A MEMBER OF FISHAWACK HEALTH A tension exists between what it means to be human and how it feels to be a patient. Touchpoint captures the instant health industry professionals received their own health diagnosis, and how being a patient brought a new facet of humanity into their work.
It’s 5:30 a.m. Monday, but the routine is ingrained in his brain–one could say taking up the space where the tumor was.
He shuffles out of bed and into the bathroom to shower, then applies testosterone gel to his shoulders. While it dries he takes his hydrocortisone; takes his levothyroxine; double-checks his pill container to make sure it has his second dose of hydrocortisone and dose of cabergoline. Proceeds to get dressed and head into the office.
It’s the routine. It’s his life.
Frank Jaskulke, vice president of intelligence for the Medical Alley Association, was diagnosed with prolactinoma in October 2016.
Coming back from a work trip–seated in the window seat, Jaskulke looked out to see four engines instead of two. He went to an optometrist, then an ophthalmologist, which led to an MRI and ultimately a referral to the Mayo Clinic in Rochester, Minnesota. He went from having no idea what was happening to having a radiologist, neurosurgeon, endocrinologist–and a new identity.
“Once I got the diagnosis, all of a sudden, I was sick. And people treat you differently; now you’re a patient. ”
While not life-threatening, the prolactinoma flattened his pituitary gland “like a pancake,” resulting in fatigue, mood changes and ceaseless forgetfulness.
“Hormones control your mood and emotions, and my imbalance meant I was a mess. It was hard to interact–hard to work,” Jaskulke said.
“Our association does more than ten thousand referrals a year. If I do my job well, more people will benefit from more innovations more quickly,” he said. “I knew my work helped patients, but always felt two or three steps removed until I became the actual patient.”
“They roll you into the operating theater–it was a room filled with products developed in Minnesota. Medtronic, Ecolab, 3M–and I was being treated at the Mayo Clinic. I remember thinking all the work I do, this is ultimately what the people I work with do.”
After three months’ medication failed to shrink the tumor, surgery was scheduled. The tumor was removed in 70 minutes. The overall procedure and follow-up appointments took a day and a half.
His first words out of surgery were, “How do I look?” which Jaskulke doesn’t remember saying, but the extremely cold room, achingly bright lights and bitter aftertaste of medicine are seared in his mind.
“A lot of great doctors and nurses made my procedure smoother and more comfortable for me,” he said. “Everything they say about the Mayo Clinic doing things differently is true–from the art in the buildings to the team taking care of you, you feel it. The softer side of care was there.”
As time went by, Jaskulke noticed invisible scars that became more invasive than his surgery. Things like having to wear a MedicAlert bracelet–I need cortisol–every day. Work travel that used to be simple now involved a checklist of what prescriptions were permitted through which customs, or whether a permit was needed in advance.
“Why can’t you get a medical bill that makes any sense? Why, if I get a referral, can’t my files be automatically shared instead of me having to repeatedly fill out medical history forms? Why are hospital gowns so crappy, yet never seem to change into something better for the patient? Why can’t all my prescriptions be filled at the same time, instead of requiring multiple trips to the pharmacy?” he said.
“All these little things stack up to becoming a burden on your health, despite it being the stuff that keeps you alive. Now, being a patient, it impresses upon me that our voices are a big deal.”
After a year, Jaskulke’s prior authorization for testosterone was unexpectedly declined. It took five months of mixed information, failed appeals and resubmissions before he was able to get it covered again.
“I’m educated about the system, but I didn’t understand why I suddenly had to prove that I was ‘still sick.’ Or why I had to provide more blood work and fill out more paperwork,” he said. “It took being forced off my medication to truly know what it was like to be a patient.”
“I’d never felt so stripped of what it meant to be treated like a person. ”
The earliest attempts at pituitary transsphenoidal surgery–removing the tumor by going up through the nose–took place in the 1800s; the first documented successful procedure was in 1906.
“As an industry, we’re really good at making things–got a tumor? Here’s a knife, cut it out. There’s so little for everything after that,” Jaskulke said. “Continued innovation matters, even in areas where you know people have been doing it for years.”
“All it would have taken was a notification in an already existing app to let me know I should renew my bloodwork. That would have saved me months of confusion, and pain. Whether it’s the latest wearable or the oldest treatment in the book–the health industry needs to do better by people.”