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Cat Williams Advocates for Organ Donation After Double Lung Transplant

Spreading the message behind why becoming an organ donor is important

Cat Williams visits Rep. Jeff Jackson post-transplant to discuss disability issues. (Courtesy of Cat Williams)

Two things are immediately apparent upon viewing the video, a close-up shot of Cat Williams speaking into the camera from her hospital room on Jan. 5, 2021: she is struggling greatly, but she is going to keep fighting.

In the video, shot shortly after Williams’ double lung transplant, she fights through tears to get her short sentences out.

“Hard day, tough day,” she says in something between a whisper and a whimper. “I did walk six laps today with a nurse … on a bad pain day. I’m shaking so much … But I progress. I’m gonna get out of here, and I’m gonna go home, and I’m gonna do all the things that I came in here for.”

When Queen City Nerve spoke with Williams in March 2020 for an article titled “A Look at the Life of a Resident at Risk,” just being able to film that video was a dream that felt so far away. COVID-19 had just led to shutdowns across the country, and Williams was unsure how any of it would play out.

A lifelong cystic fibrosis patient, Williams’ condition was worsening. She needed a transplant, though at the time she was not quite sick enough to be placed near the top of the waiting list. She found herself in an awkward limbo, not wanting to get more sick in order to be prioritized, but desperately in need of the operation.

In the months after our March 2020 interview, Williams would become sicker, which led to her being accepted as a potential transplant patient at Duke University Hospital — just the beginning of an exhaustive months-long process.

Cat Williams in her hospital room on Jan. 10, 2021. (Photo courtesy of Cat Williams)

“I was basically just trying to survive. I was dying,” Williams recalls now. “I was on a lot of pill medication, tons of antibiotics, tons of side effects. I weighed, like, 92 pounds. I was on oxygen … You’d get tired halfway through a plate of food, or just trying to do any kind of basic anything. Walking the dog was hard, and I was living alone, and I was trying to take care of myself. And so the only way out for me was this lung transplant.”

On Dec. 17, 2020, Williams got the call: Duke had a pair of lungs for her. She had already moved to Durham to be closer to the hospital as part of the pre-operation process, so she was nearby when the call came in. Her mother, who had moved with her as her primary caretaker, took her to the hospital but could not come in due to COVID-19.

Williams was alone.

They asked her what song she would like to hear as she went under. She picked Yo-Yo Ma. She woke up the next day, heavily sedated, not fully comprehending what had happened, but breathing through a new pair of lungs.

At that time, of course, she still needed plenty of help from machines, but over the next 51 days — twice the average hospital stay following a lung transplant — she fought through the bad pain days and relearning how to walk until she was discharged in February 2021.

Tough days were still ahead — continued pulmonary rehab, a rejection scare, depression and other obstacles — but Williams had received her second chance. Her lungs currently function at about 70% of their capacity compared to the 17% she experienced pre-transplant.

Now as she continues to clear some of those outstanding obstacles, Williams is looking forward to the next chapter in her life and speaking out about the benefits of organ donation.

Being left out in the cold

Even before COVID, Williams has long been a politically active person, though she didn’t speak much about disability issues until one incident inspired her to start.

As she remembers it, Williams was standing in line for food in a public establishment with an oxygen tank in tow, something that had only recently become a requirement for her as her condition worsened. That’s when a stranger approached her and told her, unsolicited, that she likely deserved her condition because she was a smoker. Williams, a cystic fibrosis (CF) patient since birth who has never smoked a single cigarette, was dumbfounded.

Cat Williams before her transplant.

“It kind of radicalized me because I wasn’t really out about CF at all in my life,” she says. “And that’s when I became a sort of online activist, just deciding, ‘I’m not taking this bullshit.’”

The need for an oxygen tank had turned Williams’ invisible disability into a visible one, and she immediately saw a difference in how people looked at and treated her.

When COVID clamped down on America, she thought it would lead to a reckoning over disabled people and other vulnerable populations. For a short time, it did.

“At the height of COVID when everyone accepted we were in the pandemic and most people were masking and people were isolating, it kind of felt like, ‘Okay, we’re all in this together. You’re now seeing what a lot of disabled people go through, and we’re all in this together and things are changing,’” she says. “I really had hope that people were going to be more careful now.”

Rather quickly, masking became a politicized issue, and as time went on, even those who had originally been willing to make the smallest sacrifices began to refuse. In the years since her transplant, Williams has run into health care workers who refuse to mask, including a personal physical therapist who stopped working with her because Williams asked that she mask up.

With the virus still active, Williams has limited her trips mostly to the grocery store and pulmonary rehab and doesn’t engage much with other people during those visits. She adds that, in recent months, pressure has built for those few remaining people like herself who mask to unmask.

She points to a recent NPR article in which the spouse of a man who had suffered from a severe case of long COVID speaks about how much of a burden he is because he still takes precautions to protect himself from another bout of the debilitating illness.

“We’ve kind of been abandoned, but people constantly say either, ‘Well, you should just live your life, you’re just anxious,’ or they say, ‘Well, just live at home. Don’t go out,’ and it’s like, but we have to go to hospitals. We have to go to pharmacies. I’m lucky I don’t have to go on public transit. We should still, as a community, mask in places where our most vulnerable people still have to go.”

Advocating for change around stigmas

Having already been active in online communities where vulnerable cystic fibrosis patients often congregate, Williams has been able to express her frustrations on platforms such as Twitter, though she’s finding that less effective since Elon Musk bought the company and renamed it X.

She often receives pushback in her posts about her ongoing difficulties, ranging from stomach issues that resulted from the slicing of her vagus nerve during the transplant to a debilitating depression she suffered as a side effect of meds she took for three years but has recently come off of.

“I’ve noticed sometimes when I write about difficulties I’m going through online, sometimes people will comment, ‘How are you not even grateful? You’re ungrateful,” she says. “There’s this idea that if you complain about ‘My stomach hurts,’ or ‘I’m going through this issue,’ that you’re just not grateful enough. And that’s never the case. I don’t know anyone that’s had a transplant that isn’t just 150% grateful and thinking about their donor every day.”

Williams is currently in the process of writing to her donor’s family, though despite a lifelong passion for writing — one she’s finally been able to pick back up as of late — she says it’s the hardest thing she’s ever had to write.

The difficulty comes in the insecurity that many transplant recipients have reported feeling, one driven by guilt for not having done more with the life awarded them by their donor.

There’s also the issue of how the media often shares stories of transplant recipients and other disabled people, one that Laura Stinson, host of the Charlotte-based podcast Bad Attitudes: An Uninspiring Podcast About Disability, calls “inspiration porn.”

Most outlets are only interested in sharing stories about transplant recipients or other disabled people who have accomplished some grandiose thing, not realizing that the impressive part is the ability to survive in the first place. It’s why Williams has turned down all interview requests until this one.

“I may not be running marathons, but when I take my dog for a walk, it’s like, ‘Oh my God, look how beautiful the world is, look at these flowers, smell the air. Look, I’m not coughing. Look how far I can walk,’” Williams explains. “It’s a lot of little things.”

healing process of lung transfer
Cat Williams walking with an oxygen tank to support her breathing. (Courtesy of Cat Williams)

She also names her mother, who stood by her as a primary caregiver during her worst times, and her best friend Nancy Lennert, who signed up to be her secondary caregiver and ran the donation page that funded her stay in Durham, as two people she is grateful for every day.

Now as she looks ahead to what she’d like to do next, with the fog of depression lifting and more free time on her schedule, she knows one message she’d like to spread is the importance of becoming an organ donor.

According to the US Health Resources & Services Administration, about 90% of adults in the US support organ donation, but only 60% are actually signed up as donors. Williams believes its due to a stigma she’s heard reported in which people believe doctors won’t do as much to save your life if they know they can use your organs once you’re dead.

“It’s not like that at all,” she says. “They’ll actually take better care of you because you have to be in such good shape. You can’t just take every person that donates their organs and use them for everything. The body has to be in a certain condition.”

Williams says she’d like to see the US adopt a policy similar to France, in which people are automatically signed up for organ donation and need to opt out if they don’t want to be included.

She points to the story of Kristie Crowder, killed by the driver of a car who struck her while riding her bike in Plaza Midwood in January 2023. Her family later reported that her donated organs, cornea, and tissue saved or improved the lives of 58 people.

“I wish people’s fear of it would be addressed more because it’s such a gift to be at the end of your life and be like, ‘I’m dying, but I’m going to save people,’ and that’s just kind of the last ultimate thing you can do,” she says. “I mean, there’s nothing more amazing than that.”

There can be no trusted source, as Williams is the living, amazing proof.

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