Two women encourage others to become donors

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Blessings of hope
Two women encourage others to become donors after their own transplant experience.

Diana Bell
POSTED: October 12, 2008

Fact Box

Want to go?

What: John Berry concert to benefit the National Transplant Assistant Fund in honor Janet Parsons Marsceau

When: 7 p.m. Oct. 18

Where: New Life Community Church, Tabler Station Road, Inwood

Cost: $20 for adults, $10 for children

For tickets, call (304) 754-9187

To read more about Janet and Diana's story, visit http://blessingsofhope.googlepages.com/home

SHENANDOAH JUNCTION - Janet Marsceau has had polycystic kidney disease since she was 19 years old. Except for high blood pressure, she had been symptom free. But over the years, her creatinine levels kept gradually creeping up. In August 2007, doctors told her it was time to start thinking about beginning the transplant process.

But before that could begin, Marsceau, her husband Van, and her son Jonathan were involved in a serious car crash. On the evening of Oct. 28, 2008, they were traveling on W.Va. 9 and Mission Road. It was on that crooked, two-lane road that another car hit them. As a result of the accident, two young men died, Marsceau suffered serious injuries, including to her kidneys, her husband had multiple injuries and her son suffered seatbelt burns.

Marsceau was taken to Jefferson Memorial Hospital and then transferred to Winchester Medical Center. She suffered a shattered elbow, broken ribs and trauma to the kidney area. She was in the hospital for nearly two weeks.

Marsceau participated in physical therapy through February 2008. At first her doctors thought the accident might have worsened the damage to her kidneys, but they later said that it didn't really affect her condition.

Polycystic kidney disease involves cysts filled with fluid forming in the kidneys. That causes the kidneys to enlarge, seriously reducing the function of the kidneys until the organs fail. Both Marsceau's mother and sister have the disease.

After finishing physical therapy, Marsceau could finally begin the transplant process at the University of Maryland hospital. Getting started included an all-day evaluation where 15 vials of blood were taken to be tested. She was then given a list of tests to have run.

She was also given forms for potential living donors.

Marsceau's husband of 24 years wanted to be the first to be tested as a potential donor. While 10 people offered to be tested, four actually went through with it, including Marsceau's brother-in-law, Diana Martin and another woman from Fellowship Bible Church, where Marsceau's husband pastors.

Marsceau's husband was not a match because of a difference in blood type. Her brother-in-law and the other woman from church weren't matches either. But Martin was called a "very good match" because she and Marsceau matched up in two of six categories.

Martin says she's known Marsceau for a long time through church, but wouldn't have considered the two as very close. "It was the accident that first made me realize how special Janet was to me," she says. "I was devastated."

It was through that ordeal that Martin found out about Marsceau's disease. When she overheard Van talking about a transplant, the thought entered her mind that she could do that. The next time she heard about it was when Van was being tested.

Knowing her blood type was the same as Marsceau's, Martin told her husband about her thoughts of being tested as a donor. Prior to that, her husband saw something about a kidney transplant on CNN and thought that his wife could do that, Martin says.

So she decided to make the offer, which was "very uncomfortable."

"I tried to bring the conversation around to that," Martin says.

Then she just told Marsceau that she would be interested in getting tested.

The conversation was just as uncomfortable for Marsceau. "It's awkward to be the one hearing it, too," she says. Marsceau says her thoughts included, "How could they do that for me?"

"It's awesome," she says. "You don't want to be flip."

After that was settled, Martin says Marsceau gave her the forms to fill out, checking to make sure she still wanted to do it. Martin says she was always told by doctors that she could back out at any time. And the two had discussed that if Martin had any doubts or fears, she would immediately tell Marsceau.

"I was really excited when I got the results," she says. "I actually would have been disappointed."

Her husband had the same reaction. "He was thrilled," Martin says. "He said, 'I knew it was going to be you.'"

Marsceau says Martin's results were the second to come back, on March 27. Because doctors were so positive and encouraging about them, she says she thought, "why wait?"

Knowing that she had a donor was "kind of surreal, like I was in a dream," Marsceau says.

While they both breathed a sigh of relief that that decision had been made, the real work was still to come. They each underwent a lot of testing, lots of blood work.

It wasn't long after that they received their surgery date. They were told on April 10 that the transplant would take place May 28. Although it seems pretty quick, the process felt slow to Martin. They were watching her liver and took blood from her up until the night before the surgery date. If results came back negative, the surgery would have been off.

The process was a long one and intense at times. "I was just kind of like, grit your teeth and do it," Marsceau says. "It's in God's hands."

Martin says the day before surgery she didn't have much time to really think about it. "It was just a matter of just praying, if this is Your will," she says.

Martin says she tried to prepare herself for disappointment, but she went back and forth between the two extremes of things going well and not going at all. "There is no way to prepare yourself emotionally," she says.

She knew what was going to happen, in a "very abstract" way, because of watching a video online of the surgery. "I knew what to anticipate," Martin says.

It was about 8 p.m. the night before surgery when Martin found out her tests came back OK, meaning the transplant could go on. Marsceau, who was waiting on test results over a long weekend, was given clearance even later that night.

"I was very relieved and thankful we could go forward," Marsceau says.

Both women awoke around 3 or 3:30 a.m. to drive to University of Maryland hospital. Once there, they didn't have time for a special moment before surgery, something they wish they could have shared. "It went very fast," Marsceau says.

Upon waking up, Marsceau says she felt a peace, "very tranquil," she says.

Martin recalls asking how Janet was doing. "I just wanted to see Janet and see her feeling better," she says.

From there they both had several days of recovery ahead of them in the hospital. Martin was home in four days while Marsceau was out in eight. She ended up back in the hospital because the medicine she was on was too strong for her system and it caused stomach problems. Once that was straightened out, Marsceau really began to feel better. She went back to Curves in August and by September she could say, "I feel great."

She is still feeling great, able to breath deeply and just be comfortable.

By seven weeks, Martin says she felt like she didn't even have surgery. She was back to running in four weeks, although that might have been pushing it a little.

Both women were overwhelmed by the support they received from family and friends. "It was a great outpouring of love," Marsceau says. It was neat to see the different ways people helped out, she adds.

Her family had food provided for them for more than a month, and Marsceau had her own entertainment committee.

Martin says people helped her out by staying at her house when she was in the hospital and her husband was with her, and carted around her eight children. She also received 11 offers for a recliner, which she found out she needed to be comfortable. She was given one and loaned another one.

The timing of the surgery was perfect for both women. Marsceau, who teaches piano lessons, was on summer break and Martin, a stay-at-home mom with children ages 3, 12, 13, 14, 15, 16, 17 and 18, just had her children finish out the school year.

Chris, her husband of 20 years, was at the hospital with her the entire time, taking off with her when she came home, too. "I'm really thankful he planned to stay off," Martin says.

Both women encourage others to consider donating their organs. It's a big commitment, but Marsceau says, "there are so many people in need."

Many of them die because they have no one willing to be tested or donate an organ to them, she says.

Martin says she would "absolutely" encourage others to do what she did. They should realize that it's "very time sensitive." But the rewards outweigh any negatives.

She is now participating in a three-year follow up study so doctors can see if there are any side effects down the road

Although it's a serious situation these ladies have gone through, both can laugh about it. "She's always with me," Marsceau jokes.

"There will never be a way to separate that bond," she says on a more serious note. "There's a lifetime connection."

So many lessons were learned through the experience. "I'm sure it increased my trust in the Lord," Marsceau says. "It makes you appreciate relationships more in the family and friends both."

"I hope that I will be better at helping people in need," she adds.

Marsceau hopes that others will look at Martin's "example of selflessness" and be inspired by it.

Martin hasn't stopped helping either. Provided that she feels up to it after a bout with bronchitis, she will run a half marathon Saturday in Baltimore to raise money for the fund in Marsceau's honor to help with medical expenses.

While Marsceau's insurance covered all expense related to the hospital and surgeries, prescriptions are a bit pricey. Marsceau has to be on anti-rejection medicines, anti-viral, anti-baterial and anti-fungal medicines. Just one of those costs $1,000 every two weeks. She will be on that for six months to a year. While she's not sure about out-of-pocket expenses after insurance, doctors have told her her medications will cost about $20,000 a year.

Lorri Schwartz has been working hard on a benefit concert with country artist John Berry at 7 p.m. Oct. 18 at New Life Community Church in Inwood. See the Oct. 16 edition of Weekender for more information, and an interview with the musician.

- Staff writer Diana Bell can be reached at (304) 263-3381, ext. 136, or dbell@journal-news.net.

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