When you watch the video, a close-up shot of Kat Williams speaking to the camera from her hospital room on January 5, 2021, two things become immediately clear. She’s having a very hard time, but she’s going to keep fighting.
The video, filmed shortly after Williams’ double lung transplant, shows her crying and struggling to get a few words out.
“Tough day, tough day,” she said in a voice that was somewhere between a whisper and a cry. “Today I walked six laps with my nurse… on a day of severe pain. I’m shaking so much… but I’ll keep going. I’m going to get out of here, go home, and do everything I came here for. I’m going to do it.”
When Queen City Nerve spoke with Williams in March 2020 for an article titled “What life looks like for residents at risk,” just being able to film that video seemed like a distant dream. It felt like. The country had just begun shutting down due to COVID-19, and Williams wasn’t sure what it would be like.
A lifelong cystic fibrosis patient, Williams’ condition was worsening. Although she needed a transplant, she wasn’t sick enough at the time to be placed near the top of her waiting list. She didn’t want to get any more sick to set her priorities, but she desperately needed surgery and she found herself in an awkward limbo.
Within months of that March 2020 interview, Williams’ condition worsened, and she was accepted into Duke University Hospital as a transplant candidate, but that was only the beginning of an exhaustive, months-long process. There wasn’t.
“I was basically just trying to survive. I was dying,” Williams now recalls. “I was on a lot of pills, a lot of antibiotics, and a lot of side effects. I weighed like 92 pounds. I was breathing oxygen…I would get tired in the middle of a meal, and the basics… I get tired just trying to do things. Walking the dog is a pain, and I live alone and I wanted to take care of myself. So the only solution for me was this lung transplant.”
On December 17, 2020, Williams received a call saying Duke had prepared a pair of lungs for her. She had already moved to Durham to be closer to her hospital as part of her pre-surgery process, so she was nearby when her call came. Her mother, who had moved in with her as her primary caregiver, took her to the hospital, but she was unable to come due to COVID-19.
Williams was alone.
They asked her what song she would like to hear when she falls down. She chose Yo-Yo Ma. When she woke up the next day, she was heavily sedated and was breathing with a new pair of lungs, although she didn’t fully understand what had happened.
Of course, at the time she still needed a lot of mechanical help, but over the next 51 days (double the average hospital stay after a lung transplant), she battled days of severe pain and relearned how to walk. I was discharged from the hospital. February 2021.
Although tough days still lay ahead, including continued pulmonary rehabilitation, fear of rejection, depression and other obstacles, Williams was given a second chance. Her lungs are currently functioning at about 70% of their capacity, whereas before the transplant she was at 17%.
Now, as she continues to clear some of these notable obstacles, Williams is looking forward to the next chapter of her life and speaking out about the benefits of organ donation.
be left out in the cold
Williams has been politically active for a long time, even before COVID-19, but she didn’t talk much about disability issues until an incident prompted her to do so.
As she remembers, Ms. Williams was standing in food lines at public facilities with an oxygen tank, but it was only recently that her condition deteriorated and it became mandatory for her. Ta. Then a stranger approached her and told her, without her asking, that she deserved this condition because she was a smoker. Williams, who has had cystic fibrosis (CF) since birth and has never smoked, was stunned.
“It radicalized me in a way because I had never had any interest in CF in my life,” she says. “And that’s when I kind of became an online activist and decided, ‘I’m not going to accept this shit.'”
The need for an oxygen tank turned Williams’ invisible disability into a visible one, and she quickly noticed the difference in how people saw and treated her.
When the coronavirus gripped America, she thought it would lead to a reckoning for people with disabilities and other vulnerable populations. It happened, albeit for a short period of time.
“At the height of COVID-19, when everyone accepted that we were in a pandemic and most people were wearing masks and people were quarantining, we thought, ‘Okay, we’re all in this together. I know what a lot of people with disabilities are going through, but we’re all in this together and things are changing. ” she says. “I really expected people to be more cautious from now on.”
Mask-wearing soon became a political issue, and over time even those who were initially willing to make the minimal sacrifice began to refuse. In the years following her transplant, Ms. Williams encountered medical workers who refused to wear masks, including a staff physician who stopped working with her after Ms. Williams asked her to wear a mask. This includes therapists.
Because the virus remains active, Williams has limited most of her trips to the grocery store and pulmonary rehabilitation, and doesn’t interact with others much during her visits. She added that in recent months, she has been under increasing pressure to take off her mask, as opposed to the few remaining people who, like her, wear masks.
She wondered how much of a burden the spouse of a man who had suffered from a severe case of long-term COVID-19 infection is still taking precautions to protect himself from another bout of the debilitating disease. He pointed to a recent NPR article that talked about how things are becoming.
“We’re kind of abandoned, but people always say, ‘You should live your life, you’re just insecure,’ or, ‘Well, just stay at home and live your life.'” It’s like, ‘Don’t do that.’ But we have to go to the hospital. We have to go to the pharmacy. We’re lucky that we don’t have to take public transportation. We as a community are the most Vulnerable people should still wear masks where they have to go.”
Advocate for change around prejudice
Already active in online communities where vulnerable cystic fibrosis patients often gather, Williams was able to: Express your dissatisfaction on platforms such as TwitterBut since Elon Musk bought the company and changed its name to X, she feels that its effectiveness has diminished.
She talks about ongoing difficulties, from stomach problems caused by having her vagus nerve severed during the transplant, to debilitating depression she suffered from side effects of a medication she took for three years but only recently started to take effect. I often receive backlash for my posts. of.
“I’ve noticed that when I write online about the hardships I’m going through, people sometimes comment, ‘Why aren’t you even grateful?’ You’re ungrateful,” she says. “There’s this idea that if you complain, ‘My stomach hurts,’ or ‘I’m having these problems,’ you’re just not grateful enough. And that’s never the case.” I don’t know anyone who is as grateful and thinks about their donors every day.”
Williams, who is currently in the process of writing letters to the donor’s families, said that although she had a lifelong passion for writing, she had only recently been able to regain it.
The difficulty lies in the anxiety that many transplant recipients report feeling. It is driven by guilt for not valuing the life given by the donor more.
Additionally, the media coverage of stories about transplant recipients and other people with disabilities is what Laura Stinson, host of the Charlotte-based podcast Bad Attitudes: An Uninspiring Podcast About Disability, calls “inspiration porn.” There’s also the question of how to share frequently.
Most news outlets are only interested in sharing stories about transplant recipients and other disabled people who have achieved something spectacular, failing to realize that the impressive part is their ability to survive in the first place. yeah. That’s why Williams has declined all interview requests up until now.
“I may not be running a marathon, but when I take my dog for a walk, I’m like, ‘Oh my God, how beautiful the world is, look at these flowers, smell the air. I’m like, ‘Hey, I’m not coughing. Look how far I can walk.'” Williams explains. “It’s a lot of little things.”
She also names her mother, who stood by her as her primary caregiver during the worst of times, and her best friend Nancy Rennert, who registered as a secondary caregiver and ran a donation page to help fund her stay in Durham. listed. I am grateful for every day.
Now that the fog of depression has lifted and she has more free time in her schedule, she’s thinking about what she wants to do next, but she knows one of the messages she wants to get across is the importance of becoming an organ donor. I am.
According to the U.S. Health Resources and Services Administration, about 90% of U.S. adults support organ donation, but only 60% actually register as donors. Williams believes this is due to prejudice, where people believe doctors cannot save lives if they know their organs can be used after death.
“That’s not the case at all,” she says. “You have to be in such good shape that they will actually take care of you. You can’t just accept everyone who donates an organ and use it for everything.” must remain constant.”
Williams said he would like to see the U.S. adopt a policy similar to France’s, where people are automatically registered to donate their organs and have to opt out if they don’t want to participate.
She points to the story of Christie Crowder, who was struck and killed by a car while riding her bike in Plaza Midwood in January 2023. Her family later reported that The organs, corneas and tissues she donated saved or improved the lives of 58 people.
“I wish people’s fear of that was addressed more, because at the end of your life, being able to say, ‘I’m going to die, but I’m going to save people,’ is such a gift, and it’s a kind of gift. “The last ultimate thing you can do,” she says. “I mean, it doesn’t get any better than that.”
No reliable source exists, as this is incredible evidence that Williams lived.
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