Wednesday, December 15, 2004

Families reflect on ultimate gift

An organ donation is a bequest that keeps giving


By DANA DUGAN
Express Staff Writer

Jan Johnson of Ketchum holds a photo of her late son, Kash, whose body was donated for organ transplants following his death in an 2003 auto accident. Express photo by Dana DuGan

"Since I've had it done now, I realize it was the easiest thing. In my whole being I feel totally complete, even though I am missing this organ."

—Linda Gordon, Wood River Valley resident


When Jean Swartling, of Sun Valley, took on a hiking trip to Italy in 1996 she went without realizing she was already suffering from Primary Pulmonary Hypertension, a disease which constricts the blood vessels going to the lungs thus depriving them of oxygen. In 2000 she received the first of the two cadaveric lungs. Unfortunately, with her defenses already low, she became sick shortly afterwards and required a second transplant, which she received two years later. Without a transplant, she was given approximately two to five years to live. She was 61 at the time.

"One body can save eight or nine different people," she said. The skin, the eyes, the bone marrow, "it's incredible what they can salvage."

It's been a long time since people thought it bizarrely futuristic to replace body organs or give them away. Lives are saved regularly thanks to these enlightened attitudes. In the United States, 87,000 people are awaiting organ donations, and according to a Dec. 1, 2004 Wall Street Journal story, an average of 17 people on that list dies each day.

One body can save many

Many people receive live organs from donors nowadays, especially kidneys, which are one of the most needed of body parts. But organs are also received from cadaveric donation.

Anyone can be a cadaveric donor by filling out a Donor Document of Gift form at Motor Vehicle Department. These forms, unlike the old method of checking off the organ donor box, stipulate what organs can be donated and whether these can be also used for research, education or therapy. But counselors, doctors and those who have been there just as forcefully recommend talking to one's family so they know exactly what you want.

Kash Stanley Johnson's family went through this agonizing decision Aug. 5, 2003. Johnson, 43, was an airplane pilot and lived in Sandy, Utah. His parents Lynn and Janice Johnson live in Ketchum.

After the auto accident that took his life, his wife Michelle, agreed to have his whole body harvested, his mother said. They all knew what he would have wanted, she added.

In the car with him were two of his five children. His son Jett, 4, was critically injured and his daughter Ashley's arm was crushed, Johnson recalled. Ashley had several operations and eventually her father's bone, which had been banked for six months, was used as a graft.

His arteries were used immediately after the accident. "We have reason to believe one cornea was donated. The other was injured so that was donated for research. Probably his kidneys went too. It gives us comfort," Johnson said with difficulty. "We thought it was a really good idea."

Other portions of Kash Johnson's body were donated: bone marrow, blood vessels, connective tissue and bones, intestines and skin. In April of 2004, a Family Recognition Ceremony was held in Salt Lake City. The ceremony was dedicated to organ, eye and tissue donors and their families. The Johnsons all attended the ceremony and Kash's story was one of those shared.

"People spoke, recipients and relatives of those who donated like us. There are glass panels around with the names of donors etched onto them. It's very innovative and modern," Johnson said. "We take flowers there. The cemetery doesn't mean a lot to me.

"It's so important to make sure your family knows what you want. It should be a conversation."

Availability remains a problem

Last year, Idaho eliminated provisions requiring families to give their permission, even if the donor has already agreed to the process on his or her driver's license. This shortens the time between death and transplant, which can be detrimental to both the survival of organs like hearts and lungs, as well as to prospective recipients.

Currently there are 129 people waiting for a kidney in southern Idaho and Utah. Two of these people are Wood River Valley residents Rachel Poe and John Stansberry, a former Hemingway Elementary teacher who has a degenerative kidney disease.

Poe already had one transplant in 1998, which was donated by her child's grandmother. After several years, her body rejected it because she was unable to keep anything in her stomach. She now has a pacemaker in her stomach so that she can keep the medication down and is currently on dialysis.

"I just met with the transplant team from the Swedish Medical Center in Seattle, because there's a possible donor from Phoenix. I could have it six months or less," Poe said.

She goes three times a week to Twin Falls for the dialysis, but isn't particularly happy about it. "I know a man who was going to donate a machine. There are ex-dialysis nurses who can do it. St. Luke's (Wood River Center) doesn't seem to want to do anything unless it's orthopedic or having a baby. We only need one room for a clinic."

However, St. Luke's Wood River Center Director of Community Relations Tanya Keim stated that "We don't have a Nephrologist (a specialist in renal kidney dialysis) on staff. It's a specialty training. In a nutshell, we are so fortunate to have a community willing to donate equipment if needed. We just don't have the capability of supporting the program due to staffing and volumes."

This is a cause that has come up before. Lisa Tanner received a kidney from fellow Hailey resident Vicki Smith in 2001. "We tried hard to get a dialysis machine for St. Luke's up here so people wouldn't have to make the drive to Twin Falls," Tanner said in June. "I know so well what these people are going through. You just get overwhelmed." Tanner died a month later in July 2004.

'I couldn't not do it'

Not all transplants work but there are many success stories. For instance, Page Jenner, 63, of Ketchum also donated a kidney in 2001 to a friend in Kentucky. His motivation was connected to the death six years earlier of his friend Bob Allison, whose son Greg Allison was killed a few years earlier. His entire body was donated at that time.

"He was my best friend and business partner. When he died it threw me for a loop. If you don't have kidneys, dialysis just slows down the process. When I heard about my friend, I just couldn't not do anything. Two or three other friends were tested but I was the best candidate. My wife and I went to University of Kentucky, which is quite a large transplant center. The guy who worked on me only takes out kidneys and the guy who put it in only puts them in. They give you an amazingly thorough testing to make sure everything is fine and there are no diseases that you don't know about."

The operation took four hours longer than normal, because Jenner's left kidney, the one usually removed, had an extra artery attached.

"You feel pretty yucky when you wake up, otherwise it's amazingly painless," Jenner recalled. "The most I ever took was Tylenol. The doctor recommends that you not drink tons of alcohol, and not overindulge in meat. My friend is fine. He was very sick, so it took awhile for him to regain his strength."

It was a month before the donated kidney began functioning in it's recipient. "It hadn't been rejected," Jenner said. "When he called to tell me, we just started crying. He's a good guy and it's a nice relationship when you do this. It's also quite a private personal thing.

"John Stansberry needs a kidney so badly," Jenner added. "He's had a hard time. They've had a series of medical blunders. I hope that someone will be a reasonable donor for him medically. He's a great guy."

Family members step up

Another valley resident who became a donor on Sept 22, 2004, is a Linda Gordon. The recipient is her sister, who lives in San Antonio. Her disease, Focal Segmental Glomerulscelrosis, was caused by a strep infection that she had as a child. Both kidneys were affected.

"She's 57 years," Gordon said. "Scarred glomeruli (the blood vessels that go to the kidney and surround it) can never be repaired. But I know I bought her at least 10 to 15 years because it took at least that long for the disease to begin with. There's too much protein in the urine. I've learned so much. I talked to (playwright) Neil Simon's wife. He received a kidney from his publicist. He has polycistic kidneys."

Gordon's sister is doing incredibly well, she said. "For a couple weeks they were fine tuning the medications. And she had to go back to hospital in San Antonio, (the Texas Transplant Center). I'm very grateful that she's doing so well."

Donors rarely spend more than two or three nights in the hospital and most insurance companies of the recipient pick up the tab.

"I'm feeling great," Gordon said. "I haven't ridden my horses but they're south for the winter anyway, but I am playing tennis. Everything is perfect. (Ketchum urologist) Dr. Ambrose McLaughlin is taking good care of me."

Many people are, of course, worried that if they give up one kidney someday they'll need it or their kids will need it. Gordon said that wasn't really an issue, mainly because it was a family member who needed it.

"I had some fear but it was so important to save her life. I did tell everybody in the world I wouldn't back out. Since I've had it done now I realize it was the easiest thing. In my whole being I feel totally complete, even though I am missing this organ. It's a spiritual thing."

States offer inducements

So, what are the reasons you would give away a kidney? Altruism, certainly. Selflessness, generosity, familial obligation?

How about a tax break: would that induce you to part with an organ? Because of a shortage of organs, transplant lists are long. Now, however, as an inducement several states, though not Idaho, have adopted a tax break for donors. For instance, state income tax deductions may be as much as $10,000 and applies to donations of a liver, pancreas, kidney, intestine, lung or bone marrow from living donors only. Living and travel expenses related to the donation may also be deducted.

Contrary to popular belief, there is no age limit on who can donate. Though, whether individuals can donate organs and tissue depends on their physical condition. Also, individuals under the age of 18 must obtain the consent of an adult who is legally responsible for them.

"The bottom line is you get more back than you give," said Jenner who was 60 at the time he donated his kidney. "I think you feel that way for the rest of your life. None of us are the same afterwards,"

An organ is indeed the gift that keeps on giving.

To get on a donor list contact yesidaho.org or the Intermountain Donor Services at idslife.org.




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