Quest to Find a Kidney Donor

Quest to Find a Kidney Donor
Jacquelyn Maher-Brucia needs a kidney and with the support of a loving group of friends is going fast forward to find a living donor.

By Judy Mottl | Email the author | February 22, 2011

Jacquelyn Maher-Brucia is doer, a go-getter, a person who takes action and who believes in the adage that if you’re not helping to solve a problem, then you’re part of the problem.

The former school board trustee, and recipient of the George Washington Medal of Honor for individual achievement in community service, has been a community activist for decades. She’s been active in many village organizations, including the Babylon Village Beautification and the Babylon Village Youth Project. She is a charter member of the Pilot Club of Babylon and has taught religion at Our Lady of Perpetual Help in Lindenhurst.

Now, though, the grandmother of two is the one needing help and it’s not the most comfortable role for someone who is normally doing the helping.

Maher-Brucia needs a new kidney and she’s doing whatever it takes to get the word out to find a live donor, which is the best transplant scenario given that the deceased organ donor list has an 11-year wait. A decade on dialysis isn’t a future anyone wants to contemplate.

A few months ago there was hope she would get a new kidney as a friend proved to be a donor match. But medical tests revealed a problem with the donor’s health and the transplant surgery was not viable.

Getting so close to a healthy life and having the opportunity fade quick would knock most people down. But not Maher-Brucia, who has lived in the village for 30 years.

“I’m going with a proactive approach to find a kidney and at the same time going on with my life and doing my thing,” she says. “What I need is someone to donate and give me a kidney.”

With the support of a close group of friends she has launched a web site to tell her story and educate people about the need for organ donations and the organ donor testing process, which is very often misunderstood and feared for no reason. The group has also set up a special phone number, 631-991-3414, that interested donors can call to get insight on testing. There is also a Facebook page that provides information as well.

The testing is free and requires three trips to Weill Cornell Medical College in the city. The tests are standard medical tests that most people undergo during comprehensive annual exams.

“It’s not scary and we have all the information and also first-hand knowledge from my longtime friend who went through the process,” says Maher-Brucia.

Oftentimes someone needing a new kidney can turn to family members to find an donor. But that’s not an option for Maher-Brucia. She suffers from a genetic kidney disorder that most of her family has suffered from as well. Her son has already been diagnosed as having the same ailment.

But the illness and news last fall she needed a transplant hasn’t stopped the chief financial officer for Atlantic Auto Mall in West Islip from working fulltime and staying involved. She helped arrange the second annual gala fundraiser for the National Kidney Registry before the Christmas holiday.

In the meantime she’s on her quest to find a donor as soon as possible. She hopes to put off dialysis for as long as possible as studies indicate that the less time a patient is on dialysis, the higher the survival rate of the transplanted kidney.

Although more than 6,000 living donors in the United States donate their kidneys every year, finding and matching donors with recipients is a cumbersome and complex system as there are dozens of transplant programs nationwide and no central nationwide clearinghouse.

That's why Garet Hil, a Babylon resident, launched the National Kidney Registry in 2008. He learned all about the challenges of finding a donor when his then 10-year-old daughter required a transplant.

"As we struggled through the complex and difficult process of finding a compatible donor, it was clear to me that there was a better way," explains Hil in a press statement on how the organization was founded.

"If all incompatible donors and recipients were simply listed in one common pool and modern computer technology was used to find matches, the problems related to incompatible donors would be a thing of the past. The National Kidney Registry was founded to make this vision a reality."

The Registry ultimate goal is to help kidney recipients find a suitable living donor within a six-month time frame for optimal survival outlook. Transplant recipients, on average, live twice as long as patients who remain on dialysis.

In two short years the Registry has facilitated 200 kidney transplants and the average matching time is just 10 months, compared to the average industry wait of six years.

Local residents interested in being tested as a potential kidney donor can call 631-991-3414 . The ideal donor is between the ages of 18 to 65 and does not suffer from high blood pressure.

http://babylonvillage.patch.com/articles/village-residents-quest-to-find-a-kidney-donor