Chanhassen boy waits for kidney

By Lauren Olson

“Every Tuesday he takes the bus to school. I pick him up at 12 p.m. and we get to the University by about 1:15. Then we go down to dialysis. Every day he gets measured, gets his temperature taken and they take his blood pressure. After all that, he gets changed and they ‘hook him up’ as we like to call it. They hook him up to the machine. It’s a four-hour run.”– Melissa Ryherd 

Every week, three times a week, 8-year-old Isaac Ryherd travels from Chanhassen to the University of Minnesota Medical Center to receive dialysis. Isaac was born with dysfunctional kidneys and has had to be on this life-saving treatment for two years.

Isaac is one of 74,000 Americans waiting for a donor, living or deceased, who is willing to give a kidney to a person in need. Although organ transplants from both deceased and living donors have a high success rate, most people do not donate. This has created a demand for organs that simply cannot be met.

Last year, only about 25 percent of kidney patients received the organs they needed, according to a report released by Life Source, a non-profit organization that helps match people with prospective donors. Many patients die while they are on the organ waiting list.

Most organ donations come from deceased donors. Of the 14,393 donors in 2007, 8,087 were deceased, according to Life Source. Deceased donors often donate more than just one organ, and, according to Life Source, one deceased donor can help save and improve the lives of more than 60 people through tissue and organ donation. Last year, 28,352 organs were transplanted even though there were only 14,393 donors.

“You don’t need your body after you’re gone,” said Melissa Ryherd, Isaac’s mother. “Someone else might.”

 “Isaac got a deceased kidney in August of 2001. That one worked until March of ’06 but then his body rejected it. We sort of dropped the ball. We didn’t keep up with his check-ups, and they didn’t catch the problem early enough. They couldn’t say whether or not it would have made a difference. I think it was just so continuous that we never really absorbed the fact that we had a terminally ill child. You just assume that everything is going to be fine.” 

Although donations from deceased people are more common, live donations are usually more successful.

“Recipients with a kidney from a living donor have a 95 percent success rate compared to an 85-90 percent success rate when the kidney comes from a deceased donor,” according to the London Health and Sciences Centre. One issue that keeps many potential living donors from donating are the possible health risks associated with transplantation.

Since organ donation is a relatively new procedure, studies on the long-term effects of kidney donation are limited. However, most have shown few, or no long- term health risks associated with living kidney donation.

“There may be some long-term effects, but it’s hard to measure,” said Dr. Michael Mauer, a pediatric nephrologist who works with Isaac. “But if there were any major concerns, we would have caught it by now.”

Some of the long-term health risks associated with living donation are a slightly higher rate of high blood pressure as compared to the general population, and a slightly higher rate of proteinuria, which is an abnormal amount of protein in the blood. The life expectancies of donors varied, however, and in some cases the numbers showed a longer life expectancy for donors than for the general population. This may be due to the scrupulous screening of donors, who must be in very good health to donate.

“You don’t need both of your kidneys,” said Ryherd, whose own kidney donation to her son in 2001 didn’t take due to complications after surgery. Isaac went into cardiac arrest, and suffered severe brain damage. Since then, Isaac has had to have an individual education plan that spells out his learning, dietary, and physical needs and activities in the classroom. Isaac attends Bluff Creek Elementary School in Chanhassen.

“Isaac is huge into costumes. He loves dressing up like Spider Man, the Hulk, Darth Vader… He feels better being a superhero. When he’s out of costume he calls himself plain old Isaac. But in costume, he’s a superhero.”

One practice that is becoming more common in recent years is anonymous kidney donation, when a living donor volunteers an organ to a person that he/she doesn’t know. This practice is still fairly uncommon since many medical facilities don’t allow donors to give their organs to people who aren’t close friends or relatives. However, this practice is permitted at the University of Minnesota Medical Center.

“This Medical Center pioneered the idea,” said Mauer. “It has a lot of safeguards, and so far it has been quite successful. I’ve met some such people, and they’re really amazing.”

All anonymous donors are screened for both physical and mental health problems, said Mauer.

Even with anonymous donation as an added option, demand for organs remains high on both a local and a national level. This shortage has brought about the consideration of a controversial question – whether or not a donor should be allowed to receive compensation.

The buying and selling of organs was outlawed in the United States in 1968. According to The Transplantation Society, an organization that sets international ethical and medical standards for organ and tissue transplantation, donors should give their organs willingly, and “without commercial consideration or financial profit.” The society, along with many other individuals and organizations, is concerned that the commercialization of organ and tissue donation might lead to the exploitation of certain segments of the population.

“It’s open for a lot of discussion, and there is a lot of opportunity for exploitation,” said Mauer. “But we pay other people to risk their lives for us as police officers, and in times of war. Here is just another case.”

In the meantime, as patients await their transplants, many are kept alive through dialysis. During dialysis, patients are hooked up to a machine that performs the duties normally performed by the kidney, such as cleaning the blood. People can be kept alive for years with the help of dialysis. However, dialysis is both time consuming and exhausting.

 “He’ll color, draw, watch TV, and play Playstation while he’s on it. It’s hard for him to do any homework though. He rarely sleeps on dialysis. If he falls asleep, then I know something is wrong. Monday’s are probably the worst day for him. He doesn’t get dialysis on Sunday or Monday, and between his fluid retention and his blood not being clean, he gets crabby. It’s like he can’t figure out what’s missing.” 

Every day, 17 people die while waiting for an organ donation, according to statistics released by Life Source. And every 13 minutes, a new person is added to the national organ waiting list.

To learn more about Isaac, visit his caring bridge Web page at www.caringbridge.org/mn/isaac. For more information about becoming a donor, call Living Transplant Coordinator Kathy Garvey at (612)625-2186.

 Lauren Olson is an intern at the Chanhassen Villager. She can be reached at intern@swpub.com             

Donor facts

Number of patients on the national list waiting for a kidney as of Feb. 2008 – 74,638

Number of patients that received a kidney transplant last year – 16,622

Number of living organ donors in 2007 – 6,306

Number of deceased organ donors in 2007 – 8,087

Total number of organs transplanted in 2007  – 28,352

Number of patients on the national list waiting for a kidney as of Feb. 2008 – 74,638

Source: Life Source organization 

Information

To learn more about Isaac, visit his caring bridge Web page at www.caringbridge.org/mn/isaac. For more information about becoming a donor, call Living Transplant Coordinator Kathy Garvey at (612) 625-2186. For more information about organ donation, visit www.life-source.org/.