As dentists, we pride ourselves in our tough immune systems and our ability to work through pain and minor illness. But sometimes we find ourselves in the position of receiving care instead of providing it. The experience of being a patient with an unusual disease is both eye-opening and humbling.
Dr. Julie Kellogg
Chair, WSDA News Editorial Advisory Board
As dentists, we pride ourselves in our tough immune systems and our ability to work through pain and minor illness. But sometimes we find ourselves in the position of receiving care instead of providing it. The experience of being a patient with an unusual disease is both eye-opening and humbling.
On Friday, May 14, I stepped into the office seemingly healthy and excited. By 10 a.m., I started feeling lethargic and I couldn’t think clearly. That night I developed horrible chills.
On Saturday, it became difficult to talk without coughing, and by afternoon my fever spiked close to 103. Thus began daily cycles of debilitating temperature spikes from 97-104. I couldn’t sleep and I coughed constantly. Walking to the bathroom or kitchen felt like a half marathon. My speech was staccato and labored and my head felt like a chef’s knife was being thrust into my brain every five seconds. On the eighth day, after another tortured night, I laid in my dark bedroom and cried with exhaustion.
Despite two negative Covid-19 tests, the primary and urgent care options for a patient with cough and fever are limited. A good friend who is a physician assistant finally insisted it was time to go to the ER.
In the waiting room of the ER, she held up the back of my head with her hand while I kept a wet washcloth over my face to cool the fever and block the light. Having someone take the lead and lend a steady hand brought unbelievable comfort.
When the ER doc examined me, he said, “I’m really glad you came here today.” Those words were reassuring in the moment of crisis. I received a battery of tests and images, IV fluids, and a differential diagnosis list.
For the next week, test after test came back negative, and discouragement set in. I developed lymphadenopathy and secondary tonsillar abscesses. On day 16, when the fevers finally abated, I received a positive test result for coccidioidomycosis, or Valley Fever. But none of my providers seemed confident if antifungal medications were indicated.
It would take another frustrating 10 days of feeling poorly before the referral trail led me to an infectious disease specialist. He confirmed that I did have Valley Fever, and my continued symptoms were not complications but rather autoimmune activity.
In total, I was off work for over a month. Recovery continues slowly. I still struggle with fatigue, body pain, and brain fog.
Reflecting on my experience, here are six recommendations for patients and healthcare professionals:
For patients:
- Find an advocate. Ask a friend or family member to be a healthcare advocate for you in the case of illness or medical treatment. This advocate is a second set of eyes and ears and assists in evaluating your options and making decisions.
- Be nice and be persistent. Navigating the medical system when you don’t feel good is frustrating, and you need to be nice and persist to get the right care. Ask about expected timelines. I found it helpful to utilize the chart apps to view test results and communicate directly with providers.
- Make a recovery plan. Our medical system does acute care well — then often leaves the patient on their own. It was up to me to figure out how to treat my lingering symptoms, rebuild my deconditioned body, and ease back into work.
For medical professionals:
- Patients want to be heard. As patients it often feels that our story, our symptoms, and the big picture aren’t heard in the rush to make a diagnosis or provide treatment options. Pull up your chair, close your computer, look in your patient’s eyes, and really listen.
- Touch is powerful. The touch of the human hand is meaningful. Even if the diagnosis is obvious, put on your gloves and perform a thorough exam.
- Offer reassurance. When the ER doc said he was glad I came in, that provided me a lot of reassurance that I made the right decision.
In the end, I am deeply grateful to my friends and family who cared for me and encouraged me every day. Small acts of kindness really do go a long way, especially when you are sick.
This editorial originally appeared in the Fall 2021 issue of WSDA News.
The views expressed in all WSDA publications are those of the individual authors and do not necessarily reflect the official positions or policies of the WSDA.