Transplant patients must play the waiting game

Monday, Sep 03, 2007 - 09:55:17 pm EDT

Transplant patients must play the waiting game

By Nancy Kennedy

Three nights a week, Tom Christensen packs his pillow and a blanket, grabs a bottle of water and his earplugs, kisses his wife, Dotti, good-bye and heads to the Inverness Dialysis Center.

From 8 p.m. to about 4:30 a.m., he watches TV or sleeps when he can in a wide recliner chair in a room with about 16 other people, hooked up to a machine that filters the toxins from his failing kidneys.

He’ll do this for as many months or years as it takes, until a donor kidney can be found. He’s 48.

“We’ve always known we were going to come to this point,” said Dotti Christensen. “We tried to avoid (dialysis) for as long as we could. But when the doctor said it was time, it was almost a relief, because I knew we weren’t going to have any more hospital episodes.

“Even if it was once a year, it was huge every time we went through that,” she said. “I’d worry that maybe this time he was too sick to even go on dialysis, that not even that would help him.”

Christensen has polycystic kidney disease, a hereditary condition passed down from his mother. He was tested shortly after his mother was diagnosed. His two sisters do not have it. Because the condition doesn’t skip generations, if his two children test negative — they can’t be tested until they’re 21 or fully grown — then the disease will cease in the Christensen family.

Eight years ago, because the kidney disease elevated his cholesterol and caused heart disease, Christiansen had triple bypass surgery.

Both he and his wife have the same blood type, O positive, and Mrs. Christensen can donate one of her kidneys to her husband, but they have decided that if one of their children have the disease, she would wait and donate to one of them.

As of Aug. 17, 72,942 people nationwide were waiting for a donor kidney. In Florida, 2,742 are on the waiting list for a life-saving kidney transplant.

According to the United Network for Organ Sharing (UNOS), other organs needed include:

Heart — 2,640 nationally, 76 statewide

Lung — 2,402 nationally, 139 statewide

Liver — 16,717 nationally, 434 statewide

Pancreas — 1,645 nationally, 10 statewide

Heart and lung — 120 nationally, 2 statewide

Intestines — 207 nationally, 10 statewide

In Florida, about the same number of men as women are waiting for a kidney, liver or intestines. More women than men need a lung; more men than women need a heart.

The waiting list for donor kidneys is longer than for those of other organs because many who are waiting for other organs — hearts and lungs, especially — die before they can receive a transplant, Mrs. Christiansen said.

People who are waiting for kidneys can be on dialysis while they wait. Also, kidneys can be donated by someone who is living, as opposed to other organs that can only come from cadavers.

To be placed on the national organ donor list, a person first needs to contact a transplant hospital. There are more than 200 to choose from. Christiansen chose Translife at the Florida Hospital in Orlando.

The hospital’s transplant team evaluates the person (based on medical history, current condition of health and other factors) to determine if he or she is a good candidate for a transplant. If so, the hospital’s transplant team will add the person to the UNOS national waiting list.

Organ matching criteria generally include: blood type and size of the organ(s) needed, time spent awaiting a transplant, distance between donor and recipient, the medical urgency of the recipient, the degree of immune-system match between donor and recipient and whether the recipient is a child or an adult.

At 48, Christiansen is fortunate to be able to be on dialysis at night, which he started in January. This allows him to be as normal as he can be while he waits. During the week he works for Sweetbay supermarket in Inverness as a deli and bakery merchandiser.

Still, life is anything but normal for Christiansen and his family.

“Life pretty much revolves around dialysis,” he said.

He can take a vacation, as long as he plans a trip with a nearby dialysis center. Trips to deserted islands or that Alaskan cruise that he’s wanted to go on are out of the question, at least for now.

The other restriction revolves around food. He has to be careful of foods high in potassium and phosphorus. He has charts and lists of things he can and cannot eat and tends to eat the same things every day: bagel and juice for breakfast, a turkey on white sandwich for lunch. Dinner has a bit more variety, but not much.

“I miss pizza!” he said. Tomatoes and cheese are no-nos.

Best-case scenario: If he gets a transplant, the first thing Christiansen plans to do is eat pizza. Then he wants to go on a cruise to Alaska.

“This definitely gives you a whole new perspective on life,” he said. “I just take each day as it gets here. My kidneys are still functioning; they haven’t shut down completely, and at least we have dialysis to keep us going and we’re grateful for that — and I still feel good.”

For more information about organ donation, log on to the U.S. Department of Health and Human Services Web site for Organ Donation at www.organdonor.gov.

http://www.chronicleonline.com/articles/2007/09/04/news/news20.txt