Hoping fate, a heart will save her
Crystal Bermudez has less than a year to live. Her family doesn't have the money to fund the heart-lung transplant that could save her.
By TAMARA EL-KHOURY
Published April 25, 2005
If Crystal Bermudez could breathe on her own, if she could escape the humming of the machine that transfers oxygen into her body, take a few steps without getting exhausted and patch the hole in her heart, she'd ride a roller coaster.
She loves the thrill. The first hill is the best, she said.
But Bermudez, 27, is already strapped to her own roller coaster and may not live long enough to ride it out.
Bermudez, who moved to Largo in November, has congenital cyanotic heart disease with pulmonary hypertension, right ventricular failure, left ventricular cardiomyopathy and severe cyanosis.
In short, she was born with a hole in her heart. She was told in January that she needs a new heart, a pair of lungs and a way to do it quickly.
She plugs her ears as her husband puts up a single finger and whispers she has less than that number of years to live. Simple things like showering and walking aren't so simple anymore. She knows her clock is winding down but doesn't know how much time she has, and she doesn't want to.
She is trying to get through one obstacle at a time. The latest struggle is getting her case approved by St. Luke's Hospital, a Mayo Clinic hospital in Jacksonville. She has a consultation session next month to see if she'll be approved for an organ donation list.
Last year, 39 heart-lung transplants were performed in the United States, according to the United Network for Organ Sharing.
She had to quit her waitressing job. Her husband, Gilbert, who served in the Marine Corps, makes $7.80 an hour as a guest services runner at the TradeWinds Island Grand Beach Resort in St. Pete Beach.
He hasn't worked since a car accident last month required him to get hand surgery, but he hopes to be back at work today.
Her mother, Elizabeth Kraft, lives just a few miles away. She's trying to come up with ways to fund the potentially long stays in Jacksonville. A Web site, www.savecrystal.org is under construction to raise money on Bermudez's behalf.
The Bermudezes say the Mayo Clinic in Jacksonville is the only hospital they have contacted that will perform the double transplant, which could cost over $250,000, and accepts Medicaid. They won't know the total cost of the treatment, transportation and housing until they talk to clinic representatives.
The only other heart-lung transplant centers in the state are Shands Hospital at the University of Florida in Gainesville and Jackson Memorial Hospital University of Miami School of Medicine.
If approved, Bermudez will be put on a national waiting list. As of Friday night, 165 people were already waiting for a heart-lung transplant, according to the organ sharing network. Heart-lung donations are given based on the location of the person to a matching organ and the severity of the person's condition.
In this area of the country, the wait time can be a year or two, said Francisco Alvarez, a pulmonary doctor at the Mayo Clinic in Jacksonville.
Heart and lung donations are complicated by the fact that the organs can only be out of the body for a matter of hours. Upon getting the call, the next challenge is finding a way to get to a matching organ within two hours. Gilbert Bermudez said a charity, Angel Flight, has agreed to consider their case and fly them to Jacksonville, if the weather permits.
For at least three years Bermudez suffered from dizzy spells, shortness of breath, fatigue and a runny nose. Doctors at Camp Lejeune, N.C., where her husband was stationed, gave her cold and sinus medicine and treated her for dehydration. They ran an EKG test measuring the electrical activity of the heart and reported everything was normal.
But three years later, in a new state and a new job, Bermudez couldn't finish her shift at Bob Evans on Ulmerton Road. She felt nauseous, dizzy and her fingers and lips were turning blue from a lack of oxygen in her blood. An EKG test showed irregularities, and Bermudez was hospitalized.
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She says she doesn't cry. She finds comfort in an online support group for people who have already had or are waiting for a heart-lung transplant. They chat every Friday night about medications, doctor visits, personal stuff. She has the phone number of the site's manager taped to her computer. Every now and then she calls with questions.
"You have to stick on the positive side to get through all this," she said.
The positives include the re-emergence into her life of both her father and her best friend from high school, but when prodded, she admits she's frustrated.
"I feel angry. I need a transplant but I need money to get one," she said. "It just all boils down to money."
She doesn't think about worst case scenarios. She has taken up beading to pass the long hours at home where her tabby cat, Peaches, and cocker spaniel, Sadie, keep her company.
She shows off her wrists, adorned with homemade bracelets with butterfly beads. She plans on making bracelets for friends and family so they will keep her in their thoughts.
The Bermudezes met in the marching band at Waite High School in Toledo, Ohio. She was a freshman in the flag corps, he was a sophomore in the percussion section. She forgot her uniform for a parade. He saw she was upset and tried to console her.
They became friends, and only friends, because she was dating someone else until her junior year. A week after they broke up, Gilbert asked her out.
"He just kind of slid right in like "Hey, here's my chance,"' she said.
Their first date was to Sandusky, Ohio, and the Cedar Point amusement park home of her favorite coaster, the Millennium Force. She wore a deep purple dress to his senior prom. He requested her favorite song, Hero, by Mariah Carey.
After graduating in 1995, Gilbert left for training with the Marine Corps at Parris Island, S.C. He came home for Christmas in 1996 and in front of his family and her mother, bent down on one knee and proposed as she unwrapped her gift. She hated being put on the spot in front of everybody. After a painfully long pause she said yes.
Together they are now trying to deal with the financial and emotional burdens of her illness.
Gilbert admits he cries but keeps it from his wife. Sometimes the stress comes out in sarcastic outbursts. He watches professional wrestling to distract himself. He has considered looking for another job or going to trade school but he's afraid to leave the little income he's bringing in now.
"He's stressing too," Bermudez said of her husband. "I know it. He doesn't want to show it." At the end of the day, it's all a matter of fate, the Mayo Clinic's Alvarez said. Even someone who is first on the list might not be a match for the donor.
Bermudez's mother recognizes that. "The worst part about that is somebody has to die," she said.