Life-Changing Conversations On Organ Donation

No one looks forward to having "the talk," whether the uncomfortable topic is plans for older parents, wishes about end-of-life care or even one that can save lives — organ donation.

"And nobody likes to have that discussion; it's an awful discussion to have," said Tina Ray of Terryville, who is thankful she had brought the subject up with her son Nick Smith just before his 21st birthday a decade ago when he bought a motorcycle. "In my case, it was more of a joking kind of discussion with my oldest son, but nonetheless we still had it."

The talk could not have been more timely. Three days later, Smith was in a motor vehicle accident and was declared brain-dead at Hartford Hospital.

Because Ray knew her son's wishes, she was able to authorize the donation of his heart, one kidney and his liver, and that helped a bit with the pain of her loss. "These people would have not survived if they had not had their transplants," she says.

The year that Ray donated her son's organs to save others, 2004, was the year that live donations peaked nationally. According to United Network for Organ Sharing (UNOS) records, live donors began to increase rapidly in 1990 and continued to increase up to 2004.

However, in the past 10 years, the numbers have plateaued at the same time that need has grown. Medical professionals are concerned that some people might fear that doctors or first responders will not do all they can once they are aware that the patient is a donor.

Dr. Patricia Sheiner, director of transplant services at Hartford Hospital, said that's just not true. "I'd love to take away that fear," she says. "People are not going to be identified as donors until everything possible is done to save that person."

Hartford Hospital, the organ transplant center that harvested Nick Smith's organs, sees about 50 kidney transplants, 15 liver transplants and 15 heart transplants each year.

"The volume is stable," says Sheiner. "We're slowly increasing, but we're increasing our wait list as well."

As the gap widens between those willing to donate and those in need, many groups are trying to raise awareness of the problem.

"Part of it may be that we have an older population who might not be good candidates," Sheiner said. "There's diabetes and hypertension, and other issues that make people not good donors. I can't say exactly why [live donations have decreased]."

With more than 120,000 patients nationwide awaiting transplants and, on average, just over 14,000 donations, the need greatly exceeds the available organs. According to Donate Life New England, about 5,000 of the people in need of transplants live in the New England region. "Every 12 minutes another name is added to the national waiting list, and each day 18 people die while they wait for their transplant," according to

Through Life Choice Donor Services in Windsor, Ray and her husband, Don Ray, are still in contact with those who benefited from the organ donations. They even set aside one night a year for dinner with Nick's heart recipient and his family. While the donations helped ease the pain, she remained fearful every time her younger son, Michael, left the house.

"I wanted to wrap him in bubble wrap, stick him in a closet, and wait until he was 35 years old to release him," she says with a chuckle. Still, eventually she loosened the reins. Michael married and settled into life with his wife, young daughter and stepdaughter.

Then, in 2010, just six short years after Nick's accident, tragedy struck the family again. Michael, then just 23, was hospitalized for a medication-induced brain injury. He died at St. Francis Hospital in Hartford.

"I didn't know how I was going to survive the first five minutes, let alone five years," she says. "It still seems so improbable. It feels like it's not my life."

Once again, she sought the temporary distraction of finding recipients for her son's organs eventually donating his heart, liver, kidneys and pancreas.

Though the Rays don't see the recipients as extended family, they understand the impact they made by facilitating the donation process. "We just helped them to continue their family," she says. "I think that [Nick and Michael's] purpose was to be able to provide a heart or a kidney, and I was just the person who was able to make that happen."

Organ transplants are often crucial to those with chronic illnesses including diabetes, high blood pressure, heart disease and kidney disease. "Transplantation is an important part of really being able to take care of patients from beginning to end," Sheiner says. "Being able to offer organ transplants is one of the standards of care [at Hartford Hospital]."

The growing list of those in need and the inconsistent availability of donors means that while some lives are saved, even more are lost. "We see the other side," Sheiner said. "We see the patients who die, who are taken off the list because they've waited too long and are too sick to get a transplant."

Unbeknownst to Ray, her family would soon face the bleak side of organ donation.

In fall of 2011, just before the one-year anniversary of Michael's death, Ray's husband, Don, received an ultimatum from his doctor after nearly 25 years of treatment for kidney disease: receive a kidney transplant from a live donor before year's end or face dialysis. Not one of Don's siblings were suitable donors. Miraculously, Tina was and surgery was scheduled for Dec. 15th.

"I remember waking up in recovery, and my throat was really sore from being under, but my body felt so good," Don says. "I didn't realize how bad I was. I was getting up every morning and going to work."

Don Ray's battle with kidney disease is one shared by more than 20 million U.S. adults, thousands of whom need of a transplant. "The wait for kidneys is four, five or six years, depending on your blood type," Sheiner estimated. More than 80 percent of those waiting on the national transplant recipient list are in need of a kidney. The majority of people are born with two kidneys but need only one to survive.

In addition to kidney disease, untreated chronic illnesses such as high blood pressure and diabetes can reach a level of severity that requires the patient to seek a kidney transplant. Given that these are hereditary, finding a family member to donate can be difficult. If doctors think a potential donor's health will decline as a result of donating an organ, the patient will have to keep searching.

In fact, "you have to pass physical and mental exams to make sure that you have the support system to handle that type of thing," says Kari Mull, director of Donate Life Connecticut. "You have to be in pretty excellent physical health." Donate Life America is a national nonprofit that, along with its statewide branches, urges the public to register as organ, eye and tissue donors.

Donate Life America encourages all branches to work toward getting 50 percent of the eligible population registered. Right now, Connecticut has only 42 percent of its population on the donor registry. Mull would like to see more of the state registering for donor status online or through the DMV, which might require a difficult discussion like the one Ray had with her son Nick. "To have more people having the conversation would be helpful," Mull says.

Mull points out that this is just the first of three major steps toward improving the deficit between patients in need and successful donations. "Get registered; take preventative measures to avoid needing a transplant; [and] increase awareness about becoming a live donor." These are the goals she wants the public to focus on to increase donations.

Sheiner agrees. "It's really about consent. If only half of the people who are available donors are consenting, that shuts down our pool by 50 percent." Once a person is recognized as a deceased donor, extensive organ examinations identify even fewer viable donors. "Only a small percentage of people who die are organ donors," Sheiner says. Either way, the family is made aware of which organs, if any, the loved one was able to donate.

Throughout Ray's unbearable losses, she and her husband's experiences with organ donation have given them something positive to hold on to through the pain. "I think we both have a newer appreciation of life," Don Ray says. "We just want to enjoy every day, have fun every day."

Tina Ray also points out that while it may not be so for every family, organ donation helped her cope with her grief. "Each individual story is its own," she says. "There's no right way, there's no wrong way. I only know how I felt and knowing that I was able to help somebody else have a better quality of life was helpful for me."

A single tough conversation changed at least six lives, possibly making the difference between life and death.

"It's so inspiring to see how much you have helped not just the person but a whole family," Sheiner says. "There's nothing you can do to save a life more than organ donation. Organ donation is life-saving, life-changing for people."

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