Running out of money, running out of time, running out of ... life
By SHERRY HALBROOK
For PEF members Ena and Carlos Quiles, the governor’s attempts to withhold raises and force state employees to lose a day of pay each week, couldn’t have come at a worse time.
Ena is fighting for her life as she waits and prays for a liver transplant. Meanwhile, the medical bills are piling up, in spite of their state health benefits.
And as Ena’s strength fades, she was forced in April to take unpaid medical leave from her job as a Spanish-speaking labor services rep at the state Labor Department (DOL) in Albany.
“We just lost half our income, and now the governor wants to take my 4 percent raise and another 20 percent of my paycheck,” Carlos said. “We’ve already used up most of the $2,100 I put into my health care flexible spending account for the whole year.”
For them, the federal court’s temporary restraining order blocking the furloughs and withholding of raises is a financial lifeline that can help keep Ena alive during the nerve-wracking wait for a transplant.
It’s a crisis that’s been brewing for several years.
“We had such great plans when we came to Albany,” Carlos said. “We had great jobs and we began planning for our retirements, how we would get an RV and travel everywhere together.”
The Quiles and their three children came to New York from Puerto Rico in 1987. Ena was the first to go to work for DOL, starting at the Glendale office in 2001. Carlos also went to work for DOL, but was able to transfer to his engineering job at the state Transportation Department in 2003, shortly after they moved to Albany.
Ena’s medical problems began with bouts of internal bleeding, and while she was hospitalized for it in 2007, she faced a new crisis.
“I had been in the hospital for four days, when I suddenly lost my vision,” Ena said. “They don’t know exactly what happened, but they think the loss of blood caused my blood pressure to drop too low. Now, I can only see a narrow band at the top and at the bottom. I can’t see anything in the middle. I had to be retrained at the DOL for a different job and to use special software that talks to me.”
That internal bleeding seems to have been caused by pressure an enlarged liver was placing on her esophagus and other organs. The cause of the enlarged liver seems to be inherited, and that compounds the problem.
“My sister was tested to see if she could donate part of her liver to me, but she seems to have the same problem I have,” Ena said. “Carlos wanted to give me part of his liver, but he is over the age limit of 55 for live donors.”
“I need a liver,” Ena said. “I am hoping someone with Type O blood will help me in time.
“Not being able to go to work is the hardest part for me,” Ena said. “I love my job. Now, I’m stuck in the apartment all day, every day, except when I go to my doctors’ appointments.”
Blind and alone all day, Ena struggles against depression.
“Our daughter is expecting our first grandchild in October, but I wonder if I will ever get to hold it,” Ena said.
Bernice
Jones, a retired PEF Executive Board member and council leader from the DOL
in New York City, understands exactly what Ena is going through. She, too,
once waited in desperation for a liver transplant. And when it came, June
22, 1994, it made all the difference. She returned to work in March 1995 and
retired in November 2008.Although she can’t give Quiles part of her transplanted liver, Jones is giving her a different kind of donation. She’s transplanting her hope.
“I called Ena and we talked a long time,” Jones said. “I told her I will be here for her for as long as she needs me. I have very strong faith and I never had any doubts I would get my transplant. I know Ena will get hers too. We are partners now. I told her, ‘Just keep on praying, and your prayers will be answered.’
“It’s very hard, but it’s so important not to lose hope.”
(More information about liver donation may be found online at www.livingdonorsonline.org, www.organdonor.gov and www.liverfoundation.org.)