Maryann Palumbo of Southold, 55, is in need of a kidney and her friends and family are out sporting T-shirts displaying exactly that information in hopes of locating a willing and compatible donor.
Ms. Palumbo, who owns North Road Deli and Caterers in Southold with her husband, Rick, was diagnosed with Alport syndrome two years ago. Alport syndrome is a rare genetic condition characterized by kidney disease, hearing loss and eye abnormalities, according to the National Institute of Health.
The normal range for glomerular filtration rate, or GFR, which measures how well a person’s kidneys filter blood, is 60 or above. When Ms. Palumbo first received her diagnosis, her kidneys were about 40% functional. As of Monday, they were just 16% functional. If that decreases to 5% kidney function, Ms. Palumbo will have to start dialysis.
Realizing this prompted her to begin searching for a kidney via the T-shirts, which she designed and distributes for free. On each shirt is her blood type and a contact number people can call if they think they or someone they know might be a possible donor. Ms. Palumbo has Type O blood, meaning donors would have to have the same blood type to be compatible.
“I had to get under 20% to get on the renal transplant list,” she said at the deli Monday. She was placed on the list during the summer, and has since had to make dietary changes to improve her health and prevent the disease from worsening.
“I’ve had to change my diet completely,” she said. “I cannot have any salt. I have to watch potassium as well, but salt is the big one and there is salt in everything.”
Her daughter, Alexa, 21, added that her mother is also restricted in terms of protein, to fish and chicken — and only small amounts of either. Through process of elimination, Ms. Palumbo said, she now feels her diet is under control.
The Palumbos both have backgrounds in cooking; he’s a chef and she attended culinary school when she was younger. Her exposure to food, alongside her appreciation for traveling, going out and trying new restaurants, she said, is much more limited now.
“Travel is out, pretty much,” she said. “I mean, we’re going to Florida. I was thinking about going to Mexico, maybe to Europe, and those are out.”
To address her dietary needs, she has turned to baking — a favorite pastime. She joked that she makes a good banana bread and said that despite the difficulties of having to eat virtually flavorless food now, salmon is her favorite meal.
“It’s still fairly difficult,” said Alexa Palumbo. “If we go out to eat, really, she can’t have much and we have to test the food before she eats it sometimes or when she thinks it has salt.”
Alexa said that the part of her mother’s diagnosis that has been most difficult has been seeing her limited mobility and functionality.
“You can’t do as much, you can’t walk as much, you can’t go as many places,” she said to her mother, who was sitting next to her. In full agreement, Ms. Palumbo said she often gets sleepy and needs her daughter or husband to drive her to doctor’s appointments and on long-distance outings. She credited her family and friends for being a strong support system.
For Mr. Palumbo, the hardest part has been waiting.
“It’s always the wait,” he said. “We’re going to Florida and we’re going to go to a hospital over there, set that up, so it’s a process. And the more you talk about it with people, the more you have avenues that you never knew you had. People who are in the same boat, people who connect with somebody who can help you, moral support for people you have spoken to. The process of the unknown, I think, that’s the hardest part.”
Mr. Palumbo checked to see whether he could donate a kidney to his wife, but he was not compatible. Alexa, however, is a potential candidate. She’s looking to begin the process of finding out whether she is a match soon, but there is no guarantee she will be or that all conditions will be suitable for a kidney donation.
To ensure that all bases are covered, and since Ms. Palumbo could be on the waiting list for up to four years — a number that can increase once dialysis starts — Mr. Palumbo joined a paired exchange program. In this program, certain transplant centers help incompatible pairs of recipients/donors swap to potentially find a match.
“I’m A, she’s an O,” Mr. Palumbo said, citing their different blood types. “So, if somebody needs an A, I give it to them and vice versa, they give it to Maryann. The avenues are starting to broaden out, so the opportunity could be here sooner than we realize.”
Anyone with Type O blood who thinks they might be a possible donor is encouraged to contact Eneida Hernandez, R.N., pre-transplant coordinator for kidney transplantation at Stony Brook Medicine, at 631-444-1781 or [email protected]. You can also call Ms. Palumbo directly at 631-379-9088.