I am well. For the first time since May 5, 2019, I am not a hospital patient.
A healthy patient
Before our 2019 transatlantic cruise to Europe, I considered myself our doctor’s most boring patient. I was a fitness instructor. Apart from having our daughter nearly 30 years ago, I’d never been hospitalized, and I had none of the diseases that creep in as we age. My husband has not been quite as lucky, but he was cleared to travel.
Off we went on our two-week journey across the pond from Florida to Amsterdam, with one additional roundtrip week from Amsterdam to Norway tacked on. We had booked an apartment in Amsterdam’s canal district for a month to end our trip on solid ground in one of our favorite cities.
Three months in the hospital: May 5 to August 9
Saying that I was a boring patient was simply too tempting for The Fates to let lie, but they did give me a chance to make it.
In the single day we were in Amsterdam, I was felled by a ruptured arterial aneurysm, and my heart stopped as I was wheeled into the OLVG Hospital emergency room. They got me back and quickly sealed the leak, but my body struggled to keep going for nearly six weeks in the ICU, leaving me wasted and weak. It took me another six weeks to recover my ability to move and the strength to survive a flight home. I was transferred to a Florida hospital with the savvy to take over my treatment, the University of Florida’s Shands Hospital, where I was an inpatient for a week before being discharged to return home. Tomorrow is the second anniversary of that wonderful re-entry into our palm-and -lake-laden neighborhood.
But hanging over my head was Amsterdam’s diagnosis: the ruptured aneurysm had been surrounded by other aneurysms, symptoms of an extremely rare vascular disease: segmental arterial mediolysis. According to the Mayo Clinic (Jacksonville FL), SAM carries a mortality rate of 50 percent. If the SAM diagnosis was correct, I’d need to be carefully monitored by all-too-rare specialists for the rest of my life. Although Shands was five hours from home, I needed to remain their patient. Maybe forever.
One-month check up: August, 2019
On our return, Shands identified a pseudo aneurysm near my ER incision and fixed it while I tried not to hyperventilate. God bless the nurse who understood what was going on in my head. She stood right next to me chatting about children and dance lessons, keeping me distracted while the rest of the team worked away.
Four-month check up: November, 2019
This time, there was nothing to see. Apart from the evidence of the clamped tear, my blood vessels looked healthy. No aneurysms. Not even any pseudos.
One-year check up: virtual, 2020
It was out of the question to travel to Shands as the pandemic raged. Instead, I ventured to a local facility for the scan, and Shands had a look. Still healthy. No aneurysms.
Six months out from my May 5 burst arterial aneurysm, I recently headed up to Shands Hospital in Gainesville for a check-up. After all, my Amsterdam doctors had attributed the near-fatal bleed to Segmental Arterial Mediolysis (SAM), a disease so rare that no one can yet say how it all turns out. I might have another unexpected burst anytime. It might go away on its own. Maybe there were surgeries ahead. I felt good, but I had also been feeling fine before fainting and nearly dying in Amsterdam.
I had other concerns I wanted Shands to address, the most pressing of these being getting myself off the blood thinner Warfarin, an old-fashioned standard when addressing pulmonary embolisms as appeared in my body. The daily required bloodwork of Amsterdam has trickled to a weekly lab jab, manageable but not my preference, but staying away from leafy green vegetables (loaded with Vitamin K, a leaf of spinach can throw off the efficiency of Warfarin) has really cramped my salad style and dulled my dinner plate. A recent bone density test revealed, for the first time, some bone loss: lying on your backside for three months can do that, but losing Vitamin K at the same time has probably increased the damage.
My primary doctor had armed me with blood work on various clotting factors from which Shands could draw a conclusion.
So, up the Florida Turnpike we drove on Thursday afternoon, our frequent pit stops (age and illness have us pretty needy) extending the four-hour drive to five.
The two-lane Turnpike was intended to be the Less Stressway alternative to multiple-lane Interstate 95, but its promotion has attracted so much traffic, including the big rigs, that two lanes are insufficient. Within the first 30 minutes, we narrowly avoided being slammed into by a truck and a car jockeying for the same lane. The eye-popping drive had us both exhausted by the time we arrived in Gainesville.
Florida’s Turnpike strives to maintain a strong level of communication with its customers in order to make their experience with us more useful and efficient.
Here’s a strong level of communication: Hey! A third lane might keep us alive long enough to get to the hospital.
My appointments at Shands were scheduled for the following morning, so we headed directly to the hotel, a beautiful new La Quinta, a brand we were familiar with from our days plying I-95 between New York and Florida with dogs in the car. We’d agreed to bring home Victoria’s black lab, Pancho, in advance of her Thanksgiving travel plans north.
The hotel was bright and spanking new, an oasis of light in the dimming evening. It was also NOT our hotel, the very pleasant and apologetic clerk told me. The original La Quinta, now a Day’s Inn, was where the online broker had booked us, but luckily it was literally right behind the new highrise.
We repacked ourselves into the car, drove around the corner, and … there was a Chinese restaurant but where was the hotel? Finally, an old La Quinta sign confirmed that our reservation was in a dingy three-floor walkup, barely lit, its entrance blocked by construction equipment. Hell, no. I got us out of the commitment with some excellent Spanish (Gracias, Luis!) and we drove back around the corner to the Good Place. Allelulia. And we had the best Chinese dinner since New York City’s Chinatown at the oddly empty Mr. Han’s Restaurant and Night Club which lived up to its Yelpings: “You’ll think you stepped onto a movie set!” And what a fortune in my after-dinner cookie!
So, on to Shands the next morning. I had an imaging appointment, followed by an appointment with the vascular doctors. Victoria, who is completing her doctorate in Clinical Psychology at the hospital, met us just before I went in for the imaging work. She’s making a difference in the lives of patients and their families every day. What some of us would find depressing she finds inspiring. God bless this wonderful young woman!
I couldn’t help but take a picture of the child-sized blood pressure cuff, as this was what the Amsterdam nurses had to use on my skinny arms during my long recovery there. No more. My arms were now lifting weights, pushing through water resistance, and I had walked a mile on the hotel treadmill that morning.
My ultrasound was confined to the area in which Shands had treated a “pseudo” aneurysm in my hip area at the end of August. I was pretty confident that the problem — in the area the Amsterdam ER doctors had inserted the probe to seal the original rupture — had been resolved.
The vascular surgeon, who had last seen me in early August, didn’t lead with those results when he came into the room. Instead, he complimented me.
“You look great. You’ve really improved. You’re making your way back.”
“Yes,” I said. “I have done my part.” And now you are supposed to do your part.
“The pseudo aneurysm is gone.” He handed me the two-page report without looking at it.
“Okay. Good. And what do you think about the clotting issue. Can I get off Warfarin?”
He shrugged. “We don’t have the expertise to advise you on that. You should get a hemotologist on that.”
“Right,” I said. “Just wanted to be sure you guys weren’t needing to be part of that conversation.” Glad to have cleared that up, we’ll handle it at home.
“Hey, we’re really just plumbers. But, as to the health of the rest of your arteries,we should get a CT scan. Maybe we can get that done next week.”
Victoria broke in. “You know, they live five hours away and came here specifically for this. Can’t you get it done today?”
Did I tell you that she took charge in Amsterdam? And that her excellent relationship with the doctors there continued long after she flew home?
The answer was yes. They got me in that afternoon, though it was nearly dark by the time we got back to the hotel. The doctor assured me they’d call me with the results the following week. I warmed up my leftover mu shu for dinner.
We spent Saturday with Victoria and her boyfriend Christian. Birthday Breakfast — an Amerson family tradition born of my parents’ frequent evening Embassy responsibilities — kicked off my 65th birthday week, along with a pair of gorgeous earrings found in Cancún when V and C escaped ahead of Dorian.
I sailed up the steps to Victoria’s third-floor walk-up Sunday morning, nailing yet another goal. We drove home with Pancho. The Turnpike wasn’t as scary as during our drive up, but the travel still knocked us out. I waited to hear from Shands.
But, first, Ray and I had a birthday lunch date on Tuesday at the Dune Deck Cafe with my sister, Susan, and my brother-in-law, Michael, during a short FL visit. We’d last seen each other in the Amsterdam ICU, so it was a warm and loving reunion, complete with a beautiful necklace (and the package ribbon ready to tie up in my hair)! I’m looking forward to visiting Susan and Michael in their new Colorado home next summer.
Wednesday. Got the hematologist working on the Warfarin issue but still no news from Shands. I left a voice mail, feeling a little sorry for myself. My days as the starring patient seemed long past.
My actual 65th birthday arrived on Thursday with a perfectly festive crepe-paper decorated breakfast of Boston Creme donuts and a fancy new crown. And we capped off the week’s celebration with dinner at Bimini Twist in the company of new neighbors Carol and Pierre, toasting Carol’s coming birthday as well.
My phone rang at 8:51 Friday morning, showing an Atlanta number. I normally don’t answer calls that are likely robo-marketing, but I thought there was a chance a Shands doc was using a personal cell phone. I picked up.
“It looks perfect,” the doctor said. No aneurysms. No need for further tests, interventions, hospitalizations. Another look in 6 months, or maybe even one year.
SAM was silent.
“You can get back to living,” the doctor said.
And that’s when I realized that I’ve been “getting back to living” since I woke up in the ICU. Relearning how to use my body. Refueling. Restabilizing. Regrowing. Restrengthening. Moving forward.
It was great to get the good news, but I hadn’t been waiting for anyone’s pronouncement to get on with living.