Now's the time to discuss the gift of life
Source: Times Herald | By
Polycystic kidney disease runs in his family. His brother Ralph had a kidney transplant four or five years before he did. His mother had the disease, although she was asymptomatic until she was in her 80s. And in Levy's case, around 2002, regular blood screenings began to tell the tale of a disease that was progressing.
"By late 2003, it was really getting bad," says Levy, who is now in his early 60s. "Although not painful, the disease is very draining. I was very fatigued; my energy levels were low. But I think I did a good job of keeping the disease to myself."
The active attorney says that many of his colleagues were shocked when they learned that he had a kidney transplant.
"We did what we had to do to get through that time," his wife, Susan, says. "Some days were harder than others."
The two months on dialysis awaiting the green light for a transplant were the most difficult. "The experience for me was disturbing. The trouble mostly originated because of the fistula," he says.
A fistula is an unnatural connection between two parts of the body. In his case, an artery and vein were surgically joined to provide entry access for the dialysis needle. It takes time for the fistula to mature; however, in Levy's case, his need for dialysis came before the fistula was ready.
"The staff at the dialysis center in Newburgh was wonderful and did their best to make the procedure as comfortable as possible," he says. "Although dialysis was upsetting, I already knew that a good friend was willing to be a donor, and I realized how very lucky I was. I saw people who I knew would never be able to get off dialysis."
Levy's donor, Patti Avin, then of Long Island and now of Rhode Island, had been screened — as well as several other members of the community, who were ruled out.
"While on dialysis, I remained hopeful that it wouldn't be too long before she passed all the remaining tests," Levy says.
"There was so much testing," says Avin, who was 52 at the time. "I learned I was the healthiest person in the world."
'Magical' meeting
And if not for magic, the two might not have ever met.
Avin is very close to her sister, whose husband's hobby is magic. As is Levy's. The men became acquainted at magic shows and seminars. Then their wives met.
Because of the sister connection, eventually Avin and her husband met Levy and his wife. They exchanged Hanukkah cards and soon came to attend milestone celebrations such as bar mitzvahs.
"But we weren't once-a-month-get-together friends," Avin says. "One day, however, I was talking to my sister and she told me that George was symptomatic. She said he was hoping for a live kidney donor."
Avin had no idea Levy was battling any disease, let alone one that would require a transplant. She pursued the news further with her sister, learning that blood-type compatibility was required. George is A positive — just as Avin is.
The next day, Avin, then an account manager for Oxford Health Plan, went into work and nonchalantly picked the brains of the transplant team on staff. She was sent to several websites for more information.
"My dad passed away in May of 2003," says Avin. "I couldn't help thinking, if there was a heart available so he could live ..."
And this is how she presented to her family what she believed in her heart was the right thing to do. It was about giving an organ so another human being could live. Period.
"My son and daughter said 'Yeah,' but my husband thought I was crazy — but was 100 percent supportive," Avin says. "I was a little anxious the day of surgery, but I was more nervous for George."
She remembers lying next to one another on side-by-side gurneys in the operating room's waiting room. It was emotional.
"Our families had dinner the night before," she says. "George and Sue gave me a gold (charm) bracelet. I thought it had a letter 'C.' But it wasn't a 'C'; it was a gold kidney so that I should always have two kidneys."
"It was an overwhelming experience," says Susan Levy. "George was so moved that someone could care about him so much that she would give him back his life."
Recuperation, adjustment
Certainly, there was a period of recuperation and adjustment for each of them thereafter. "The transplant experience was more positive (than dialysis)," says Levy. His struggle, however, was with depression.
"There were guilt feelings I had," he says. "I was so thrilled that Patti could help ... yet the depth of her sacrifice. ..." He said he had difficulty processing the magnitude of that reality.
Avin's recuperation was more physical. The kidney was removed from the front, leaving her with an eight-inch scar that matches the scar from the removal of her appendix.
"I was told they turned me upside down and everything fell," she says. "I could feel my organs shifting. I was in the hospital for five days and ate yogurt for three weeks."
But fast-forward six years. Although Levy and Avin are forever changed by this experience, they have resumed living their lives to the fullest.
"I can't take NSAID drugs like Motrin or Advil. They can damage a kidney," she says. "But other than a couple of scars, there are no limits."
And she says she'd do it again in a heartbeat.
Levy recently spoke at an organ-donation event to help people understand the transplantation need — and what needs to be done.
"Just checking off the back of your driver's license might not be enough," he says. "You need to talk to your family about your wishes."
And holiday time — along with birthday celebrations and reunions — offers the perfect venue to accomplish this.
"Keep it light," he says. "Just let your family know that in the event of your untimely death, you would want to help save another life."
MAKE YOUR DECISION KNOWN
Now is the time to talk, the experts say.
When the family is gathered for the holidays. Before you're sick. Before a car crash. When you can still make light of harsh realities.
"And it's always easier for the families if they know what their loved ones want," says Lauren Quinn, manager of hospital and community services for the Center for Donation and Transplant, based in Albany, which covers 30 counties in New York, including Sullivan, Dutchess and part of Ulster. "Orange County is covered by the New York Organ Donor Network, based in New York City."
Nationwide, more than 100,000 people are awaiting organs; about 10 percent of those, or 10,000, reside in New York state. "On average, 17 people die each day waiting," says Quinn.
So what can you do?
Talk to your families. Make your wishes known. It's not maudlin; it's the right thing to do, says Quinn.
If there's any hesitancy at the time of a loved one's death, doctors will not push for organ donation. But there's only a small window of opportunity for acquiring a viable organ.
And there's an even smaller pool of possible donor candidates. "A person has to be declared brain dead," she says, explaining that a patient who dies of cardiac causes cannot be an organ donor.
"But that person can still donate valuable tissue - skin, bone, connective tissue, corneas," she says. "About 60 percent donate - which means that 40 percent do not."
Those numbers translate into about 27,000 organ transplants each year and a half-million tissue transplants, she says.
Resources, details
Quinn also suggests joining the state Donate Life Registry (www.donatelifecdt.com). For all those registered on this site (donor details are protected, she says) after July 2008, no one can legally overturn their decision to donate their organs at the time of death.
"If you registered before July of '08, you should re-enroll," she says, as those earlier registrants have not been grandfathered in and their registration is not afforded the same legal weight as now.
And don't let the belief that you might not be a good donor candidate stop you. "Every donor is carefully evaluated to determine whether it's safe to recover and transplant specific organs," she says.
The state Donate Life Registry can also be accessed through the Department of Health at www.health.state.ny.us/professionals/patients/donation/organ. There you can fill out the New York State Organ and Tissue Donor Registry Enrollment Form, which then needs to be printed, signed and sent via snail mail to the Donor Registry at the Department of Health. Questions can be sent to DonorReg@health.state.ny.us, or call 866-693-6667.
SOME DIE WAITING
Patti M. Avin needs to look no further than her own family to understand the reluctance of becoming an organ donor.
Before she donated her kidney to George Levy, her father died of coronary complications. Avin's mother adamantly refused to allow any of his tissues to be used for transplantation.
"'The way you come into the world is the way you go out,'" Avin says of her mother's beliefs.
Yet, when Avin explained to her mother the decision to donate a kidney in terms of her father - "If there was somebody with a heart for Dad, wouldn't you have wanted that?" - it was understood.
"There are educational, social and sometimes religious obstacles to organ donation," says Dr. David J. Conti, director of transplantation surgery at Albany Medical Center.
When Levy realized he needed a kidney transplant, he and his wife, Susan, researched regional medical centers and their various transplant programs, including waiting lists.
"Albany Medical Center offered the shortest wait time," he says. "But we then found out it was an excellent program."
Conti joined its staff in 1989, when the success rate was 80 percent - and "success" was defined as a recipient who was alive with a transplanted organ, in this case kidney, that was still working a year later.
"Today, the success rate is 93 percent," he says. "Not only are patients living longer, we're also transplanting patients who we wouldn't have in the past. Today, they're often much sicker, with diabetes, heart disease, high blood pressure - conditions that would have precluded them from a transplant 20 or 30 years ago."
However, with more and more people designated as candidates for surgery, the discrepancy between those awaiting a transplant and the number of available organs continues to grow.
"More than 100,000 people are awaiting a transplant," he says. But many won't get one.
"I can't overemphasize the need for people to realize how important it is to donate their organs," he says. "There are people who die waiting for liver, kidney or heart transplants. There just aren't enough organs."
If, in the case of a kidney transplant, the donor is living, the donor also needs to be assessed as well.
"You don't necessarily need a good match," says Conti. "They need to be blood-group compatible. The donor needs to be completely healthy with really good kidneys and not 'aged.'"
And "aged" is physiological, not chronological. For instance, a 30-year-old who has smoked three packs of cigarettes a day for 15 years might be more "aged" than a 65-year-old who has no disease and has followed a healthful regimen during her life.
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