By Tiffany Winters
Even under the best of circumstances, making it onto an organ transplant list is no easy feat. Simply needing an organ isn’t quite enough; rather, you undergo a battery of tests, procedures, and consultations over a series of weeks to prove you are not only healthy enough to survive a transplant, but also have insurance approval to foot the massive bills—and a support network to carry you through the recovery process.
The older you are, the more likely you are to have other “comorbidities” that could complicate a transplant. So when my mother made the liver transplant list at the age of 71 this past June, it was little short of a miracle. In addition to the routine tests, she had to undergo a heart catheterization and a frailty assessment and made a special visit to meet with the lead transplant surgeon, which was not part of the process for younger patients. We knew her age would work against her—they’d told us that at the very beginning—but they’d said if she cleared every test, that meant she’d proven she could not only survive a transplant, but thrive during the recovery process and live many happy years thereafter.
But age wasn’t the only factor at odds with my mother’s chances: she began the evaluation process awash with grief, mere hours after my father passed away. And then the reports started coming in: cases of Covid-19 had been confirmed in the U.S., and we were in the middle of a global pandemic. She was tucked away into relative isolation and ushered out only for appointments, many of which required she travel halfway across Indiana and wear a mask for hours at a time. Appointments were delayed, user errors meant she had to repeat tests, and at one point she had to go to a crowded lab to be tested for Covid-19, just to make sure she was clear of the virus before a procedure—never mind that going for the test put her at risk for the very thing they wanted to rule out. But she did it all, never missing an appointment, even as she carried the incredible burden of quarantine-induced loneliness. It weighed her down and visibly slowed her gait, but she refused to give up. She re-focused her energy and continued to move forward, sometimes through tears, her objective remarkably clear: “I just love you all so much,” she would say. “And I want to watch my grandchildren grow up.”
And so she passed test after test and consult after consult until one day we got the call: they were adding her to the list, and they were optimistic they’d find a liver for her soon. A process that took five months had come to an end, and with it: we were rewarded with the glorious gift of hope. Like a pregnant woman eager for the birth of a child, she was advised to pack a bag and be ready.
For the first few weeks of the pandemic, my mother and mother-in-law quarantined together. My husband, daughter, and I took every possible precaution during that period, and—once in the clear—eventually started taking day trips to visit her, run errands, etc. During those rare visits, we kept our distance, wore masks, and maximized time outdoors. From there, we started taking longer trips and hatched an idea: let’s buy our four-year-old daughter a kiddie pool to set up there. My mother, unlike us, has a beautiful backyard, and we could split our time between quarantining here in suburban Chicago and there, in rural Indiana—and then stay there for four solid weeks post-transplant, when she’d need 24/7 care while recovering. I imagined all these beautiful days outdoors, the small pool giving my dihydrogen monoxide-loving daughter a welcome distraction while her grandmother, someone who cherished her kids and grandkids above all earthly things, watched on.
Throughout this entire process, a recurring source of frustration for my sister and me, as well as our mother, was the politicization of mask-wearing and social distancing during such a precarious time. For us—and for much of Illinois, where masks were mandated as of May 1—wearing a mask and keeping our distance became a sign of respect for the most vulnerable members of society, my mother being one such person. We happily obliged with these and all other measures, forever focused on the end game: keeping my mother, and everyone else like her, alive. But social media painted a very different picture across state lines in Indiana. While I did see the occasional post from a handful of conservative friends that indicated their support for safety precautions, including masks, and their dismay that it had become a political issue, my newsfeed was otherwise full of dangerously false information, shared and re-shared at alarming rates. When legitimate news articles made an appearance, they were often outdated and presented to “discredit” more recent data. It was clear people were being hit with conflicting information from all directions, and the lack of a consistent authoritative voice led many to regard unsubstantiated memes as incontrovertible fact.
I held onto the hope that others would eventually grow to see wearing a mask as a simple way to protect others and no different than wearing a seatbelt or not smoking in public. But in the meantime, chaos was reigning and a big chunk of my home state was relenting to the staunchly anti-mask propaganda. Eventual visits to Indiana confirmed the more vehemently anti-mask posts weren’t just online posturing but, rather, a terrifying reality. Even pharmacists in hotspot territory weren’t masking up, but we still expected my mother’s hospital—one of the largest networks in the region—to be an exception to what we were experiencing elsewhere in the state.
But no. When I accompanied my mother to her final evaluation appointment in June, we were shocked to realize that there was no way in or out of the building that didn’t require us to walk through a confined space where the vast majority of visitors were not wearing masks. Once inside, we waited in a line where social distancing was lackadaisical at best, and it wasn’t until they were at the front of the line that unmasked guests were directed to grab one from a community jar, invariably touching two to three others in the quest for their own. Beyond the front desk, an alarming number of people, visitors and employees alike, removed their masks. These weren’t just quick breaths of fresh air, but rather sustained time without a mask in situations where staff interacted with patients: a lab technician who laughed heartily as she walked past us, a young man at the front desk who directed me to the wheelchairs, a receptionist who checked us into her department.
We had previously been told that this specific facility included wards dedicated to immunocompromised patients and, as such, didn’t take on Covid-19 cases. That didn’t mean everyone who entered their doors was in the clear, however, with many visitors coming into the building for miscellaneous lab work, imaging, physical therapy, etc. As such, we expected this location to be extra cautious in an effort to protect its most vulnerable patients, but as we worked our way through its halls, we experienced a very different reality. And in fact: on a future visit, I had no choice but to frequently interact with an unmasked nurse at the nurse’s station. I’d consistently experienced better safety measures at my neighborhood Trader Joe’s. But at this hospital, we felt increasingly anxious and vulnerable, as though all of our efforts to protect my mother were being undone by the political divide.
Less than two weeks after making the transplant list, my mom returned to the hospital to have retained fluid removed, a fairly routine visit for liver disease patients that involves both a paracentesis (an “abdominal tap” that drains fluid from around the stomach and other organs) as well as a hefty dose of diuretics to help re-direct additional fluid through her kidneys and out of her body through more natural means. Diuretics can significantly tax the kidneys, so doctors closely monitor kidney function during these stays. My mom had felt worlds better after a similar visit several weeks prior, and I didn’t think much of it. I stayed 230 miles away in Chicago, planning to visit when she was discharged after what would surely be a three to five-day stay at most. But something went wrong. Her hemoglobin levels dropped after the first paracentesis, and her MELD score, which measures the severity of liver disease, increased by several points. They ruled out an internal bleed and she was subsequently moved up the transplant list—a “nationwide priority,” we were told. And then two hours later: they had found her a liver.
It felt like every prayer under the sun had been answered, though I admit there was a bittersweet element: I never lost sight of the fact that our joy was countered by another family’s torment. As happy as I was for us, my heart hurt for complete strangers. But as one hour ticked away, and then another, I grew increasingly concerned. Why was it taking so long for them to take her back? Aren’t these procedures time-sensitive?
I was halfway to the hospital when I got the call: something was wrong, and they were cancelling her transplant. They remained optimistic that the problems could be corrected and that they would be able to find another liver for her. But the very next day, everything had worsened and their optimism turned cold. They said they didn’t know what had happened, but gave us a jumbled smattering of details to explain why they’d called off the transplant: her kidneys were only functioning at 15%, which they didn’t think was sufficient for someone her age to survive a liver transplant. And then they mentioned there was fluid in—and a “ground glass” pattern to—her lungs. “Wait a minute,” I interrupted after they quickly moved on to something else. “That’s what happens to lungs infected with Covid-19. Has she been tested?” My mind swirled back to one of my mother’s nurses, who had recently confessed to me during a phone call that he refused to wear a mask anywhere outside of work, despite being entrusted with the care of one of the most vulnerable populations. “This whole thing has been blown out of proportion by the media,” he’d said. “If you hear someone cough, just step back six feet. It’s that simple.”
They assured me she’d been tested and that her test was negative. They said they were acting under the assumption that she was fighting some sort of infection and had put her on a powerful course of antibiotics. But they also said her kidneys had suffered something similar to a heart attack, and they didn’t expect her numbers to improve, even on dialysis. “How can you say things won’t improve if you don’t understand what’s happening in the first place?” I asked over and over in a multitude of ways, their response always a variation of the same exasperating theme. When I hung up the phone, it hit me: aren’t false negatives a known problem, particularly within the first few days of exposure to the Coronavirus? A quick search also revealed that kidney function is negatively impacted for up to 30% of patients hospitalized with Covid-19. I wanted my mother to be retested; my sister agreed and promptly called the nurse’s station to put in the request. I was en route to Indiana later that evening when I spoke with one of the hepatologists who had been tending to my mother. He confirmed he saw the request, but he didn’t think there was a need to test her again.
“But the transplant doctor described a ground glass pattern in her lungs. Isn’t that typical with Covid-19?” I asked.
“It is,” he said. “But that’s not what I see what I look at the scan.”
“OK, then what do you see?”
“At this point I really can’t say.”
The next morning, I was finally able to visit my mother in person. Due to restrictions tied to Covid-19, she was limited to one visitor per day, so I FaceTimed with my sister any time hospital staff entered our mother’s room. And enter the room they did, with five to six doctors, nurses, and administrators coming in at any point and congregating around my mother’s bed, their very numbers an indication that my mother’s situation was dire. I quickly mastered the art of reading their expressions through the masks, the doctors’ brow lines and vocal tones revealing both frowns and smirks with remarkable clarity.
My sister and I asked question after question, having spent the previous evening researching and conferring with friends in the medical field. Some of our mother’s doctors patiently listened to our questions, were sympathetic, and seemed willing to do whatever might increase our mother’s odds of surviving. But they also made it clear that the next steps were up to our mother and the nephrologist assigned to her case. When the kidney doctor came in a few minutes later, her attitude toward us was the polar opposite of the previous set of doctors—so much so, that it felt like they were playing the medical equivalent of good cop / bad cop. She was curt and uncaring and visibly upset that, in the absence of receiving any answers, we had taken it upon ourselves to search for them. That same doctor unapologetically painted a very grotesque picture for our mother, describing in graphic detail the unavoidable path that awaited her if she chose anything other than going home on hospice. And sadly, that doctor was the last, and loudest, clinical voice our mother heard on the matter. Her narrative was this: there was no hope, and my mom could either go on dialysis in the ICU and stay there until she died a miserable lonely death—or she could go home to spend her remaining days with family. So she asked to go home.
I was packing up her hospital room when they delivered yet another blow: they told us she might not be able to go home after all, as her blood pressure had dropped too low. And despite our mother requesting pain medicine, they continued to hold off because it could further lower her blood pressure—until all of a sudden they changed their minds on all of the above. They said they’d be sending her home despite the low blood pressure, gave her two doses of Fentanyl separated by two hours (when I expressed concern, they assured me it was a small dose), and then loaded her onto an ambulance gurney within a minute of that second dose. She was conscious and coherent when the ambulance drivers pushed the gurney into a staff elevator, and I said “I love you; I’ll see you at home.” “I love you too,” she said, raising her head ever so slightly so she could see me over the gurney. And with that: the doors closed, and I hurried to my car.
My mother arrived home unconscious, her chest rising and falling with every labored breath. And yet, even still, we recalled our father spending days in hospice and remained hopeful she would wake up. We set about decorating the room she’d chosen; she’d specifically requested to be in a room with a television, in large part because the doctor’s description of a utopian hospice death implied she’d have days to reminisce with family, tie up loose ends and, yes, even watch some of her favorite programs. We filled the room with photos of family, fresh flowers, and her grandchildren’s artwork. As my sister and I came and went, my husband grabbed a guitar, sat down next to my mother, and started playing some of her favorite songs. She never woke up. She was home for less than two hours when she stopped breathing and our devastation began.
Even through our hurt, our anger, and our anguish, we had the bureaucracy of death to tend to: arrangements, wills, and the like, a horrible intrusion into our grief when all we wanted was to sit and cry. Our mother had made it clear she didn’t want to ever be the reason someone else contracted Covid-19, and funerals are “super-spreader events.” How do we respect her wishes and still celebrate her life? How do we ensure the safety of the people she cared so deeply about and still find closure?
I couldn’t take a single step forward because my mind was racing with the emotional whiplash of the recent past. I wanted answers; I wanted to understand what had caused my mother’s sudden and rapid decline, but her doctors gave us none of that. Rather, as we discussed each of the possibilities my sister and I had researched, and the doctors dismissed them one by one, we felt the need to justify our questions by reminding them that our mother’s condition, although serious, was nevertheless stable when she arrived at the hospital for a routine procedure just a few days earlier. They had demanded we make impossible decisions; they seemed to think that “here is where we are” was a sufficient answer to a family repeatedly asking them: “Yes, but how did we get here?”
We were taunted by the turmoil of not knowing. What if there had been an undisclosed error with her paracentesis—did they introduce an infection, or inadvertently puncture something? Was this Covid-19 or another underlying infection due to cross-contamination in a hospital setting? They seemed cagey when I asked to see which meds my mom was on—could this have been an accidental overdose or an allergy to a medication they’d prescribed, or was it all in my imagination? Did they ultimately decide to discharge her, despite her dangerously low blood pressure, because we were asking too many questions? Or perhaps no one was to blame, and everything that had happened to my mother was merely an anomaly of the disease, an unpredictable but possible conclusion to any non-alcoholic cirrhosis patients’ life.
I was lost in thought when I heard a tiny voice cut through my mind’s chatter: “Can we still set up my pool?” My daughter only recently turned four, and though she is old enough to know, love, and miss her grandmother, she is too young to fully grasp the finality of death.
I admit I had reconsidered. This small, inflatable pool was initially a symbol of hope but had suddenly become one of devastation. I wanted to throw it into a pyre and burn it, giving it, and all my optimism, their last rites. But then I looked at my daughter, herself lost and confused and struggling to understand why grandma will never come home again, and I obliged.
And so she swims while I write an obituary. She dives for rings while I sort through papers. She laughs and giggles as I look to the sky, and we both ask the age-old question:
“Mom, are you watching?”