A helping hand

By Stacey Solt
The Times News, Lehighton, Pennsylvania

    When Howard Kindred, Sr. needed a liver transplant in 2995, he faced a maze of medical jargon and treatment options.

He received support and encouragement from his doctors and medical support team, of course. But his 18-month wait for a new lever was filled with frustration and disappointment. During that time, he gathered information or future transplant patients and vowed to ease the process of receiving an organ donation.

Now the founder and CEO of the Northeastern Pennsylvania Transplant Support Group *NEPATSG), Kindred works with hundreds of local residents in need o an organ transplant, bring patients and doctors together to answer questions, alleviate ears and other hopes for the future.

"They're speaking to someone who has gone through this." he said. "I understand the process, the frustration."

The group offers several services or its members, including the Transplant Express program. This program, made possible by group volunteers, provides transportation for patients who have no other way to travel to transplant operations, dialysis and medical appointments.

NEPATSG also meets or monthly meetings at the Pocono Medical Center on the second Tuesday of each month, from 7 - 9 pm. All people affected by transplants are encouraged to attend, from those in need of transplant to transplant recipients. family members are also welcome. A doctor is present at most meetings to answer medical questions.

Many patients and family members note that the support and friendship o the group is invaluable especially at their most vulnerable moments.

"It's so important to have this support," aid Debra Bertone, the wife of a transplant recipient in Bushkill. "It was just wonderful, to be able to ask questions."

Her husband, Peter Bertone Jr. received a successful liver transplant in 2002, two years after being diagnosed with Hepatitis C. Debra attended meetings with her young son after realizing that she needed more information about Peter's treatment options.

"You have to be your own advocate." she said.

Though her husband is doing well now, she continues to play an active role in the support group. Many transplant recipients continue to attend meetings, both to offer encouragement and to cope with the long-term struggles of receiving a transplant, including the side effects of anti-rejection medication.

It is this variety of personal experience that makes the program so successful, said Debra

"You don't just get your organ and live happily ever after," she added. Each person's story is unique, and their personal struggles before and after a transplant are also unique. "Even though every person has the same goal, the journey is not always the same."

A lot of people like to be here after their transplant, to help others still waiting." Kindred added. "And there are always questions, even after the surgery."

The program also features a Hepatitis division, which works to break the stigma surrounding the disease.

"There is so much stigma around Hepatitis C." said Kindred, who was diagnosed with the disease in 1993. He believes that he received Hepatitis from a blood transfusion in the 1970's, and now encourages people at risk to test for Hepatitis. NEPATSG provides testing kits for $10, well below their retail cost, in the hopes that people will become diagnosed sooner and receive treatment.

NEPATSG also works actively in the community, speaking with high school and college students and other organizations. They also provide literature at many health fairs.

The non-profit group is run entirely by volunteers, including Kindred. He keeps costs down by housing the groups office in his home.

As of now, the group hosts 56 active members and more that 300 non0active participants. Kindred hopes to reach more transplant patients throughout the area in 2009 and expand the reach o the support Group

Kindred noted that he is now more than just the founder he also used the support groups services during his second liver transplant in April 2008. Instead of renting a cab, as he did or his first transplant, he requested a ride from the groups Transplant Express program for medical appointments, and also received transportation on the day of his transplant.

"It took a big load off of my mind" He admitted. "You don't realize how valuable this program is for people until you use it yourself."

For more information about NEPATSG visit www.nepatsg.org. Contact the main office at (570) 223-2833 or (866) 869-1211.