The grandchildren in cruise control

By Robin Jovanovich

When you stood at the church altar and repeated those solemn vows many moons ago, did you appreciate the poetry and power of the words, or were you peeking out from under your veil, looking up at the heavenly rosette windows or out to the pews where you were heartened to see family members who didn’t always get along making an effort? Were you more than a little anxious that the minister would stumble on the pronunciation of the groom’s last name, and wrestling with whether to tear off the veil and proclaim that you were keeping your monosyllabic maiden name?

A rich fantasy life, along with patience and humor, can get you over most of life’s hurdles, which my husband and I have faced plenty of in our 45-year union.

Once the kids were out of the house, our first thought was FREEDOM! By then, he was a successful executive who didn’t need to stay late on Friday afternoons; I was the publisher of a bi-monthly local newspaper in a town where oftentimes nothing alarming or newsworthy occurred. We could play hooky and sneak out to a movie. We were moviegoers, and they still made movies, which were shown in actual theaters, in the late ’90s. We could dash off for long weekends, fly to Europe with similarly minded friends who loved lingering in museums and walking for miles long before we all started thinking about getting our steps in.

But a few short years later, on September 10, 2001, I beat my husband in a game of tennis, which startled us both. He stayed home from work the next day, which was highly unusual. From the time a friend called us that morning and simply said, “Turn on your television”, we barely left our kitchen stools, watching the tragedy unfold, calling everyone we loved to make sure they were safe, speechless for long stretches, trying to reach hospitals to see if they needed blood donors, realizing that life was irrevocably altered.

As we finally fell into bed, I turned to him and said, “I’m so glad you were home. But why were you home?” He muttered sleepily, “I was a little short of breath and I’ve got this terrible pain in my shoulder.”

It was months before he was diagnosed with bronchiolitis obliterans, which is exactly what it sounds like, a fatal lung disease. We were encouraged to get a second opinion and flew out to the Mayo Clinic in Rochester, Minn., where the pulmonary specialist confirmed the diagnosis. By the end of 2003, my husband needed help going upstairs, tying his shoes. Right after New Year’s, he was “promoted to No. 1” on the double-lung transplant list at Columbia Presbyterian Hospital. If he survived the transplant, we were informed, he could live another three to five years.

Just before midnight on March 8, 2004, the transplant team called to say they had a donor and he needed to be at the hospital right away, within the hour.

How did we make it through that first year? He lost his eyesight and underwent months of chemotherapy with the guidance of professionals. I worried that he’d die from struggling.

But he didn’t, so we went on vacations, and he was there when our sons got married, and pacing in a waiting room when our grandson was born in March 2014, almost exactly ten years after his transplant, and again in November 2016 when our granddaughter was born.

He made it through the pandemic, enjoying our family, our friends, the life we’d built.

We’d been told that transplant recipients are at high risk of skin cancer, cardiac disease (he memorably had a heart attack on our wedding anniversary in 2010), and kidney failure. (I still have not yet received credit for reading every page of “You and Your Transplant”, the binder the team handed me the day I finally brought my husband home from the hospital.)

Earlier this year, after his quarterly checkup, a member of his remarkable transplant team contacted him — not by My Chart — to confirm what we already suspected. His renal function had sharply declined. He was not a candidate for a kidney transplant; he would need to go on dialysis. This summer, we spent many days at a dialysis center, just two blocks north of the hospital, where we received training for at-home peritoneal dialysis. The nurse was a terrific teacher, caring and kind.

One day, she said the magic words, “You’re ready!” Boxes of supplies were delivered, then more boxes. I stacked them up to the ceiling in the basement. (Where did dialysis patients who lived in apartments put them? I wondered.) We put on masks, used unbelievable amounts of Purell, hung bags of fluid on poles, checked if they were clear, weighed them, and only forgot to close the clamps once.

The process got easier. Thankfully, our daughter-in-law, who is in Nursing School at Columbia Presbyterian, lives nearby.

But then the process stopped working. The surgeon tried massaging the port before informing us that he needed to put in another port. Within a few days, it was apparent that my husband would be spending three days a week at a dialysis center.

While we were sitting at home — for days — waiting to hear that any nearby dialysis center had a slot for him, I contacted the nurse and the medical supplier to inquire where I could drop off the 55 unopened cartons of fluid bags, drain bags, “chucks”, large gauze, transparent screens, and gizmos for a machine that would not arrive. “Because of Covid, everything needs to be thrown out.” Not recycled, not given to another patient.

More bad news. No center would take him until he underwent three successful rounds of dialysis in a hospital.

Ten days ago, he was admitted to the emergency room at Columbia Presbyterian, where he sat and tried to sleep for over 24 hours. They found him a tiny room in an annex, where he waited.

He was moved to a room and had his first hematological dialysis a week ago. It was a glorious fall day and, after making sure he didn’t need anything, I walked out of the hospital at 168^th and Broadway and made my way through a section of homeless hell and past a litter-strewn housing project, before realizing that I hadn’t been inside Cathedral of St. John the Divine in years. I stopped in every bay and read every plaque before heading to Columbia, where I had taken a summer course in 1972 with historian Ken Jackson. The campus was more beautiful than I’d remembered.

You forget that there are hills to climb in Morningside Heights, and corners to pause at — Duke Ellington Boulevard, for one. I walked through Central Park for as long as I could, before crossing Fifth Avenue. I grew up on the Upper East Side and was still learning about the West Side.

When I finally arrived at Grand Central, I looked at my phone, clicked the health icon, and discovered I had recorded 29,000 steps.

I excitedly called my husband from the train. He didn’t answer, so I left a message:

“There are a lot of things I want to do. Are you with me?”