By TIFF FEHR
January 13, 2017
Times Insider delivers behind-the-scenes insights from The New York Times.
Ten years ago, I did not expect my brand new Twitter account to have much of an impact on my life. Yet it certainly has — affecting my career, my choice of where to live, my friendships, my adoption of pets, my intellectual lifestyle and even my emoji use. Now, Twitter has cost me a body organ. Yet my (voluntary!) loss is another Twitter user’s gain: I recently donated a kidney to a fellow journalist, Michelle Minkoff, who works at The Associated Press.
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Michelle and I do similar jobs, writing both words and code for our separate news outlets. Our dual skills form an ill-defined newsroom role frequently called data journalism, which is a bland term for a diverse set of people, skills and interests.
Still, the small community of “news nerds” is strong and supportive. As active members, Michelle and I have many friends and peers in common, in addition to our jobs. Yet until the morning of the transplant itself, we had never met in person.
Ten years ago, Michelle was facing her first kidney transplant surgery after an autoimmune disease, IgA nephropathy, had weakened her kidneys to the point of failure. Michelle’s aunt, Karen Kwan, donated Michelle’s first transplanted kidney in 2006.
But Michelle’s autoimmune disease would eventually necessitate more transplants. A new donor from within her family was unlikely and not recommended by her doctors. Michelle had to hope for an “altruistic donor” to come along while she waited on the national transplant list.
Michelle is not a person who is resigned to waiting passively. Over the same 10 years, she had earned two degrees and started working at The A.P. She, too, had joined Twitter and found a home in the news nerd community.
Eighteen months ago, her donated kidney dropped into the warning area for kidney function. To Michelle, this meant it was time to crowdsource herself a new kidney. She rallied friends and fellow news nerds to help her set up a website and survey to seek volunteers. Family and friends — including many friends she and I have in common — amplified her posts on social media.
Michelle’s doctors were flabbergasted by her list of volunteers, as well as by her proactivity. As Michelle wrote in her blog chronicling the search, the response was “overwhelming — many who need a kidney struggle for years to find one person willing to be tested. These numbers are practically unheard-of.” From 48 people who joined the list, 14 were matches for basic blood-typing criteria, including me.
Subsequent tests confirmed I was her best match, which had felt inevitable to me from the start. But it still took months to get to the actual transplant. Finally, various medical and personal hurdles were cleared; we had a firm surgery date in early December. We both flew to Chicago for the last few tests.
Those days just before the surgery were simultaneously too quick and too slow. Too slow was the day before surgery, when we were restricted to a diet of only clear liquids. Of all the pre-surgery steps, that was the hardest for me: I could rationalize the uncomfortable tests I’d had earlier as abstract preventive health; it was more difficult to distract my stomach. Thankfully, clear liquids included the lighter shades of beer (I was donating a kidney, not a liver). I savored my beer dinner while others enjoyed the amazing delectables of the hotel sports bar.
Too fast was the morning of the surgery itself, which included a mandatory predawn shower followed by a subzero winter walk from my hotel to the hospital. I am not a morning person; my 4 a.m. self is a sleep-zombie. Once in the hospital, I struggled to keep up with the alarmingly cheery hospital staff as they prepped our concurrent surgeries. In the waiting room, I finally met Michelle and her family. I have little recollection of what was said, however. Even the prospect of surgery and its attendant risks isn’t enough to make me alert at that hour of the morning.
Our surgeries were robot-assisted — a newer surgical technique for organ transplants. It is the subject of much study, which now includes my own amateur sleuthing. I researched the robot, the company, their medical device offerings, the surgery technique (with and without robot), the surgical staff, their relevant published papers, their co-authors’ published papers, surgery videos, training videos, online donor forums and more.
Nothing I learned put me off robotic surgery — in fact, my enthusiasm grew as I learned more about what the robot’s advantages were, like working at angles that human hands can’t maintain for long. Also, I would be able to say I’d had robot-surgery, the fun of which overrode my concerns about risk ratios.
The downside of my surgical robot investigation was the parent company’s lack of interest in answering questions, even journalistic ones. When I asked, the company declined to make anyone available for discussion.
Part of my news nerd job at The New York Times is software development, which means I have a solid understanding of the kind of code one would write for a robot. So I had legitimate questions about the surgical robot’s software maintenance and upkeep. As a developer and a patient, I believed it was fair to ask whether the robot had the most recent software (or why not) and if surgical training had matched any upgrades.
Did I expect the robot to remove the wrong organ based on a bug in its software? No; mountains of lawyers would have seen to that concern. According to my surgeon, the hospital’s robots are maintained by the parent company as part of a yearly fee. As surgery approached and my voice mail messages and emails went unanswered, the implied judgment seemed to be that robot questions were too technical to be relevant — as if I had asked about the operating room’s lighting rather than voicing a legitimate medical concern.
I planned to ask brief questions about the robot the morning of the surgery: Any diagnostics? Did it make cool noises? Was there a green button that said “go!” that I could push? But as they wheeled me into the operating room, anesthesia took hold. I muttered “Robot!”; then there was blackness.
I woke up and it was done. My newly upholstered abdomen had five stitched-up incisions and my whole body seemed to be deer-in-headlights frozen in surprise. It was briefly shocking to see physical damage to my flesh yet have no sensory recollection of it happening. One of my first thoughts: Nobody needs to see this on Twitter. My nurse looked at me, amused, as if to ask, “What about Twitter?” (I must have mumbled it aloud.)
Tiff Fehr, less one kidney, back at work in The New York Times’s newsroom.
All told, I spent less than two days in the hospital. A few days after that, I was well enough to travel home to New York. During and after, I have spent many hours on Twitter and other social networks (but mostly Twitter) responding to kind inquiries after my and Michelle’s health.
I find it remarkable that Twitter’s social network helped make it all happen, just as I had begun to despair of Twitter’s value to me and to journalism. Like Michelle said, “It is a testament to the network and the community” that so many people followed our little story and influenced its happy ending.
This will definitely lead my list of anecdotes about the social network’s better qualities for the foreseeable future. (I also have anecdotes about its worst qualities, but that’s a different story.)