Recently I've been having physical therapy for my neck, and between myself and my physical therapist, two of us who are both clinicians, we exchanged stories about being on the receiving end of healthcare. The receiving end.
She said that sometimes our patients don't actually understand our point of view.
"Of course they don't," I said to her. "Since in most cases very few of us had any understanding of theirs at the beginning."
My empathy never began when I became a nurse practitioner; it went back years before that, when I was only just finishing my training in nursing and was pregnant with my first child — at a time when things were far from going well.
I never even showed. My mother and mother-in-law both thought something was wrong. I kept bringing it up to my obstetrician, who kept telling me I was just thin and athletic. My husband and I took a belated honeymoon — he'd been in the police academy when we married — and I was seven months pregnant in a bikini, still barely showing. Just a thickened waistline.
On the flight home, my legs started swelling badly. I took a day off before my first shift back at the hospital to keep them elevated. It didn't help. The next day, my legs were swelling again, my hands were swollen — thank goodness I'd taken my wedding ring off before work — and I had a horrible headache.
It was a busy shift on med-surg, so I pushed through, even as my colleagues kept saying:
Come on, Deb. Let us check your blood pressure.
When my shift finally ended, I let them check it: 170/110.
Learning to Advocate for Myself
My nurse colleagues got me down to labor and delivery and put me on a fetal monitor. I was in premature labor. I had severe preeclampsia — blood pressure high enough to threaten seizures — and the ultrasound showed almost no amniotic fluid left.
I was rushed from Santa Barbara to UCLA, put on a magnesium drip to prevent seizures. No medic was sent with me who could actually manage my IV. I was the RN. So I managed it myself.
At UCLA I was given dexamethasone to help the baby's lungs mature faster. My amniotic sac ruptured. I developed chorioamnionitis. After eleven days, they couldn't hold the baby back any longer. My first child was born at 31 weeks — two and a half pounds, a good two pounds underweight — with ambiguous genitalia. That's a story for another day.
I told my husband: leave me, follow the baby, don't leave that baby's side for a second.
UCLA has 22 miles of corridors. We lost patients in that maze all the time — I knew, because I'd trained and worked there.
Between my own fever and the chorioamnionitis, I couldn't be with my baby those first hours. And then, within 48 hours of delivery, all my symptoms came roaring back: the headache, the rising blood pressure. I knew a seizure was coming.
I told the nurse. She got a resident, who stood there holding a textbook and told me: "I don't understand what's going on. This isn't supposed to happen — the books say toxemia is cured by delivery."
I told him I didn't care what the books said. I was having the same symptoms, plus elevated liver enzymes and worsening kidney function, and I needed an anticonvulsant.
He didn't give me one. I seized.
That's the moment preeclampsia becomes eclampsia.
What I didn't know then — what the resident with his textbook didn't know either — is that preeclampsia and its severe variants can appear or worsen after delivery. Roughly a third of HELLP syndrome cases present postpartum, and symptoms may not surface for as long as a full week. As the Preeclampsia Foundation puts it: delivery is not the cure.
He was repeating what his book said. The book was incomplete. And I was the one who paid for the gap between them.
Why I Became a Medical Detective
I still don't know how patients advocate for themselves without any medical training. That's a big part of why I became a nurse practitioner — to educate my patients, advocate for them, and teach them to advocate for themselves.
A year and a half ago, my collaborating physician died suddenly, and at the time, under California law, I could no longer practice as a nurse practitioner without one. I was ready to step back from patient care anyway, and shifted into something I'd been circling for years: medical detective consults.
In a recent podcast interview I was giving an account of the way in which I work backwards from hypothalamic dysfunction — on occasion all the way back to a patient's childhood — the interviewer interrupted me to say that "you're like a medical detective."
I laughed and said, "That's precisely what I refer to myself as."
I'm still taking consults. If you've been to specialist after specialist and no one can find what's wrong — if you've been fighting the same unresolved symptoms for years with nothing addressing the root cause — that's the work I do.
If that’s you, you can book a one-on-one medical detective consult here.
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