Transplant Diagnosis Often Hard To Accept

By Michelle L. Start

Daily Commercial Staff Writer

FRUITLAND PARK -- Looking at Carolyn Samuel, it's hard to believe how sick she was or how close to death she came.

Today, the energetic Fruitland Park woman works as the supervisor of human resource services for Lake County Schools, but 12 years ago, when she was working as the principal of Roseborough Elementary School, she was diagnosed with kidney failure and told she would need a transplant. She was 46.

"That was so foreign to me. I had heard about organ transplants, but never had I believed I'd need one. When you hear you need one, it all seems so foreign, like something you can't face. I was in denial for three months," Samuel said. "But, the bottom line is you want to keep on living." She knew she had hypertension, something she believes she inherited from her father, but that didn't make the decision to have a transplant any easier.

Samuel visited TransLife, Central Florida's organ procurement agency, where she watched a video, asked loads of questions, underwent extensive exams and was eventually placed on the national organ transplant waiting list.

TransLife officials said there are 12 exams people must undergo to be listed on the national transplant waiting list - ranging from a chest X-ray to detect lung problems to checking for stomach ulcers to a gynecological exam for women.

"You have to make the decision," Samuel said of getting a transplant. "They don't just give you a kidney. There are extensive exams, including a psychological exam. All of your dental work must be complete and up-to-date, because you can't chance getting an infection."

While she waited, Samuel began kidney dialysis three days a week. She continued to work as a principal.

"You make a choice about dialysis. They can't make you do it," she said. "The hardest part is, they put in an artificial vein, and they have to stick a needle into that vein. After a while, you get used to it."

Dialysis draws out the extra water in the body that usually is eliminated by normally functioning kidneys.

She had a very specific diet she had to follow.

"I'd get cramps or have to spend an extra day at dialysis if I cheated," she said.

Then, there was the psychological trauma of dialysis. Samuel said there were times she walked in to find someone had died during dialysis and was being wheeled away, a white sheet covering the body. There were other times when someone lying next to her, receiving dialysis, passed away.

In 1992, she received the call that was supposed to change it all: A kidney is available. Get to Florida Hospital right away for your transplant.

"I think I was at school, and I had to leave," she said. "I came home and got my suitcase ready, and then a group of friends got me to the hospital."

But it wasn't to be. Surgeons opened the right front side of Samuel's body, attached the new kidney, leaving in the malfunctioning kidneys, which are in the lower back, closed her up and sent her home after just a few days. But something wasn't right.

The vein that led to the new kidney didn't work right. Samuel was placed on the waiting list again and went back to dialysis.

After six weeks, she returned to work, now as the principal at Oak Park Middle School.

Four years later, shortly after midnight one day in January 1996, the call came again.

"I didn't want to do it. I wasn't going to do it," Samuel says, laughing at herself. "For a solid year and a half, I didn't think about another transplant. The irony of it all was that I had kept a packed suitcase for four years, and I didn't want to deal with the misery and the bother and the things you have to go through to have any operation."

She told the transplant surgeon she needed to call someone before deciding whether she should accept the kidney.

She talked to her husband, called some friends and family members. They all encouraged Samuel to accept the kidney. Looking back, Samuel believes God was watching over her that night.

A caravan of friends and family escorted Samuel from her Fruitland Park home to Orlando, speeding past police officers in several towns, but never getting stopped. Friends prayed over the surgeons hands and over the new kidney shortly before the transplant.

Then came the news that the kidney was a 100 percent match, which is very rare.

Matching is based on geography, time on the waiting list, how sick a patient has become and organ size, shape, blood types and, for kidneys, on human leukocyte antigens, which are white blood cells. The greater the number of shared antigens, the better the match.

Typically, according to TransLife, better antigen matches are typically made between members of the same ethnic group, putting minorities at a disadvantage, because the majority of donors are white.

According to the United Network for Organ Sharing, which monitors the national organ transplant waiting list, 4,460 of the 6,183 organ donors in 2002 were white. Of kidneys alone, 4,105 of the 5,631 cadaveric donors in 2002 were white.

Almost 81,000 people are currently listed on the national organ transplant waiting list. About 24,000 transplants are performed annually, with about 6,000 of the organs coming from living donors and 18,000 from cadaveric donors. A cadaveric donor may donate multiple organs including heart, lungs, kidneys, liver, pancreas and intestines.

All Samuel knows about her donor is that she was a 32-year-old white woman from Wisconsin who died of a brain aneurysm. "That just doesn't happen," she said of the match. "I just knew then that this was my kidney."

Doctor's opened the left front side of Samuel, inserted the new kidney, attached it and closed her up. She now has four kidneys, although only one works. Doctors don't bother removing the old kidneys because they shrivel up when not used.

More than seven years later, that kidney is still functioning. Samuel no longer goes to dialysis. She's written an anonymous letter to the donor's family, which was passed along by TransLife.

She wishes she could meet the family members and thank them for saving her life, but they remained anonymous when they agreed to donate the organs.

"Sometimes, you just want to grab people and say, 'Thank you,' " Samuel said.

She doesn't allow herself to think about the fact that someone else had to die for her to receive the transplant. Nor does she allow herself to think that she may need to undergo the procedure yet again, if this kidney fails.

"You just don't worry about that part of it, because I was prepared to get well," she said of the Wisconsin woman's death. "I have to believe that this is my kidney, it's a part of me and it has to last."

Copyright © 2003 Florida Daily Commercial.

This article posted May 29, 2003.