Three kidney donations make for one close family

Three kidney donations make for one close family

Thursday, May 24, 2007
East Bay Rhode Island

It's all in the family and this family is very close. Within less than two years, three women in Westport -- including two sisters and a daughter -- will have donated their kidneys to save other family members with polycystic kidney disease.

The two sisters are Christine Earle and Melissa Boudria. Mrs. Earle donated a kidney to her cousin, David McGinn, about a year ago.

On Tuesday, May 8, Mrs. Earle's stepdaughter, Kristin Wilkinson, successfully gave one of her kidneys to David's sister, Charlotte Toddings. In July, Ms. Boudria is scheduled to give a kidney to Charlotte's son, Kevin, who also has Down syndrome.

The family ties may sound complicated but as Ms. Boudria said, "We have an extended family all sorts of ways and we're all extremely close."

Now that she's back home, Ms. Wilkinson, who admitted to being nervous before her surgery, said, "It's all good. The first three days are hard but after that, you feel better. When I saw Charlotte after the surgery, it made me realize that I absolutely did the right thing. She was glowing and had color in her face. She was on cloud nine."

Mrs. Earle explained why she wouldn't hesitate to donate a kidney to her cousin, David. "My cousin, David; his older sister, Charlotte; and myself, we spent summers together. David and I would spend weekends together at my grandparents'. We spent Thanksgivings together and Fourth of July parties."

She added, "David is 11 months older than I am. We were at his niece's wedding in Philadelphia and he announced to us that he needed a kidney transplant. I said, if you need a donor, I'll be tested. I agreed to go forward only because David and I are very close. I don't have young children at home. My boss is flexible. It was something I felt I wanted to do for David."

Mr. McGinn lives on Cornell Road now and Mrs. Earle lives on Westport Point, but they grew up outside of Boston. Their mothers were sisters and their fathers were very good friends. Before Hurricane Carol in 1954, they used to rent side-by-side cottages at Horseneck Beach. On Sundays, they gathered for cookouts.

"We've been close our whole life and still are," Mr. McGinn said.

He described his polycystic kidney disease as comparable to a thin blanket with burrs. The cysts continue to grow and can rip the kidney wall apart. If he turned the wrong way, they would rupture, sometimes causing internal bleeding.

"Sometimes they heal and sometimes they don't," Mr. McGinn said.

Before the kidney transplant, Mr. McGinn told people his life wasn't worth living with all the pain and discomfort. "I said, the way I am now, I don't want to live."

Thankfully, his cousin, Mrs. Earle, came to the rescue.

Mr. McGinn recalled waiting in the pre-operation room with her. "We were actually side by side holding hands," he said.

Mr. McGinn said his cousin was nervous. He just wanted to get it over with.

The operation, which took place at Rhode Island Hospital, was successful. "Everything went very smoothly," Mrs. Earle said. "As soon as David received my kidney, he was instantly well. He was clear of any polycystic kidney disease."

"I went through with flying colors," Mr. McGinn said. His family members, who gathered in his room after the operation, told him he was alert and the color had returned to his cheeks.

Mr. McGinn does have to take anti-rejection drugs and other medication for the rest of his life but now there will be a "rest of his life." Because of Mrs. Earle's quick decision to donate her kidney, he was also able to avoid dialysis.

Mr. McGinn is still waiting for the area where he had stitches to completely heal but, he said, "I do everything I've ever done," like skiing, running and walking. "I'm healthy. That's the main thing."

Mr. McGinn was only 18 years old when his father, who was 48, died of polycystic kidney disease. His father was the only one of four siblings to contract it.

The genetic disease, which can sometimes skip a generation, goes way back in their family. "My grandmother was one of 13 children and all 13 died of the disease," Mr. McGinn said.

After his father died, Mr. McGinn said he felt an even stronger need for family bonds with his cousins, uncles, and other family members. He visits Mrs. Earle about three times a week "and we talk every day. We're family. Chris and I are still very close."

Asked if David had experienced any of those sensations people talk about from receiving someone else's organ, Mrs. Earle said, "Yeah, seeing that he got a female kidney. He said he never liked vodka before."

"We joke about it," Ms. Boudria said. "It's kind of bizarre."

Mr. McGinn said, "She told me I was going to acquire a taste for vodka because that's what Chris drinks."

In actuality, though, Mr. McGinn said the stories about vodka and other habits are just jokes.

He is eating more. "I was a fussy eater," he said.

Mr. McGinn said he could be eating more varied types of food because he is feeling better overall, however. "Kidneys affect other parts of the body."

Kidney donors do not have to be family members. For example, Kristin is not blood-related because Mrs. Earle is her stepmom. Yet she turned out to be a better match for Mrs. Earle's cousin, Charlotte, than Ms. Boudria.

Mrs. Earle said the success rate is better when there is a living donor. When a patient receives a kidney from a living donor, the kidney often functions for about 21 years. By comparison, a transplanted kidney from someone who has passed away functions for about 14 years.

For those who do not have a living donor, the wait can be long. There is such a shortage of donated organs and organs that are a good match, many people spend years on a waiting list. In some cases, they die before their turn comes up or they find the right match.

Medical advances are being made all the time. Although there is some risk of damage to other organs when a kidney is removed, such incidences are fairly rare.

Ms. Wilkinson's operation at Mass General involved two small incisions in the rib area and a larger incision on the lower abdomen. Mrs. Earle's surgery at Rhode Island Hospital involved one incision, about three inches long, Mrs. Earle said the difference could be partly because of her earlier surgeries or techniques preferred by the two hospitals.

This close family is also active in helping people with other major diseases. They hold a fundraiser every year at Halloween for Alzheimer's, which three relatives have suffered from, including David's mother, Christine's mother and an aunt. Last year, their Alzheimer's fundraiser was sold out.

Ms. Wilkinson just seems to have a generous spirit, whether for a family member or not. Years ago, she offered to donate bone marrow to a patient with leukemia and got on the national register. "It took 13 years before I got a call as a match for a woman with leukemia in 2004," she said.

Thanks to medical advances, the bone marrow transplant was not dangerous or complicated, she said.

Ms. Wilkinson said she hadn't seen Charlotte Toddings for about a year before she donated her kidney to her. She saw her briefly before the surgery and then saw her every day when they were recovering in the hospital together.

She joked that when they wheeled her to see Charlotte one day after the kidney transplant, she told the doctors, "I'm visiting my kidney."

Ms. Wilkinson said her real mother was worried beforehand but when she saw how well Charlotte was doing after receiving the kidney transplant, she said, "I know now why you did this."

The generosity of some members of this family toward others is difficult to convey in words but Mr. McGinn described it best when he said, "It's like someone has given you the gift of life."

By Peggy Aulisio

paulisio@eastbaynewspapers.com

PHOTO: Westport residents (from left) Christine Earle, Kristin Wilkinson and Melissa Boudria have donated or plan to donate kidneys to family members with Polycystic kidney disease.