Ways to Endure, Part 6

In June 2013, one month after Pat’s surgery at Johns Hopkins Hospital, I helped her fill out a questionnaire from the life insurance company administering her monthly disability checks. Responding to “Please describe your current medical condition and any progress you have made since you stopped working,” she wrote “I’m recovering from my fourth open-heart surgery in the past four years. I have Loeys-Dietz Syndrome. Progress? I’m still alive.” When prompted to “List all medical conditions for which you treat with a medical provider and describe how they impair your ability to function,” she wrote “Multiple aneurysms that limit my ability to lift and exercise, emphysema that limits lung functions, esophageal strictures that limit my ability to eat, osteoarthritis that limits joint movement, and left vocal cord paralysis that limits my ability to yell at people about all this.”

That litany of ills would seem enough to make the most stalwart person blanch and retire to their bed, but not Pat. Later that month, we drove to Franklin, Tennessee, her oxygen concentrator in tow, to help celebrate the wedding of our niece Elizabeth. Even though it wasn’t easy being on her own, Pat was determined to not hold me back. In February, I’d applied for a week-long National Endowment for the Humanities Landmark Workshop. When I learned in April that I was one of the thirty K-12 teachers selected, I thought about turning down the invitation, but Pat would have none of it. She made sure I got the chance that July to study the many stunning examples of Chicago School architecture in the Loop, which became invaluable when I led tours during our annual U.S. Humanities class field trip to Chicago.[1] When I called her each night, I’d start with “Hi, honey. How ya doing?” She’d reply, “Oh, just fine,” but I knew that wasn’t entirely true.

After her post-surgical follow-up appointment with her primary care doctor in August, he wrote this instruction: “Look for little ways to help someone or make a difference in the world for the better.” In light of the meager hand Pat had been dealt, healthwise, this seemed glib advice, but Pat took it to heart. She had already begun collaborating with Alexander, a young Quebecois from Montreal whom she’d met at the Loeys-Dietz Syndrome Foundation conference the previous year, to write and edit pieces for the foundation’s website about living with LDS.

And she never let her illness get in the way of mothering – or grandmothering. In late August, Emma flew from Richmond, Virginia, for a baby shower hosted by her Iowa City friends. Pat and I were thrilled, full of joy and anticipation of our first grandchild. When Oscar Lynn Duer was born on November 9, Pat hopped on the first plane to Richmond to help Emma and Zach care for him. Other than a week in early December, when she took a train to New York City to visit Sierra and Tina, Pat stayed in Richmond through Christmas, lending a hand. 

Oscar was a goofy little guy. His first facial expressions were either wide-eyed amazement at the world or an alert focused look, the tip of his tongue sticking out, as he began to figure out that world. He then developed a great belly laugh, as he began to realize how funny the world could be. It goes without saying that Pat was head over heels in love with him, and the two became the best of friends.

When my high school let out for winter break, Jesse and I flew to Richmond to meet Oscar and spend Christmas with the rest of the family. I soon realized Pat was not doing well. That week she began coughing up blood-tinged sputum, doing a fairly good job of hiding it, but I couldn’t miss the tissues streaked with blood in the wastebasket by our bed. Was it bronchitis? Was it something related to her esophageal strictures or laryngeal nerve injury? In late August, she’d been seen by a UI Hospitals otolaryngologist who used an endoscope to get a close look at how her vocal cords were functioning. He had recommended a low-risk surgical procedure that might correct the vocal cord paralysis.

The day after we flew back to Iowa City, December 31, Pat had a follow-up appointment with that ENT doctor. While performing a laryngoscopy, he noted blood below the vocal cords and sent her to the pulmonary clinic for evaluation. CT scans showed an expanding hematoma (blood clot) around the aorta at the site of her most recent surgery and pulmonary hemorrhaging of unknown cause. At five o’clock, as she was being transferred to the MICU, Pat called me: “I think you’d better come down here. Right now.”

We sat together as a string of doctors stopped in to check on her – pulmonary specialist, cardiothoracic surgeon, MICU attending physician – none of whom seemed all too comfortable with Pat’s medical history or with the outcome of a surgical intervention to address the bleeding. We sorely missed the expertise of Dr. Farivar, who by then had moved on to a hospital in Philadelphia. Finally, the MICU attending sat down to tell us Pat’s cardiothoracic system was failing and we should go home to “get our affairs in order.” Well, Happy Fucking New Year to you too.

Pat had been through a lot over the past four and a half years, yet this caught us off-guard. We were still riding the high of becoming first-time grandparents. As for the LDS, our MO had always been to fight it and all its minions. The UI Hospitals doctors didn’t share our attitude. We had a clear sense that each of them had skimmed through her medical history, looked at her CT scans, and thrown up their hands. 

For me, their response was a bit of a gut punch. But on January 2, Pat was on the phone to Gretchen Oswald, a genetic counselor at Johns Hopkins and co-founder of the Loeys-Dietz Syndrome Foundation. Gretchen was always a great help, and as usual, her immediate response was positive: “Let me make some calls. Meanwhile, get the UI Department of Radiology to send us those scans.”

That evening, at the end of a long day in the operating room, Dr. Duke Cameron called Pat. Duke had performed her previous surgery at Johns Hopkins. He concluded the hematoma compressing on the pulmonary artery was the result of a leaky aortic graft, and also identified a pseudoaneurysm that should be repaired. He said he could do the surgery three weeks from then. (To offer some perspective, when I recently located a new primary care doctor after my old one retired, the first opening in her schedule was seven months out.)

Pat and I quickly made plans to fly to Baltimore. She got her primary care doctor to sign a consent form to carry her oxygen equipment on the plane. On Wednesday, January 22, we landed at Baltimore/Washington International Thurgood Marshall Airport and moved into the same McElderry Street lodging where we’d stayed before, a half-block from the hospital. Baltimore was experiencing an unusual cold snap – temperatures plummeting into the single digits – but we had little interest in seeing the charms of Charm City this trip. Pat was admitted on Friday, and her first surgical consults and radiology scans took place the next day.

Emma, Zach, and Oscar drove up from Richmond to see Pat that weekend. They were not permitted to come to her room, but I wheeled Pat down to the main lobby so we could visit. Our time together was brief but poignant. If Pat needed a reminder why she was fighting for her life, a couple of them were right before her eyes.

Pat was on Dr. Cameron’s surgical schedule for Monday, but we learned the downside to working with a high-demand surgeon who performs life-saving operations others won’t risk. Monday and Tuesday were long days in the Day of Surgery Room, waiting our turn, learning to interpret the codes of the surgery status reports as they flashed on the screen. Finally, we were told we’d been bumped by surgeries that took longer than anticipated.

Pat’s surgery finally happened on Wednesday. Besides repairing the ascending aortic graft and the nearby pseudoaneurysm, Dr. Cameron repaired the brachiocephalic vein,[2] using cow heart tissue. Because of the chance of further hemorrhaging, he decided to keep her sedated overnight, her chest cavity packed and sternum left open, to ensure the repairs had clotted properly before closing her up. That evening, I sat at her bedside, feeling positive about the surgery but unable to talk with her.

I knew Pat would need a week or more to recover well enough to be discharged. I felt torn between wanting to be by her side and wanting to get back to my students, particularly my AP Language & Composition kids, who were starting to gear up for the AP exam. I was also a bit worried about the bill I was running up at the McElderry Street lodging. Finally, mindful of the excellent care Pat received at Johns Hopkins, I knew I’d be more in the way than helpful.

I had already purchased a return flight ticket scheduled for the next day, thinking that three days after the surgery, she’d be well on her way to recovery. Focused on the surgery itself, we hadn’t talked about post-surgery plans. That evening I had a one-sided discussion with Pat, eventually persuading myself to take the flight. I had misgivings, and still regret that decision. I’m sorry I wasn’t there for her when they brought her out of sedation after suturing her up the next morning. We talked by phone, of course, and she kindly forgave me. In time, I forgave myself.

As we’d previously planned, Emma drove up to Baltimore and brought Pat back to Richmond when she was ready to be discharged, nine days after the surgery. And I flew to Richmond that weekend to bring her home. On the flight we shared our happiness about Oscar, child of our child, all that shining mystery.

We also talked about the great medical care at Johns Hopkins, but decided to look into finding a doctor at the Mayo Clinic willing to take over her case. We were confident that the Mayo staff had the medical expertise and resources needed for Pat’s care, and they were a very drivable 200 miles away, instead of a long 900-mile flight. We felt good about this decision, about how it could simplify our life, about being proactive when so much in those years consisted of staying one step ahead of medical emergencies.

Footnotes:

[1] These workshops are excellent professional development experiences for teachers. Led by Chicago Architecture Foundation staff and featuring a number of Chicago-area professors and working architects, the workshop offered a great model of place-based or experiential learning, which I was increasingly striving to incorporate into my classroom.

[2] Either of two large veins on each side of the neck, which receive blood from the head and neck, and unite to form the superior vena cava.