results of an exam; a driver waits for a traffic light to change from red to green. The father-to-be is joyously expectant and probably nervous. The student may dread seeing the test grade. The driver may be bored or antsy depending upon the nature of the trip.

I’m waiting for the physician to enter the exam room. I expect the physician but the physician is just a messenger; what I’m really waiting for is a diagnosis.

I am nervous and feeling some dread because the diagnosis could be bad; but I’m also hopeful that it won’t be — that it will be something easily treated and that I’ll experience a return to health and normal activity.

Dr. Smith is a pulmonologist. I was referred to her by my primary care provider (PCP) and first saw her on February 19 of this year. (This visit is chronicled in an earlier post.) She examined me, ordered a high resolution CT scan (HRCT) and pulmonary function test (PFT), and referred me to a rheumatologist. I have the results from the rheumatologist (no disease or condition identified) and today Dr. Smith will tell me the results of the HRCT and PFT. These test results, along with the information she gathered previously, may lead to a diagnosis. I sincerely hope so; it’s been two years since I first sought medical attention for for my problems. It’s been a long road with many physicians, exams, blood tests, x-rays, and scans.

Dr. Smith enters the room after a shorter wait than I expected.
“Hello, Mr. Franklin. How are you today?”
“I’m nervous.” [slight grin] “How are you?”
“I’m doing well.”

She gives a slight pause with a slightly embarrassed look, as though she should not be feeling well.

She continues. “I have the results of the HRCT and PFT. The PFT shows that you have a definite decline in lung function. The HRCT has more information because it shows the lung tissue.”

Another short pause but no embarrassed look. Is this pause because she doesn’t want to continue? Is she considering what to say?

“The HRCT shows scarring in the lungs, as was reported in the CT scan last year. The HRCT shows more detail, and the scarring is clear.”

A little pause. The pauses are getting to me. I’m waiting, expecting a diagnosis, and the pauses draw out my waiting time and increase my anxiety.

She continues. “I’m sorry, but the HRCT clearly shows idiopathic pulmonary fibrosis (IPF).”

The pause this time is welcome. I need to get hold of this and try to get it solidly in my head before I can listen to whatever else Dr. Smith has to say.

And what she says needs to be heard but is hard to hear. “It’s a progressive disease. There’s no cure, and there’s very little treatment available.”

Another welcome pause. I probably have a “deer in the headlights look.” Or maybe a deer in the sights of a rifle, if the deer could see the rifle.

I look at her. “Last time you mentioned doing a lung biopsy. Should we …”

She shakes her head. “I don’t think a lung biopsy will give us any additional useful information. Let me show you the HRCT scan.” She turns her laptop around and clicks a few times. “Here’s the view of your lungs from the bottom up. See these lines? They are scar tissue. This pattern is called ‘honeycombing’. It is indicative of IPF and is definitive for a diagnosis. Your scan is textbook so I don’t think we need to do more tests; I think the diagnosis is certain. I’m sorry.”

She writes prescriptions for two medications which help my breathing, but she emphasizes that they do not treat IPF; they just help the remaining healthy lung tissue to function well. She says that later we will talk about two drugs which are available to treat IPF. “You need to think things over,” she says.

Yes, I do.