'A Kidney For Phyllis': A Southampton Resident's Search For A Life-Saving Donation

Phyllis Katz was excited.Her daughter, Samantha Cohen, was visiting last Tuesday, and they had plans to meet up with friends for dinner that night at La Parmigiana in Southampton, one of Ms. Katz’s favorite restaurants. She was especially looking forward to the small amount of tomato sauce her restrictive diet allows each week.

Ms. Katz’s vibrant personality was on full display as she sat in the living room of her Southampton Village condo, resting her head on her pregnant daughter’s shoulder, nestled next to a small decorative pillow with the phrase “If stress burned calories, I’d be a size 5” stitched on the front.

Ms. Katz, who turns 67 next month, did not appear stressed, which is astonishing, considering what her life has been like in recent years.

The longtime Southampton resident, who grew up in Sag Harbor, is in Stage 5 kidney failure, signifying end stage. She has been on dialysis three days a week since July 2017 is hoping for a kidney donation.

Renal failure, along with other health issues, have taken a physical toll on Ms. Katz, but her spirit remains intact.

Ms. Katz’s kidneys have been slowly deteriorating over the last 20 years due to various unrelated health issues, she said. An unexpectedly long and arduous hospital stay in October 2016, which entailed a surgery and multiple infections, made her condition worse, leaving her with less than 15 percent functioning in her two kidneys. Ms. Cohen was her mother’s primary caretaker during that time, making the trek back and forth from her home in New York City to Southampton Hospital to help oversee her mother’s care and recovery.

Ms. Cohen is Ms. Katz’s only child, and is not a candidate as a donor since she is pregnant with her first child, a boy, due in July. Another family member was eager to donate—her 89-year-old mother, Gertrude Katz—but she was ruled out because of her age.

Ms. Katz is someone who believes she has a lot of living left to do, as evidenced by a joie de vivre that, it seems, couldn’t be contained if she tried—and she doesn’t. She’s the type of woman who makes herself exceedingly relatable, with a gift for self-deprecating humor, paying compliments that feel entirely genuine, and instantly finding things to commiserate over with strangers. The kind of person whose ease in social settings is enviable. The kind of person one would immediately want to collect as a friend.

The essential elements of Ms. Katz’s personality have given her the strength to battle a long list of health complications that led to the need for a new kidney. While she is registered on a deceased donor list, doctors have told her that her best chance for survival would likely come from a living donor.

Finding a living donor is not easy, but Ms. Katz has a few factors in her favor. Although she currently needs dialysis three days a week, for three hours each time, Ms. Katz is still healthy enough to be considered a viable recipient. She also has Type A blood, a popular blood type that can receive a donation from someone with Type A or Type O (universal donor) blood.

Despite her ease in social settings, Ms. Katz admits that she felt uneasy when her doctors and nurses advised her to actively pursue and court potential donors by putting the word out in the community and via social media. Ms. Cohen has been the main catalyst in that effort, even making small business cards with a picture of a frowning cartoon kidney, thermometer in its mouth, the words “A Kidney For Phyllis” on the front, and information about kidney donation and who to contact on the back.

Kidney donation is safer and more reliable today than it was years ago, Ms. Cohen explained, thanks to more rigorous vetting to determine if someone is an appropriate match. Having the appropriate blood type does not necessarily mean someone will be a match, but it is the first step in screening as a potential donor.

According to the American Transplant Foundation, kidney donors remain in the hospital for an average of three to seven days, and should expect four to six weeks for a full recovery.

According to National Kidney Foundation, 26 million Americans have chronic kidney disease, and more than 101,000 people are on a transplant waiting list. On its website, Stony Brook says it has performed more than 475 transplants using living donors.

Because the kidneys are responsible for filtering excess water and waste out of the blood, people with poorly functioning kidneys often end up on dialysis, which does the work of the kidneys, removing the blood from the body via a fistula—the joining of an artery and vein under the arm to provide access to the bloodstream—directing it into a machine that cleanses the blood and then returns it to the body.

The process of dialysis itself isn’t particularly painful, but there is a significant amount of discomfort and many side effects. Dialysis days are essentially lost days for Ms. Katz—after the three-hour procedure, she is too exhausted to do much, and she has several times experienced a “bleed-out” after the procedure. The fistula has created numbness and discomfort in her arm, particularly vexing because it is in her right arm, which she writes with, and because she already suffers from arthritis. Typically the fistula is inserted in the non-dominant arm, but Ms. Katz’s veins in her left arm were deemed too thin.

And, of course, there are dietary restrictions as well—for instance, only half of a banana per week, out of concerns about too much potassium in the blood, and limitations on her beloved tomato sauce.

Ms. Katz is a veteran of hip surgery and a spinal fusion, but her daughter describes chronic kidney disease as “a daily grind.” The constant interruptions and restrictions dealing with kidney disease places on life—the side effects, constant doctor appointments, exhaustion—would be tough for anyone to take, but it’s particularly hard for an active woman like Ms. Katz.

The 1969 graduate of Pierson High School ran her own cosmetics and clothing boutique shop, Phyllis and Samantha, in Sag Harbor for years, at times donating makeup and cosmetics to women living at The Retreat, a local domestic abuse shelter, while also providing free makeup lessons for women there. Ms. Katz has also been a real estate agent for 20 years, and still is listed as a referrals broker for Corcoran.

She loves lunching and dining at local restaurants with friends and family, taking walks through Southampton Village, and longs for the days when she could head into the city to catch a Broadway show with her daughter.

Still, Ms. Katz prefers to dwell more on her fortunes than what she misses. She refers to herself as “lucky” when speaking about her support network, the head of which is her daughter, whom Ms. Katz has nicknamed “The Sergeant.” Ms. Cohen rolls her eyes and laughs when her mother brings up the nickname. Ms. Katz points out that her daughter can be “a little bossy,” before wrapping her arms around her again.

“Who could ask for a better daughter?” she says.

Ms. Cohen has quarterbacked her mother’s care from her New York City home, traveling east roughly every other weekend to be with her mom. Ms. Cohen coordinates doctor appointments and was instrumental in getting her mother on a kidney donation list, among other tasks, while also working a full-time job as the Department of Education’s Manager of Climate and Culture in the Bronx.

Ms. Katz said she also is grateful for the support of her brother, Sag Harbor resident Hank Katz, a phys ed teacher at Sag Harbor Elementary School, who often picks up her groceries, or drives her to appointments when he can. She added that her sister, Susan Levitt, who lives in both the city and Water Mill, has been a big help, as well as sister Jane Levy, who resides in New Jersey and North Haven.

She’s also received support from Temple Adas Israel in Sag Harbor, where her family have been congregants for years. Her father, Donald B. Katz, was, for a time, the president of the temple.

Ms. Katz says she is hopeful that she can continue to enjoy quality time with her family and friends who have supported her, and the anticipation of welcoming her first grandchild in a few months has made her desire to regain a better quality of life even stronger.

“I really hope I get this,” she said. “I really want to be around, to babysit my grandson and enjoy life every day.”

Anyone who would like to be screened as a potential donor can contact the Stony Brook Transplant Office at (631) 444-6944, or contact Ms. Cohen at scohen11963@gmail.com.