Organ transplants offer hope to terminally ill

James Shum has spent the last three and a half years waiting for a phone call that would bring him news of a suitable kidney transplant, and a new grasp on life.

Shum was diagnosed with kidney failure in 2004 and ever since has been kept alive with a dialysis process that cleans his blood every other night while he sleeps, and brings with it the side effects of severe cramping through his body.

"I get it sometimes in the feet, toes and calves, and it is often extremely painful," he said. His diagnosis and treatment also has brought him depression, even suicidal feelings, at times.

While support from his friends and family has pushed the worst of his depression aside, he reports that his wait for a kidney is far from over: it could be eight years.

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According to Jennifer Martin of the National Kidney Foundation, the wait for a kidney depends upon a variety of factors – a person's blood type, general health and the area of the country they come from. Some wait a few weeks, she said. Others can wait up to 10 years.

Since 2003, April has been designated as National Donate Life Month. Currently, about 97,000 people in the United States are waiting for a suitable organ transplant. Of those, about 75,000 people are waiting for a kidney transplant.

On March 28, 2007, President Bush said in a proclamation, "Every human life holds inherent dignity and matchless value… the decision to donate the gift of life demonstrates the compassionate spirit of our nation."

But the need for organs and organ donors is extreme – each day 17 people die in the United States waiting for an organ transplant. And the demand goes far beyond the need for kidneys.

Sarah Schonhoff was born in 2005 with Alpha-1 Antitrypsin Deficiency, a rare genetic disorder that attacks the lungs or liver. In Sarah's case, her liver fell victim to the disease.

When Sarah was 11 months old, she was placed on the transplant waiting list. Doctors attempted to match Sarah with a split adult liver. Because the liver can regenerate, it is possible to remove a section of an adult liver and transplant it into an infant.

But splitting an adult liver is a "very exact science," said Kelila Schonhoff, Sarah's mother. Sarah's blood type was also O positive, the most common blood type, which also reduced her chances of finding a match.

It is most difficult to find an organ for a person with O blood type because people with type O blood can give an organ to someone with any blood type, but can only accept organs from others with type O blood. The demand for organs with type O blood is high, but the "giving pool" is limited. In spite of numerous attempts by doctors to find a suitable liver for Sarah, time was not on their side.

At one point, Kelila said that she and her husband were pulled from a movie theater and told to return to the hospital immediately.

"It was the worst emotional roller coaster in the world!" she said. First there was the uncontrollable excitement that a suitable liver may have been found, and then, they had to wait for news.

"Then came the most painful low," she said, "the heartbreak of learning that it wasn't going to happen."

Two days before Sarah's short life ended, she received a possible offer of a liver transplant.

"I tried not to get too optimistic, but I couldn't help but cry," Kelila said. After suffering through a sleepless night, she called the hospital early the next morning, only to learn that the possibility had fallen through. "I felt like I had been crushed by a cement elephant."

At this point, Sarah's vital signs quickly began to go downhill, and the doctors informed her parents that she was no longer capable of receiving a transplant.

"We decided that at this point we were only keeping her alive for selfish reasons, for us," Kelila said. They made the difficult decision to remove Sarah from the life support she was on. "It wasn't long until she slipped away."

Since Sarah's death, her parents have become advocates of organ donation, working with San Diego Life Sharing and the Donate Life Rose Parade. While organ donation did not arrive in time for Sarah, it has provided many others with the second chance they only dreamed of.

According to Amanda Claggett, with the United Network for Organ Sharing, 421,851 organ donations have been performed since the year 1988.

The Organ Procurement and Transplantation Network reported that experimentation with organ transplants first began in the 18th century. Only in the last 20 years, however, have organ transplants and donation become a viable and life-saving option.

Medical breakthroughs, such as tissue typing and immunosuppressant drugs, have paved the way for a greater number of successful organ transplants and a longer survival rate for those who do receive transplants. The discovery of immunosuppressant drugs in the mid-1970s allows for an organ recipient to accept their new organ without the body's immune system attacking and destroying the new organ.

Steve Brooks

Steve Brooks has reaped the benefits of the medical breakthroughs of the 20th century. In 2001, Brooks suffered a major heart attack which extensively damaged two-thirds of his heart. For the next six years, Brooks was in and out of the hospital. Finally, his doctor told him that unless something drastic was done, he could expect to live no more than another two years.

But Brooks had two young children still at home, and his oldest daughter was engaged to be married. He was not ready to give up on life, so he chose to pursue a heart transplant. In April of 2007, Brooks was put on the heart transplant waiting list, and doctors told him that he could reasonably expect an eight month to two year wait for his transplant.

"But I'm a firm believer in the providence of God," Brooks said.

Brooks had been on the waiting list for a heart transplant all of 45 days when he got a phone call from his transplant coordinator letting him know that a possibility for a heart transplant was "in the works." At 11 p.m. on May 26, Brooks was wheeled into the operating room. The next thing he remembers is looking up into his wife's face and her words, "you've got a new heart and its beating perfectly."

Overwhelmed with gratitude and by the suddenness of the transplant, Brooks wrote in his online journal, "I can barely sit and think of the goodness of God, and the loss of this [person] whose heart is now beating in me, without breaking down in tears of praise to God."

Now 10 months after his successful heart transplant, Brooks says that he has made contact with the donor's family through a letter. While United States privacy law ensures the confidentiality of both parties involved in the organ donation, Brooks does know that his new heart came from a 23 year old male who was involved in researching a cure for both Autism and Alzheimer's.

"I always have to struggle with the idea that someone had to lose their life for me to continue mine," Brooks said, though he realizes that his second chance at life came because someone else made a conscious decision to give the gift of life.

Brooks later found out that his organ donor had specifically requested that his organs be donated in case of his death. It was that request which caused his family to go ahead with the organ donation after his death.

Organ transplant recipients and advocates are united on this front: people need to register as organ donors, and not only that, organ donors need to make sure their families know they want to donate.

Tracey Arsenaut donated her mother's liver and kidneys in 2007, after her mother passed away from brain aneurysm. Arsenaut's mother had wanted to be an organ donor since 1979, well before organ donations were in common use.

"You have to be like my mother and make sure it's drilled into people's heads. 'This is what I want!'" Arsenaut said.

Arsenaut's encouragement for people across the United States? Sign up as organ donors, and then discuss it with the people closest to you.

"People are dying," she said, "and we've got the 'know how' that people don't have to die."

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Kaitlyn Czajkowski is a journalism student at Patrick Henry College.