How I Learned to Stop Worrying and Love the Patient Portal

When COVID struck Rebecca Saltzman’s family, the virus unmasked a life-changing discovery: her husband and two of their kids had genetic heart disease. The kind where people drop dead. As their healthy wife and mother, Saltzman had a new role too—guiding her family through what Susan Sontag called the Kingdom of the Sick. In this column, she’ll explore the anthropological strangeness of this new place, the mysteries of the body, and how facing death distills life into its purest form: funny, terrifying, and sublime.

Read Part I, Part II, Part III, Part IV, Part V, Part VI, and Part VII.

The morning that my husband was switched off and rebooted, I was busy having a toxic emotional affair with MyChart.

If you’ve spent any time in the Kingdom of the Sick over the last decade, you’ve probably encountered MyChart, or one of its competitors, often referred to as the “Patient Portal.” The Portal connects you to the least magical of realms, one where you become a person who fixates over the precise meaning of lab values and medical jargon.

During Josh’s first hospitalization, I had discovered that he was not the most reliable narrator. “What did the electrophysiologist say?” I would ask, and receive an answer not unlike the kind you get when you ask a child what they learned at school that day. But MyChart lets you access medical records right from your phone in real time. As soon as a result is uploaded to the system, it pops up in your app. This meant that by allowing / forcing Josh to add me to his MyChart as a proxy, I could spy on him from home by constantly refreshing the app.

This is supposed to be “empowering,” a term that appears in bold letters on the MyChart homepage. But for me, MyChart was less empowering than “enabling.” By the morning of Josh’s surgery, I was a MyChart expert/addict, firmly possessed by the app, where I spent hours indulging the worst sides of my anxious personality. It’s good for you, whispered the app. You can’t trust anyone but me.

While I was refreshing the app for news, Josh was having a better morning, because he was unconscious.

The plan was that Josh would have his chest sawed in half by Dr. T, the world expert in aortic procedures (Dr. T’s former colleague was Mehmet “Crudité” Oz, whose photos and news articles still hung in their office). After unzipping Josh’s sternum, Dr. T would then either replace or repair Josh’s faulty aortic valve and fix his aortic aneurysm. Anything could go wrong.

To do the surgery, Dr. T would have to stop Josh’s heart. A bypass machine would keep his blood oxygenated and pumping during the surgery. He would be neither in this world nor admitted to the next, but suspended in the place between. A cosmic DMV, where you waited to see which teller called your number: Death or Life.

I don’t remember what I did that morning—I must have gotten our kids ready for school and dropped them off—except that I alternated between sitting on the couch and sitting at the table, my mom and my friend Mindy sitting with me, as I anxiously, compulsively, refreshed MyChart for news. Nothing had been updated since 6:41 a.m.

The one downside of MyChart, in addition to all of its other downsides, is that when it updates in real-time, you often get medical results from a soulless piece of technology instead of a human person. A friend of mine learned she had cancer from reading her MyChart. So if Josh died during surgery, there was a real chance I would first find out from the cheerful graphic minimalism of the Portal.

At 1:09 p.m. A new result popped up: “Op Note.”

“Oh my god,” I said, jamming my finger against the screen frantically. A dense wall of words appeared, the difficult and confusing language of Sickland.

“Do you want me to read it for you?” Mindy offered. She worked in health care. But I had to read it for myself.

I scrolled faster. The patient was taken to ICU in stable condition. The patient was taken to ICU in stable condition!

“He’s okay!” I announced. “No complications!”

My mom went to the fridge and came back with a bottle of champagne.

There is, simply, no way to prepare for the cardiac ICU.

“This is… intense,” Mindy whispered as we stood outside Josh’s room. We could see him through the glass, hooked up to oxygen and drainage tubes and more IV lines than I could count. In the cardiac ICU, a person’s life is so precarious that they have 1:1 nursing care. Josh didn’t look like himself. I don’t mean physically. I mean something in the eyes, or the soul. A person who has passed through the inbetween place takes time to reacclimate to living.

The nurse told us we could go into the room. I didn’t want to. I’m ashamed to say that I wanted to run, that for a moment, I reasoned with myself that he wouldn’t know the difference anyway. If Mindy hadn’t been with me, I might have done so.

But we went in. The nurse said he had been asking for me, and I was relieved to find that he did know who I was.

Later I went to the restroom and Josh, high on the top-of-the-line painkiller Dilaudid, turned to Mindy.

“I’m worried I’m not good in bed,” he told her.

“I’m sure you’re fine,” she said. He has no memory of this conversation.

Josh’s valve surgery had gone as well as possible—Dr. T was able to repair his valve instead of replacing it with a pig valve. This is generally considered the better option medically, though not comedically. I had planned to make many jokes about my human-bacon-hybrid husband. Life is full of disappointments.

The day after surgery, Josh graduated from ICU to the stepdown unit, and was soon sitting up on his own and taking his first steps with the physical therapy. With his long hair and beard, and his flowing hospital gown that revealed the raw incision that ran the entire length of his chest, Josh looked like Congenital Heart Disease Jesus.

I kept up with his MyChart, even reading it when I was sitting by his bedside. Congenital Heart Disease Jesus, who was still high on Dilaudid, gave cheerful quotes that were recorded there for eternity, or until the collapse of America’s privatized healthcare system, whichever comes first:

Patient Report/Complaints: “It feels so fantastic to be standing.”
Patient Stated Goals: “To walk the perimeter of Central Park again.”

I dwelled on his lab numbers, which were all out of whack. It turns out the body doesn’t like being cut open and brought to the very brink of death. I questioned why MyChart said both that he was to “avoid QT prolonging drugs,” and also that he was being given Zofran, a known QT prolonger.

“It’s fine,” his medical team said.

Josh and I walked the perimeter of the stepdown unit together—not quite Central Park, but impressive for someone who had, only days earlier, been technically dead. His body grew stronger. His lab numbers stabilized. Iris visited and styled his hair.

Open-heart surgery seems like the kind of thing where you’d be in the hospital for a long time, so I was surprised and skeptical when Josh was discharged five days post-op. He was still in near-constant pain, but everyone seemed to think it was normal, and who were we to say otherwise? “Maybe you’re just afraid of going home,” one nurse suggested. He wasn’t, so we got into a taxi, speeding past the many bridges of Manhattan. Josh cradled a large red heart-shaped pillow, holding it against his chest as he coughed.

At home, his cough grew worse. He pressed the pillow to his chest, to stabilize his sternum while he coughed (after open-heart surgery, your sternum is considered broken for a year). His pain grew worse, too, especially if he lay down. So we spent the whole night sitting on the couch.

“It sounds fine,” the hospital discharge nurse told me the next morning. “Try giving him some Ayr for the cough.”

By now, my mom and Mindy had returned to their homes in other cities, so I was alone with Josh and our kids, who were banished to their rooms with a stomach bug. He shouldn’t be home, something is wrong, my gut said. But my brain second-guessed my gut, as brains often do. Of course recovering from surgery is hard. Don’t the doctors who discharged him know better than you?

It turned out they didn’t. After several more arduous days at home, trying to treat his worsening cough with steamy showers and a friend’s nebulizer, Josh spiked a fever. A fever after major heart surgery is an instant ticket back to the ER.

In the emergency department, I ran back to the arms of my old paramour, MyChart. I opened up Josh’s EKG that had just been performed. His long QT was longer than it had ever been—over five hundred milliseconds, which is considered the danger zone for serious arrhythmia risk.

“Oh yeah, that is long,” said the attending cardiologist, when I pointed it out to him. “Maybe it’s the Zofran.”

The same Zofran I had questioned and been told was fine?

“I’ll make a note in his chart,” the doctor added.

I told you, whispered MyChart. I’m the only one who will be honest with you.

After another five days in the hospital, Josh was discharged again. His pain, cough, and fever, they determined, were caused by post-pericardiotomy syndrome—inflammation triggered by surgery. My gut, once again, had been right.

This time he seemed ready to go home. We got into another cab, Josh still carrying his heart pillow.

His valve was repaired. His arrhythmias were under control, and he had a defibrillator just in case. Without modern medicine, he would have died at thirty-nine, and I would have been widowed, raising our children alone. But now he had a second life opening up before him. In the car, I put my hand over his. A second life for us, together.

And MyChart would be there too.