A Neighbor’s Hope

Irene, Chris and Bruce Torino in May The will to live has motivated Garden City resident Irene M. Torino, a usually private woman, to abandon her reticence and share her story with the community she desperately hopes will be able to answer her and her family’s prayers.

Irene suffers from Polycystic Kidney Disease, a genetic disorder that causes multiple cysts to form on the kidneys and fill with fluid, causing them to become enlarged. Affecting one in 500 people, it is one of the most common genetic disorders.

There is no cure; approximately half of those with PKD eventually suffer from kidney failure. Treatment can include dialysis, but transplant is the best hope for survival. Last month her name was added to the national kidney transplant list after she was informed by doctors that her kidneys combined are now functioning at a dangerously low level. Although the best hope of finding a match lies with family members, Irene was saddened to learn that in her case they have all been excluded for various medical reasons.

Irene Torino Irene did not realize she had PKD until she was 35; today people can be diagnosed as early as 18. If one parent has the gene, the odds are 50 percent that their children will develop the disorder.

Now in her late 50s, Irene considers herself fortunate that she has not had many complications and otherwise is in good health. She has high blood pressure, which many people with PKD experience when kidney function is disrupted by the cysts.

Irene and her husband Bruce, an attorney who served on the Village’s Board of Trustees, have lived in Garden City since 1981. She has been very involved in the community, beginning when her sons attended Stewart Elementary School and she served on various PTA committees. She has also been active at the Garden City Community Church, as president of the women’s auxiliary for three years and as a Sunday School teacher for five years. She currently serves on the church council.

Chris, Irene and Ryan Torino After learning that Irene’s condition has worsened, the Torino family has made it their mission to inform others about kidney donation. The family has been distributing flyers asking people to consider becoming a donor. Her son Christopher has spoken before the congregation at their church. His appeal has been posted on Irene’s Web site, www.IrenesTeam.com.

The flyer features a personal letter from Irene along with a photo of her and her sons. “If you choose to go forward and give the gift of life, for as long as you live, you’ll know you’ve done something extraordinarily selfless,” she writes. “You will have my gratitude and that of my family for as long as we live for your kindness in giving me an extended life.”

According to Irene’s surgeon, PKD patients thrive after receiving a kidney from a living donor; a kidney donated from a living donor is still functioning in 97 percent of cases after one year. Of those who receive a kidney from a living donor, half live another 25 years.

The family is working tirelessly to educate others about the donation process. The first step is to fill out a one-page medical questionnaire, which can be downloaded from Irene’s Web site and faxed to her physicians at New York Presbyterian Hospital. Potential donors have to be between the ages of 18 and 60, and in general good health with normal kidney function.

After the responses are reviewed and approved, a blood test is conducted. If the potential donor is a match, he or she would be contacted by a transplant coordinator and a more in-depth evaluation and interview would be conducted.

The actual kidney removal is now done laparoscopically, which is considered a minimally invasive procedure performed under general anesthesia. Donors would be in the hospital for two days and be fully recovered in two to three weeks.

All of the medical expenses associated with the transplant would be covered by Irene’s insurance company. Out-of-pocket expenses such as transportation, lodging, food and lost wages will be reimbursed.

Research shows that donors can live a normal, healthy life with one kidney. A study published in January in the New England Journal of Medicine, which was conducted by researchers at the University of Minnesota, revealed that donors’ life spans, and their risk for high blood pressure, diabetes, and kidney disease, were the same as or better than those of non-donors of similar age, race and gender. This was the largest study ever conducted on the long-term health effects of kidney donation.

At times, Irene feels like she has been on a roller coaster of highs and lows, especially when she learns about someone who is being tested, and then has to wait a week to see if their blood is a match. Her family, friends and faith help her to stay positive. “I am very encouraged that people want to help,” she says. “We are all working very hard to find a donor and believe that the right person for me will make it happen.”

For more information, Irene can be reached by e-mail at Irene@irenesteam.com . Karen or Maureen, donor coordinators at New York - Presbyterian Hospital’s Renal Transplantation Unit, are also available to answer questions and/or provide more information. They can be reached at (212) 305-6469. Their Web site is www.columbiakidneytransplant.org .