Organ donors answer questions including, "Why?"

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Monday, February 4, 2008

Organ donors answer questions including, "Why?"

By Marcia Schlegelmilch
Staff Writer

YORK -- If you ask Todd Faller or Don Perry about organ donorship their answers will come from two places. First from experience. Second from the heart.

Since 1997 Todd has been very aware of a disease called PKD (polycystic kidney disease). 1997 was the year his kid brother Ron, 18 months his junior, was diagnosed with the disease.

The PKD Foundation for Research Web site states, "Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. ADPKD affects more people than Down Syndrome, cyctic fibrosis, muscular dystrophy and sickle cell anemia combined."

PKD causes fluid-filled cysts to grow on and in the kidney. Over time, as the cysts multiply, kidney function declines. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.

Todd's brother Ron lives in Lincoln where he is employed by the University of Nebraska as a civil engineer.

Being diagnosed with PKD was life-changing for Ron. It became necessary to re-think his diet. Protein was no longer an option. Fruits were eliminated.

Todd says his brother managed the best he could for a decade, "But as the disease continued to progress, it took his energy away." Until, in the beginning of 2007 when Ron's kidneys began to shut down. "The disease had taken its toll."

At that time Ron's options included being placed on a donor list (which doesn't take place until kidneys are functioning at a mere 1-2 percent), and dialysis.

"We knew we would be tested when we got to that point," Todd states. So Todd, his wife Carol, their daughter Cassey, along with several other friends and relatives made the choice to go through the testing process.

When selecting a match for kidney donation physicians look at six antigens. Matching even one leads to further testing. Ron says, "You don't have to match them all. Three of four can be a match with the immuno-suppressive drugs they have today. Even when you match all six rejection is still a concern. But matching six is a good as it can be."

Carol was tested first and matched one antigen. Todd on the other hand, was a match for all six ... plus, the brothers' blood types were compatible. At that point doctors quit looking. A donor had been found. Ron would not be forced to wait the average 2-3 years for a kidney.

Ron was blown away when he received a telephone call from his big brother, "He called me and said, 'I guess we are going through with this.' It was whoa! Things moved quickly after that."

After initial test results were verified, surgery was scheduled for Nov. 7, 2007.

Being an organ donor "is a personal decision. Personally I think its a good thing and I'd encourage others to think about it. I've had my driver's license marked as an organ donor four or five years. Because of what my brother was going through I became more aware of the donor system. I have no problem with it. If something happens to me I don't need my organs," Todd states.

Ron stayed one day longer in the hospital than Todd. Looking back on the surgery and recovery Todd says he probably should have stayed that extra day too.

"The odd thing about a kidney transplant is they don't take out the old kidneys. The old kidneys are still there ... they place the new one behind the pelvis," informs Todd.

"I still have two kidneys the size of footballs. They are hooked up and function a minimum of 1-3 percent, that's something," tells Ron.

Upon dismissal Todd was cautioned, "Be as careful as you can." He was told to stay hydrated, which is a real issue considering Todd is a landscaper. Advice included; don't fall on the ice. There were lifting restrictions, and for a while Todd was forced to refrain from playing in his 30 and over basketball league. He says at about four or five weeks out he was nearly 100 percent.

Todd's surgery was very different from his brother's. Todd's involved disconnecting all of his intestines and colon from the wall of the abdomen which, needless to say, was an unusual experience.

Three months have passed since the Faller brothers' surgery. Todd is pretty much back to normal. And Ron, well, he says, "I feel actually pretty good. I still have some minor discomfort from my incision. My energy is up and I'm not so tired. Really, the blood clot issue (which developed following surgery) is the only thing. My kidney function (which is checked twice a week) is very good. Overall I'm doing well."

"The people I really respect are those who donate and aren't related. You really have to respect that," Todd says modestly.

Today, the life of a donated kidney is expected to be 15 years. At only 43 years of age, Ron is facing the possibility of needing one or two more kidneys in his lifetime.

"It's a big sacrifice to be a donor. It's amazing people do that. It is significant when people do and agree to do it with no problem," Ron comments. "There are 76,000 people waiting for a kidney. I'm just thankful there were those out there willing to say 'we'll do that' (become donors) for me."

In 1999 Don and Joanie Perry faced some tough decisions. Joanie had been suffering from lupus for quite a few years. She and two other girls from her hometown of Gordon had contracted the disease.

"One of the girls died right away. Joanie lived much longer than the doctors ever thought she would," Don says.

Don and Joanie met early in their teaching careers. According to Don they were just a year or two out of college. Joanie knew she had lupus by then. That was back in the late 1970's.

By summer of 1999 Joanie had been on dialysis for several months and would probably need to continue. The lupus had attacked her kidneys. Her other blood work had stabilized and Don says they decided to check family members in hope a match would be found.

"Lupus is a strange disease. I met people whose blood systems had been attacked by lupus, or their heart, liver or lungs. With Joanie it was the kidneys. Lupus is an auto-immune disorder. Your body thinks it is being attacked and turns on itself," Don explains.

After no match was found among family members Don says, "We were sitting talking to the doctor about how we were running out of options. We decided to see if it was even feasible for me to be a donor. That whole summer I had tests and everything pointed towards it. They even checked me the morning of the surgery to make sure the results were right."

A kidney transplant would be risky for Joanie. Prior to her surgery only four lupus patients had undergone kidney transplants. Two had succeeded, so chances for success were 50-50.

In October of 1999 Don underwent surgery for the removal of one of his kidneys. "I had no qualms about undergoing the surgery. You only need one. I never really thought about it that much. My wife was in need and a match improved her chances of survival," he states.

Don and Joanie's surgeries took place at the University of Nebraska Medical Center in Omaha. One of Don's nurses was a former student at Heartland Community Schools where he teaches.

About a week after surgery Joanie developed an infection. Don recalls "going back and forth to Lincoln to see doctors. After a while the kidney died and Joanie was back in dialysis again."

The couple had tried the only option they had -- there were no regrets. Joanie lived until January of 2001 when she passed away from a blood infection.

"They tried everything they could," says Don.

"I get on my soap box at school and promote organ donorship. This week I read an article about ways they may be able to avoid using anti-rejection drugs by doing a bone marrow transplant. Those pills were terrible. I don't know how Joanie swallowed them. They were this big," Don says, holding his fingers up about an inch and a half apart. "I talk to my students about the bloodmobile. Giving blood is a donation. It helps get kids started.

"People ask me what changed in my body after I donated the kidney. Well, I go to the bathroom more than I used to. I drink lots of water, they tell you to do that. I have check-ups and blood work. Things have been going great guns for nine years now."

Neither Todd nor Don would change their decision. Both believe they did the right thing. Neither would consider another option. And though Ron and Joanie felt blessed to be given such a gift, Todd and Don feel equally blessed to have been able to give because for them donation is all about life.

About organ donation

# The U.S. Department of Health & Human Services organdonor.gov Web site reports; as of Jan. 29, 2008 the list of candidates awaiting organs numbered 98,078.

# A total of 23,706 transplants took place in the United States between January and October of 2007.

# Each organ and tissue donor saves or improves the lives of as many as 50 people.

# The number of donors in the period of January through October 2007 was 12,031.

# Every 16 minutes a name is added to the national organ transplant waiting list.

# No one is too old or too young to donate. The condition of the organs is more important than age.

# The average national waiting time for a heart is 230 days; lung 1,068 days; liver 796 days; kidney 1,121 days; pancreas 501 days.

# Types of donations include organs and tissue from living donors; donations made after brain death; donations following cardiac death and whole body donations. Source: organdonor.gov

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