When you give someone the gift of life, what does the package look like? Is it wrapped with beautiful paper, with ribbons and bows? Or presented in a gift bag?
To Brocton resident Dudley Williams, it's in the form of being able to watch his oldest grandchild Christina graduate from high school this year, and enjoying a normal, healthy life with his family after being given a kidney to keep him alive.
Williams, his wife, Marlene, and son, Dudley Jr., were three of many who attended a Meet & Greet celebration Sunday at Wing City Grille sponsored by Kidney Connection, an interactive online meeting place for people who need kidneys, and donors who would like to give that gift.
OBSERVER?Photo by Ann Belcher
Women on a Mission proved their hard work pays off as they shared experiences and saw familiar faces at the Western New York Kidney Connection Meet and Greet Sunday at Wing City Grille. Left to right are: Tina Long, of Buffalo; Jeannette Ostrom, of Jamestown and Patti Merritt of Grand Island.
Western New York Kidney Connection was formed in 2005 by four women, who are passionate about helping to provide the gift of life to everyone who is in need of a kidney transplant.
The inspiration of Jeannette Ostrom, of Jamestown, was ignited when her son Paul, was refused a living donor kidney transplant, because the donor was found on the internet through a similar site called matchingdonors.com.
The policy at Buffalo General Hospital, one of two Erie County hospitals in this area that specializes in kidney transplants, was such that they would not transplant from a donor who was sought, or found on the web.
After finding Patti Merritt, of Grand Island and Diane Krzyanowski of Akron via a Buffalo News article about Jeannette's brother, who was a live donor for someone else, the women decided something had to happen to change this policy. Tina Long, of Buffalo, joined with the three after asking Ostrom if her son would be willing to be in an exchange program with her father. Jeannette could donate to Tina's father, and Tina could donate to Paul. Although the exchange never took place because of blood types, the union of the four women inspired the donor exchange program section of the website, and all four of them formed a dedicated quartet seeking to get BGH's policy changed.
After convincing hospital brass and CEO's to change the policy for donors found online, and creating a user-friendly and successful website, the Women on a Mission, as they are known, were graciously handed an Excellence of Achievement Award from the National Kidney Foundation.
Williams had waited on a standard list for three years before his successful transplant surgery in June of 2009. His son Dudley was tested to see if he was a match to donate to his father. When doctors expressed concern that if the 32-year-old needed both of his own kidneys later on in his life, his health could be jeopardized, the father refused to proceed.
"He wouldn't take mine," said the younger Williams.
"I was very proud of my son when he volunteered to donate, but when those doctors said it would be a risk to him, I said 'No way, I'm not going to put my son's health in jeopardy,'" the father stated.
Williams' success story can be called a success, with the involvement of Kidney Connection, and their ability to link Ted Morton to the Williams family.
Morton, of Cheektowaga, read an article in The Buffalo News about kidney donation, and decided he wanted to donate. He wanted one of his own kidneys to go to someone with a rare blood type, like his, A/B+. Because the site clearly lists the person's blood type in their online biographies, Dudley Williams was able to be immediately linked with Ted Morton, and the two would move toward a life saving and life changing experience.
Morton stated that his eligibility process to be Williams' donor was "only a small inconvenience, but one of the greatest things I have ever done in my lifetime."
"There's a little risk, there's a little inconvenience with appointments and taking some time off of work, but this is truly one of the greatest things I have done in my life, and if I could grow my kidney back, I would donate it all over again" stated Morton.
Healthy people who are able to donate, states Morton, should consider giving this important gift to someone they know, or don't know. As he and his wife dined with the Williams' and others, he told of the process that went into declaring him eligible to give his kidney over to Williams. He first had to be tested to determine that his kidneys were functioning at 100%. He noted that physicians on the transplant team at Buffalo General bend over backwards to make sure that the lives of the donors will not be in danger by removing a kidney to give to someone else. After his procedure, Morton stated, he was home in a few days and went back to his job as a self-employed salesman sooner than expected.
Williams joked that when he was first contacted by Morton, he was skeptical. Unfortunately being on a list for public view, the Williams family had been contacted by phone from someone who was willing to donate a kidney in exchange for a large sum of money.
The two laugh as they relate their story now, but Morton stated, "It never occurred to me how many people are out there that would do something like that, to solicit money from someone in need." Several of the other people in need of a transplant related similar stories at Sunday's event.
"Without this, I would've died I owe him my life," said Williams of his donor, whom he celebrated July 4th with this year.
"A wonderful friendship has come out of this I look at him as a hero and a lifesaver, thanks to Ted, I have a brand new life" stated Williams with an ear to ear smile.
Morton hopes to see a grassroots shift in government and society that will call for more people "coming off the sidelines" and donating a kidney to someone in need.
"I think even if there were some kind of federal or state credit as an incentive to get people to donate that you would see more people willing to do this. Five to six people die every day because they don't get a kidney that's ridiculous" stated Morton.
"It takes people like us, and organizations like Women on a Mission and Kidney Connection, it's going to have to be a grassroots thing to say 'policies need to change'" stated Morton.
"With governmental changes to healthcare, I really hope to see some changes that make it easier for donors to give to those in need," he stated.
On May 24 of this year, the New York State Senate unanimously passed a bill which calls for an online signature for New Yorkers who want to register to make an anatomical gift when they pass on. According to the Senate bill introduction, New York has a significantly low donor registration rate, and the online registration process could work to gain at least 75% of potential donors.
Morton is also staying abreast to any changes that may take place following a June announcement by a Westchester County, NY Assemblyman who is proposing that all New York drivers would be intentional organ donors unless they signified by opting out.
According to a June 30, USA Today article, Assemblyman Richard Brodsky is pushing for the legislation following his daughter Julianne's second successful organ transplant. The article illustrates that almost 63% of U.S. adults 18 years of age or older, are not registered in a state donor program.
Lisa Ginnetti of Eden, and Jessica Frysz of Cheektowaga are two women who would benefit from increased donors in New York State.
Ginnetti who is currently waiting for a kidney believes that changes such as electronic signatures, hospital policy changes and program enrollment could save more lives than just hers.
"People need to be very aware that this is very important lack of knowledge can kill you right there, and knowledge is power" she stated.
"I haven't heard any updates on the drivers' license opt-out registration plan, but it's definitely a good direction to go."
Ginnetti attended to meet with others who are in her situation. She has gone for routine annual "work-ups" to Buffalo General to keep her eligibility for a kidney refreshed, and states that this has been an "emotional experience" for her to be in need of a kidney.
"It's really giving me some hope to wait, and I'm trying not be give up hope of finding a donor. Some of the frustration that I experience down the road will be worth it once I get a kidney" said Ginnetti.
"I felt very blessed to be invited here today, and I'm very appreciative of what I've learned and hope that some good comes out of it. It's very important for people to act on their thoughts if they have ever thought they would want to be an organ donor. The recipient would be forever grateful, as I would, for someone to change my life in so many ways I can't put into words what a hero that person would be to me."
Ginnetti was taking home a DVD from Sunday's event to show to possible donors.
Frysz, a bubbly 21 year old Medaille college student, also came to trade stories, share experiences and hear familiar concerns from others in need.
While she is functioning with no kidneys at the moment, and attending dialysis in between working part time for an animal daycare and attending veterinary science classes at Medaille, she remains optimistic that her biography on Kidney Connection will help her chances. She noted that some of her Medaille professors have even agreed to help organize a donor drive for her.
Although she is a young woman, Frysz is wise beyond her years in medical terminology and experience with medical procedures. She stated the best way for people to get started in donating an organ is to just do it, "The only way you're going to know if you can donate is to get in there and get your blood tested!"
"It's an initial compatibility test to see if your blood type matches a recipient's and if you're a match, you're set up with a transplant team of doctors who then do a 'work-up,' or a series of testing and procedures, leading up to the day of the procedure."
Frysz herself has had her share of work-ups, most notably at Johns Hopkins University Medical Clinic, and has been in need of kidney transplantation since age 11 months. She was nine years old when she had her first kidney transplanted; however her body rejected the organ due to her Hemolytic Uremic Syndrome diagnosis. Frysz has waited 10 years to become an eligible recipient and needs a live donor to further her chances of her body being able to sustain her active lifestyle.
Morton stated his wish is ultimately for there to be a "waiting list of donors, and not a waiting list of recipients."
Vicky Parisio, of Forestville, who is also waiting on a donor, shared "Each of us has two kidneys, and we don't have two of any other organs except for our lungs. I believe we have two for a reason God gave us two good kidneys, one to use and one to share."
She noted that not only donors, but everyone, should pay close attention to their kidney functions, as well as their diet and overall health.
"You've got to be in control of your own healthcare, everyone should be aware of what their kidney function is, otherwise you could be in a situation that can't be reversed. Watch for the amounts of fluid you drink, salting your food, becoming tired or thirsty easily, or being prone to Diabetes, those are all things that could lead to kidney disease."
She and Ostrom noted that anyone seriously wishing to donate or receive should log onto the Kidney Connection website and register. "A physician will let you know if you are healthy enough to donate," stated Ostrom.
Ethel Kennon, of Niagara Falls, takes her biography on the website a step further in finding a donor. She personally asks everyone she comes in contact with if they know their blood type and if they will donate a kidney to her. Parisio, stated while she hasn't done what Kennon has to seek a donor; she does look around the crowded restaurant and wonder who might be eligible to give her a kidney.
"You only need one to live a healthy life, and donating a kidney is giving the gift of life," concluded Ostrom.
For more information about organ and kidney donation, visit the official websites for the National Kidney Foundation, Donate Life and Kidney Connection.