In 2003, Michelle Moulton was a Board Member of the Redmond/Sammamish Boys and Girls Club. She was a PTSA member. She loved being active with her two young kids.

Now, she gets excess fluid from her stomach removed every Tuesday morning.

Last week, doctors removed four liters of fluid retained due to her failing liver. Even just a day after the tapping, Moulton’s bloated middle rounds out to the size of a bowling ball and the fluid presses uncomfortably on her stomach, shrinking her appetite and stealing her energy.

“I get tired really, really easily — it’s a lot of work carrying around a big abdomen,” she said in a soft, slow tempo. “My liver doesn’t work well, so it’s not getting rid of the toxins.”

Moulton’s liver is failing. At 46 years old, she needs a transplant or doctors say she will die in the next two years. But the $250,000 surgery dwarfs the benefits available from her skimpy medical coverage.

Her husband, Marion Moulton, has been a painting contractor for 20 years and owns his own business; but because he’s not part of a large company, his insurance policy is less than generous. Currently, their health care provider is offering them $30,000 for the operation — less than an eighth of the price.

They were so desperate that the couple even contemplated divorce for the sole purpose of leaving Michelle without assets so that she could qualify for better coverage.

“We just think that everybody should be entitled to health care,” Marion said. “It shouldn’t be based on where you live or what you do.”

The family’s financial plight began when Michelle’s rheumatologist diagnosed her with mixed connective tissue disorder on July 14 in 2003. He prescribed several drugs, including Methotrexate.

Ten months later, Michelle’s body still ailed, with no signs of improvement. She decided to get a second opinion.

“I kept just getting sicker and I thought, ‘I was perfectly fine before, what’s going on?’” she said.

After meeting with two different physicians at the University of Washington and another at the PolyClinic, she was shocked. All three told her she never had mixed connective tissue disorder, and never needed any of the drugs that had stolen financially and emotionally from her family for almost a year.

Now, Michelle lives constantly with the effects of her rheumatologist’s alleged misdiagnosis through her failing liver.

“If you look up Methotrexate, the first thing that comes up under the side effects or warnings is liver damage,” Michelle said.

Despite the possibility of malpractice, Michelle and her family decided not to sue her doctor. Trial dates, legal fees and awful memories weren’t worth their day in court.

“It was taking five years in King County to get a trial date,” she said.

Instead, Michelle uses her experiences to lobby for better health care for others. She’s testified in front of the House of Representatives in Olympia, talked to local representatives and senators and presented in front of the Blue Ribbon Commission, a group formed by Governor Christine Gregoire to make quality health care more accessible. Michelle has also recently been featured in The New York Times and in other news pieces.

Her proudest moment was lobbying in 2005 for Initiative 336, which was aimed at making doctors’ histories with malpractice more transparent and getting rid of negligent physicians.

“It just brought in a lot of patient safety,” she said.

As Michelle constantly lobbies on behalf of the people in her community, they continually support her by providing home-cooked meals, babysitters and other services.

“I race her to the hospital every now and then so she doesn’t need an ambulance,” said Cheryl Phyllips, one of Michelle’s neighbors.

Another neighbor created a Web site, friendsofmichelle.com, in order to raise awareness and generate donations for Michelle’s liver transplant. Until she receives a new liver, all Michelle can do is work so that no other family suffers through a similar health care nightmare.

“I think [health care] should be a No. 1 priority,” Michelle said, wrapping her white cardigan a little more tightly around her. “It doesn’t matter whether you’re the healthiest person – nobody knows if they’re going to get sick or injured.”