Coronavirus, Charity, and the Trolley Problem – Crooked
By daniellenierenberg
I signed up to be a bone marrow donor in 2016, after an anonymous strangers marrow saved my father. It started out easy enough: The registry mailed me a kit to swab my cheeks, I mailed it back, and then I heard nothing for years. This wasnt unusual. Marrow transplantation requires finding complex and rare genetic matches; according to Be The Match, only about one out of every 430 people who sign up will ever go on to donate. I expected it would be a while before I got to pay my dads transplant forward. It did not occur to me that my opportunity might arise at the height of a global coronavirus pandemic.
The coronavirus created a tangle of moral dilemmas that most Americans never expected to face. At the extremes, weve resolved these dilemmas easily. Weve designated whole categories of labormostly underpaid, perennially underappreciatedessential because we accept that even with a plague lurking, people must eat and medicate and have working showers in which to cry. On the opposite end of the spectrum, weve trained our online shaming apparatus on the most reckless and selfish offendersthe wealthy New Yorkers who fled to the Hamptons, the house parties posted to Instagram with weak defensive captions (we only took our masks off for the body shots).
The longer we live in the shadow of an uncontained virus, the more agonizing the in-between dilemmas become. How long should people be expected to remain isolated from their loved ones? Is there a point at which the negative effects of physical distancing begin to outweigh the toll of the disease itself? On the one hand, we should do everything in our power to protect the most vulnerable in our communities. On the other hand, what should we tell the vulnerable seniors who feel they dont have endless spare months to let pass without embracing their grandchildren? Are our individual mitigation responsibilities lessened by the fact that we all made sacrifices to buy an incompetent president time to get this under control, and he squandered it? Are we that much more obligated to pick up the slack?
In some sort of sick philosophical joke, the moral waters get even murkier when you throw altruism into the mix. For all of the guidance reminding us of the impact of our selfish choices on strangersyou might not kill your own grandmother by going to that dive bar, but think of the bartenders roommates grandmothermoral experts have had far less to say about the boundaries around charitable acts. How should we think about helping strangers when doing so requires a dangerous level of social interaction? How should we measure the suffering of the people we want to help against the harm we risk causing to unseen others in the process? That quandary leads to another awful question that most people should never have to confront: When does human life become too risky to save?
Be The Match first notified me that it had identified me as a potential match in June, when coronavirus cases in Los Angeles, where I live, had just begun to spike. By the time I was confirmed as the patients best match and asked to proceed with a donation several weeks later, the city had become a full-blown hotspot. The idea of navigating the whole process in plague conditions made me nervous, but underneath the anxiety was a distinct whiff of relief. Like a lot of people, Id spent the last few months in a horrified daze, helpless to do anything but stay home, donate money, and cyberbully the mayor. Here, finally, was a task that felt equal to the urgency of the moment. Here was somethingsomeonereal. I just wasnt allowed to know who.
Be The Match will put donor and recipient in contact one year after the transplant, if both have consented; until then, everything is completely anonymous. I was told that my recipient was a man in the United States, along with his age (surprisingly young), and diagnosis (a type of blood cancer). Because matches are typically found within shared ancestries, I assume that he is, like me, an Ashkenazi Jew, and because he needed a bone marrow transplant, his situation must have been dire.
Fortunately, helping people like him has become simpler. When most people think of donating for a bone marrow transplant, they imagine general anesthesia; a very big needle; a painful recovery. This is one of the two ways to donate, but its grown much less common. Ninety percent of donors (including me) are instead asked to donate peripheral blood stem cells (PBSC), through a process called apheresis. While a donor is awake and watching Party Down, their blood flows through a tube attached to one arm, gets spun around in a centrifuge that separates out the extra blood-forming stem cells, and is returned through a tube into the other arm. This can take several hours, but its painless, and neednt even happen at a hospital. Usually.
(Sarah Lazarus)
On August 13, two nurses met me at the San Bernardino blood bank where I was scheduled to donate later that month. We were all there for an assessment, to make sure my arm veins could handle the apheresis needles. It was a weird little ritual. The two women bent on either side of me, intently tapping along my upturned arms in total silence as if waiting for something to tap back. They then switched sides, tapped the opposite arm, and issued their verdict: Too small. I would need to donate through a central line placed in one of my larger veins, and that could only happen at a hospital. I would probably be sent to a medical center two hours south in La Jolla, they told me.
This was a complication, but not necessarily a big deal. Be The Match footed the bill for all of my donation-related expenses, including the fancy car service that seemed safer, COVID-wise, than using Lyft. (I am a genius who moved to Los Angeles without a drivers license. A worse essay for another time.) Donating at the La Jolla hospital would mean a longer commute, maybe even one night in a hotel, but that was about it.
Later that morning I was waiting for my next appointment at an urgent care center when Heather, my donor coordinator, called to tell me that La Jolla didnt have an opening on the right day. Neither did the next-closest option, she told me as I paced around the parking lot, and the patients team couldnt shift his treatment schedule.
So my question for you is, would you feel comfortable flying to Boise, Idaho?
I went back inside to the busy waiting room and reclaimed my seat. Across the room, a man in a UPS uniform freed his nose to rest obscenely on top of his mask. I hunched over my phone and googled, Boise coronavirus. My phone informed me that it was dying. The UPS man coughed. On a TV in the corner, the president admitted he was sabotaging the post office to steal the election. I googled, airports coronavirus. At last, a nurse called me back and started checking my vitals.
Your heart rate is really elevated, she said, frowning at the reading. Any idea why?
As of this writing, Be The Matchs COVID-19 FAQ page was last updated on April 6. Heres part of the section on air travel:
Q: Are there alternatives to donors traveling for donation?A: Possibly. If you feel uncomfortable traveling, we respect your decision. However, it is extremely important that you tell us right away so we can look for alternatives. Donation is time-sensitive, and any delay can have a negative impact on the recipients wellbeing. It may be possible to arrange for donation to occur somewhere within driving distance.
There was an alternative to Boise, it turned out, if I felt uncomfortable. I could donate at the La Jolla hospital a day later than originally planned. My cells would be cryogenically frozen and given to the patient a week or two later, instead of immediately. Heather told me that the patients team preferred me to stick with the original date, that a delayed transplant would be riskier for him, but, for confidentiality reasons, they couldnt tell me how much riskier.
We dont want you to feel pressured, Heather emphasized. You should only agree to travel if you feel comfortable.
Did I feel comfortable? It depended on the circumstances, which I wasnt allowed to know. The window of risks were willing to take expands as the stakes get higher; anyone who showed up to a Black Lives Matter protest this summer or signed up to be a poll worker this fall can attest to that. I wouldnt feel at all comfortable flying for the heck of it, but I would certainly do it to save a life. This fell somewhere on the vast spectrum in between, but I had no idea where.
How do you make a call about your personal risk tolerance when its also a choice about the course of a strangers cancer treatment? If the pandemic had taught us all a valuable lesson about the interconnectedness of our fates, I was now being beaten over the head with it. Stuck without enough facts to make an informed decision, I thought about my dads old hospital room in Baltimore, the airlock separating his ward from the rest of the building because any mundane microbe could kill the patients on the other side. I imagined a somber-looking doctor walking through those doors to give my vulnerable recipient the news.
Im afraid theres been a change of plans, he would say, removing his glasses. It seems your donor is a pussy-ass bitch.
I called Heather back and told her to arrange my donation in Boise.
In most respects, my pre-donation medical screening was extremely, almost ludicrously thorough. I submitted vials and vials of blood to check for a host of diseases and disorders. I peed in a cup to make sure I wasnt pregnant. I had more blood drawn, to make sure I really wasnt pregnant. After the second pregnancy test confirmed the results of the first pregnancy test, I got the following email from Heather:
The result of your repeat pregnancy test on 8/13 was negative, but we are still required to complete our pregnancy assessment with you today. The assessment consists of a single question Is there any chance you could be pregnant? Please respond via email when convenient.
I have not touched another person in five months, I wrote back.
Thank you for completing the pregnancy assessment, Heather replied.
In one respect, my pre-donation medical screening seemed oddly lax. I wasnt tested for coronavirus until the day before my flight, and only then because I panicked.
(Sarah Lazarus)
The PBSC donation process begins in earnest a few days before the stem cells are actually collected, with five rounds of filgrastim injections. Its a drug normally given to cancer patients to bring up low white-blood cell counts after chemo or radiation. In my case, it would send my healthy bone marrow into overdrive, to produce enough cells for the donation. The injections have a few side effects: bone pain, fatigue, headaches, nausea. Essentially, filgrastim makes you feel like you have the flua particularly special feeling in the year of our lord 2020. My side effects were mild and I knew to expect them, and I was managing them fine until an extra one showed up.
The night after receiving my second round of shots, I went for a walk around my neighborhood. It was a hot night, and I was tired and achy from the medication; this was not a fast walk. And yet within a few blocks I noticed that my breathing was quick and shallow, and my heart was pounding as if Id just run a sprint. When I tried to take a deep breath, it felt like there was an elastic band cinched around my chest.
Shortness of breath was not on my list of filgrastim side effects. Neither were the heart palpitations, which continued long after I went home and collapsed on my bed.
I put an empty Gatorade bottle on my stomach and watched it pulse up and down as I considered how fucked I was. I had assumed my fatigue and body aches were side effects; what if those were symptoms, too? I mentally tallied up my appointments from over the past week. I had been to five different medical facilities, been a passenger in three different cars. Of course I had caught it. How stupid to think I wouldnt catch it.
The timing was a nightmare. At some point while I was receiving the filgrastim injections, the patient began a course of high-dose chemo to kill off his own blood-forming stem cells in preparation for the transplant. If I had to back out of donating after that treatment began, the patient would die quickly.
For a few desperate minutes, I thought about keeping these symptoms to myself. I didnt have a fever. As long as I didnt develop one, maybe I could get to Boise and finish the donation leaving no one the wiser. What was the moral math, I wondered, of proceeding with travel plans that might seed multiple new outbreaks (but also might not) and lead to numerous deaths (but maybe none), knowing that if I didnt, one person would certainly die? Had anyone solved that particular trolley problem? My heart palpitations got worse. This was insane. I texted Heather everything and asked if she could arrange for a rapid coronavirus test the next day.
It was nearly 11 p.m. by this point, later in Heathers time zone. She made sure my shortness of breath wasnt an emergency, then said shed see how I was feeling in the morning to assess whether a test was necessary.
I went to bed and thought about what they would tell the patient. Would his doctors be allowed to explain why I couldnt donate? Would he think I had just bailed? Would he and his family hate me? What did it say about my motivations that I was fixated on this? Probably nothing good. I drifted off into a stress dream, and then it was dawn.
My breathing was still labored in the morning, and now, compounding my dread, I had a definite tickle in my throat that verged on a cough. Heather and the medical team decided this did indeed warrant a coronavirus test, and went about setting one up. In the meantime, Heather told me, I should proceed with my third day of filgrastim.
When my home nurse Maria arrived at 8 a.m. to do the honors, I stopped her outside to inform her that I might be a vector of death. She was unimpressed. (Ok, sweetie. Can I come in and wash my hands?) Soon afterwards, Heather called to let me know she had found a doctors office that would send someone to test me at my apartment, and deliver results within 24 hoursjust fast enough that I could still make my flight if I tested negative. Be The Match picked up the tab for this, too, but the receipt came to my email. The cost of a rapid PCR test, antibody test, and home visit came out to a cool $900.
The unaffordable testing nurse arrived an hour later cloaked in full PPE. She coached me on how to swab my own mouth and throat for the diagnostic test, then we made small talk while waiting for the little white antibody tray, which looked for all the world like yet another pregnancy test, to reveal either one or two lines. She had been doing these home visits for two weeks, she told me, and none of her patients had yet tested positive for an infection. For no good reason at all, this made me feel better. The antibody test came up negative. The nurse wished me luck with my other results and headed off to her next appointment, leaving me alone with my wonderful thoughts.
I had nothing to do for the rest of the day but wait. By late afternoon my throat felt better, and my breathing had become less conspicuous. At one point I started to pack a bag, wondered if I was jinxing it, and unpacked the bag. At 10 p.m., less than 12 hours after my throat swab, the results arrived in my inbox. NOT DETECTED. I texted Heather a screenshot and lay down on the floor, awash with relief.
(Sarah Lazarus)
The travel and donation themselves were mercifully uneventful. My parents, who were very pleased that I was donating and terrified that I was flying, had shipped me a steady stream of hand sanitizer, KN95 masks, surgical masks, disinfectant wipes, face shields, safety glasses, and gloves. I wore only some of this to the airport, unless you are my parents, in which case I wore all of it. In any event, I felt protected. My terminal at LAX was deserted, and Heather had booked me a first class seat on Delta, which limits capacity to 50 percent. After barely leaving my immediate neighborhood for half a year, the feeling of takeoff, even for a two-day trip to Boise, was sensational.
The next day I arrived at the hospital at 7:15 a.m. By 8:30 Id had a central line inserted above my collarbone, in a painless 15-minute procedure under local anesthesia. The song We Are Young was playing, and the doctors threading a tube into my neck were chatting quietly about a patient whod given them trouble over the weekend. (Im just saying, if youre cussing people out and trying to beat me up, you probably didnt have too bad of a stroke.) Ive had much less pleasant mornings.
By 9:30 I was in bed and hooked up to the apheresis machine, where I would remain for the next seven hours. At one point my calcium levels dropped too low and I threw up; this was the excitement peak of the day. I spent the rest of the time comfortably reading or watching Netflix, keeping an eye on the stem cells slowly collecting in the bag above my head, and carefully avoiding any RNC coverage that might cause the nausea to recur. At around 4:30 I was loosed from the machine, and after waiting a couple more hours while the lab made sure I had forked over enough cells, the nurse removed my central line and I was officially done.
I was exhausted that evening, but the next day felt well enough to go for a walk along the Boise River, where I took 50 terrible photos of a great blue heron. My shortness of breath, whatever it had been, was gone. The day after that I was just a little more fatigued than usual, and by day three I was back to my 2020-adjusted tiredness baseline.
Coronavirus complications aside, the actual donation process was remarkably easy; shockingly easy, when you consider the scale of what it means for the recipient. It was a time commitment for a few weeksIm lucky to have employers who were happy to give me the necessary leaveand involved some mild discomfort, but as a baby about both pain and scheduling, I would not hesitate to do this again.
I also came away with a clearer sense of how to approach the kind of altruistic acts that standard social-distancing guidelines say we shouldnt engage in. The people and organizations that facilitate charity, particularly sensitive medical charity, have existing support systems that theyve retrofitted to help mitigate the extra risks. Those systems may be imperfect and require some self-advocacy, but when combined with ones own diligence and added layers of protection (and, if one is lucky, a concerned Jewish mother), its possible to get help to the people who need it with risk levels not much higher than we tolerate in normal times. There is a way to be selfless without being self-sacrificing, or worse, becoming an inadvertent menace.
Even so, pandemic experiences like this one wont be universally feasible. One might live with immunosuppressed family members or roommates, or have care-taking responsibilities, or lack the spare emotional bandwidth, or have any number of circumstances more complex than my own. And thats finethere will still be people in need of a lifeline on the other side of this crisis, and that lifeline will be no less appreciated.
I asked my dad, Mitchell Lazarus, what he thought potential donors should know about the recipient experience. He sent me this:
The diagnosis is, literally, a death sentence: you will soon die. Word of a matching donor who has agreed to participate is a reprieve the only possible reprieve. I have felt relief many times in my life, but except possibly for the safe birth of my children, nothing like that. I was in a chemo chair when they came by and told me. I called my wife and said, I have a donor, and I started to cry.
Patients in the transplant ward talk a lot about our donors, despite not knowing who they are. Everybody everybody! tears up when talking about their donors.
True story: I was in the hallway on the transplant floor, talking with the woman in the room next to mine. A nurse walking by stopped and said, Mr. Lazarus, are you having trouble with allergies? (which would require attention). I said no, I was talking about my donor. No other explanation needed. She patted my arm and walked on.
I am a chimera. The rest of me has my own DNA, but my blood cells carry my donors DNA, not mine. Somebody elses blood pumps through my body, keeping me alive, not just through treatment, but every second of every day for the rest of my life. How can you not be grateful to someone who literally gave you the rest of your life?
At some point during the 24 hours after I was unhooked from the machine, a volunteer courier arrived at the hospital in Boise. He or she or they retrieved the bag of my donated cells, flew with it to wherever the recipient is located, and hand-delivered it to his hospital. The patient almost certainly received the transplant before I made it back to Los Angeles. If all goes well, my stem cells will navigate their way into his bone marrow, where theyll settle in, multiply, and start producing healthy blood cells. If all goes well, this perfect stranger will eventually have my blood type, and potentially even my childhood immunitieshe might soon, in other words, have my immune system. If all goes well, may that sucker protect us both.
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