Vivian Jepp, a Port Washington mother of triplets, is desperately seeking a living kidney donor after years of dialysis and a failed kidney transplant.
“I had joint pain, I couldn’t open doors with my hands anymore and had an evident butterfly rash,” Jepp said.
She was diagnosed with systemic lupus 31 years ago, when she was 21 years old after graduating from college. Lupus is an inflammatory disease in which the immune system attacks its own tissue and commonly affects a patient’s joints, skin and kidneys. The Lupus Foundation of America states that lupus commonly strikes women of childbearing age. Ninety percent of people living with lupus are women and mostly develop the illness between the ages of 15 to 44.
Jepp became an elementary school teacher in New York City until her kidneys started to fail three years ago. Though her illness was controlled with medication, her kidneys began to deteriorate. She started dialysis three times a week for four hours a day. Dialysis has helped to maintain her illness, but it is wearing her body down after so many years of treatment. Her energy levels are not getting better and she is prone to tiredness a lot more than the common person. Her lupus controls her blood pleasure, her phosphorus and potassium.
“It’s not easy, but I have learned to cope with it,” Jepp said.
She has three 8-year-old boys who have seen her through the years struggle with illness. Her children are what drive her to continue the arduous battle with her illness.
“My kids see me when I go take my blood pressure or with bandages, going to dialysis every week,” Jepp said. “Most of the time, I am laying down, but that is just our life now.”
Jepp’s older sister, Marina Vlahos, wants her sister to be able to create new memories and experiences with her nephews.
“Although Vivian’s life is not easy, I want her to be able to enjoy being the mom she is for her boys, she is always trying her best to be there for them,” Vlahos said.
She describes her younger sister as someone she looks up to and hopes all the good that Jepp has given to the world comes back to her one day as she is “the bravest person with the biggest heart of anyone that she knows.”
Jepp may not survive the four-plus additional years on the waitlist for a deceased donor. Her best hope is a living kidney donation from an eligible donor. Friends and family have encouraged Jepp to go public and share her urgent necessity for a living donation as her survival depends on it.
“I look up to Vivian, although she is the youngest, her spirit is unwavering and her strength makes her such a positive person,” Vlahos said.
Jepp, always embarrassed to ask for help, was given newly found hope when a mutual friend connected her with Rhoda Schneider.
“Rhoda came into my life only three weeks ago and has lit a fire in everyone,” Jepp said. “She is amazing with her team and the word is spreading to so many people.”
Schneider donated her kidney to her husband 20 years ago and has since been helping those in need of a kidney transplant because of her personal experience and strive for advocacy.
“After donating, I soon learned that others are not privileged to the information readily given and available to me,” Schneider said. “I have been helping living donors donate and recipients to find living donors for the past 17 years.”
A living donation is a voluntary donation of one kidney from someone capable of doing so and an immediate way to help save someone’s life. Donors are tested thoroughly to ensure and facilitate a healthy outcome for both the donor and the recipient. All medical expenses, travel and lodge accommodations would be covered by the organization.
Thereafter, a team of living kidney donors and recipients called Living Donation was formed to spread the message, “Living Donors, Spread Lives.” The message is spreading all over to help Jepp and others find a donor, as well as to increase awareness on the cause. The kidney donation process takes time and typically three out of every four donor applicants are not qualified to donate. The search persists until there is a feasible candidate able to donate. Many of Jepp’s family members and friends cannot donate because of health reasons and simply do not qualify as donors. She needs to find an adequate living kidney donor match of blood type A or O.
The Weill Cornell Medicine and New York-Presbyterian kidney and pancreas transplant program aim is to maximize opportunities for transplantation for all patients who search for care and expertise. The Weill Cornell Medicine will determine the suitability of potential donors for Jepp.
Vlahos said people are spreading the word within the Port Washington community, as many have been contacting the family about the entire donation process and helping in any way they can. Jepp’s Facebook page has reached other states throughout the country and has even been shared in Mexico.
“Times have changed and there is much more information out there,” Schneider said. “I hope that dialysis patients will know that there is another option, which is finding a living donor.”
Living donor kidneys function more efficiently and last longer than deceased donor organs. However, becoming a living donor is a big decision which requires careful consideration. Roughly, 63 percent of Americans have never heard of lupus or know little to nothing about the disease. The symptoms are difficult to pinpoint for the common eye, making awareness and education vital.
“Many people are being educated about the shortage of kidneys and the possibility of living donations,” Jepp said. “That’s a good thing for the many people who are also in my position.”
For further information on kidney donation, contact NYP Cornell at 212-746-3922 or visit www.cornell.donorscreen.org. To learn more about Living Donation, visit www.lkdn.org. To learn more about Vivian Jepp, visit her Facebook page facebook.com/TripletMomNeedsKidney or email TripletMomNeedsKidney@aol.com.