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Tampa General Hospital lung transplant patient's family needs $10,000 to save his life

TAMPA — The disfigured lungs that brought Enock Mezilas to Tampa General Hospital will never be strong enough to carry him out. Not to pick up the high school diploma he earned last month, nor to realize his dream of becoming a pharmacist.

The 20-year-old will die during this hospital visit, his doctor says, unless he receives a lung transplant.

But his family doesn't have the $10,000 needed to save his life.

"We need help," said his mother, Ilna Pierre, sobbing as her son shared his story.

"Stop crying, mom," said the lanky young man, an oxygen tube in his nose, along with the two chest tubes that help to clear his lungs.

"I try not to think bad thoughts. I came this far," he said. "I'm fighting for my life right now."

• • •

Everyone celebrates when the gift of life is procured for those whose hearts, lungs or kidneys have failed them.

But behind each life-saving transplant is a brutal calculus. Demand far exceeds donated organs. So part of the decision about who should get them centers on resources — including whether a recipient can afford to care for a new organ.

That can include financing not just the procedure, but also living expenses during recovery and the pricey medications needed, lifelong, to keep the body from rejecting the organ.

The total cost of a double lung transplant can exceed $657,000, estimates the United Network for Organ Sharing, which manages the nation's transplant system.

"It's a great thing to be able to provide for the transplant that puts a healthy organ in someone and 'saves them,' " said Katrina Bramstedt, a California-based transplant ethicist.

But without good aftercare, she noted, "the patient will not survive. The organ will reject. That's really not a good allocation of the organ."

Financial issues come up frequently at transplant centers. But Tampa General officials said it's rare for them to have a case in which they can't do anything.

State or federal assistance isn't an option because Mezilas has had his green card for only one year. His parents, originally from Haiti, immigrated legally from the Bahamas when he was 9. But the couple, who live in Fort Lauderdale, didn't realize their child should get a green card, too. They thought green cards were only required for employment. Only after he became critically sick did they learn he needed a green card for public health benefits.

His father's health insurance covers the transplant surgery, but the co-pay for medications is so high they need additional financial aid. The co-pay for anti-rejection drugs — which must be taken for the rest of his life — could run $300 to $600 each month.

Mezilas' father works in maintenance at an assisted living facility; his mother would have to take several months off her job as a home health aide to care for him during the recovery. The social worker assisting them at Tampa General says they can't afford to save their son and still provide food and housing for his two younger siblings.

In his case, the transplant team has determined that the family needs to raise at least $8,000 to $10,000 to cover his post-surgery medications and living expenses related to his care.

• • •

Until he was 13, Mezilas loved playing sports, especially basketball. When he started feeling short of breath, doctors said it was asthma. As he became increasingly fatigued, they diagnosed him with tuberculosis.

A year later, a lung biopsy revealed the real problem — a rare and extreme case of acid reflux.

Acid from his stomach had bubbled up into his lungs. Only about one to two percent of reflux patients experience such a severe complication, said Dr. Tarik Haddad, his transplant physician at Tampa General.

The problem can be fixed surgically, but Mezilas had been misdiagnosed for so long, by the time he had the procedure the damage was done.

Hospitalizations interrupted his freshman and sophomore years of high school. By mid-junior year, he was studying at home and taking online courses, earning A's and B's. He stuck with his studies, even after missing graduation with his class in 2009.

"Just last week, I finished up my high school diploma," said Mezilas, speaking quietly, with great effort.

His options for a lung transplant were especially problematic. His father's insurance wouldn't cover the surgery at the transplant center closest to the family's home, but it does provide benefits at the Mayo Clinic in Jacksonville and Tampa General.

He came close to getting lungs at the Mayo Clinic, but the donated organs came from a patient with Hepatitis B, and he and his parents declined them. Now doctors say he can't wait much longer.

"Medically, he's a decent candidate to be transplanted; surgically it's doable. We can get him the lung transplant," said Haddad. "It's just, can he afford the medications and the care afterward?"

"Unfortunately, in his condition, he's going to get the transplant this hospitalization, or he is going to die."

Times researcher Shirl Kennedy contributed to this report. Letitia Stein can be reached at lstein@sptimes.com or (813) 226-3322. For more health news, visit www.tampabay.com/health.

How to help

Enock Mezilas

Through the National Transplant Assistance Fund, family and friends are trying to raise money for Mezilas' lung transplant. Contributions can be made online at NTAFund.org or by calling 1-800-642-8399. Or mail checks made out to NTAF Southeast Lung Transplant Fund (note in the memo section: in honor of Enock Mezilas) to NTAF; 150 N Radnor Chester Road, Suite F-120; Radnor, PA 19087.

Tampa General Hospital lung transplant patient's family needs $10,000 to save his life 05/04/11 [Last modified: Wednesday, May 4, 2011 11:48pm]
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