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By Melinda Carstensen, ,
Published December 22, 2015
Mere minutes before Maria Gamboa’s surgeons planned to hook her up to a machine that would have oxygenated her blood and sustained her vital organs, Gamboa received the news: Doctors had identified a donor match to replace her failing lungs.
The National Institutes of Health (NIH) estimates an average of 79 people receive an organ transplant every day, but Gamboa’s path to this point was more circuitous than that of many patients’.
While battling an incurable disease that progressively scarred and shrunk her lungs, 44-year-old Gamboa flew across the globe in search of a surgeon who would perform the double lung transplant and save her life. And then, when she finally did find a hospital that would treat her— the Cleveland Clinic, in Ohio— the Caracas, Venezuela, native needed to find a way to foot the $250,000 operation bill.
To help cover what would amount to nearly $700,000 in medical and travel expenses, Gamboa’s friends and family sold handmade bracelets. They established a foundation called “Respirar es Vivir,” which translates to “Breathing is Life,” and today continue to sell bracelets to benefit other Hispanic patients who can’t afford crucial respiratory care.
“My main dream is to give oxygen to people who need it,” Gamboa, a Ph.D. candidate in entrepreneurship at Universidad Metropolitana in Caracas, who now lives in Miami, told FoxNews.com.
Searching for a surgeon
Gamoboa, who has dedicated her life to academia in Venezuela, Spain and the United States, was hospitalized and diagnosed with a respiratory infection that would eventually progress to scleroderma with pulmonary fibrosis. Scleroderma is marked by a buildup of collagen in the skin, and, in rarer cases like Gamboa’s, in the body’s internal organs. Pulmonary fibrosis indicates scarring and damage to the lungs.
“By the time [scleroderma] had been diagnosed, there had been some progression to the esophagus and stomach and some blood vessels,” Wayne Tsuang, Gamboa’s doctor and a medical lung transplant physician at the Cleveland Clinic, told FoxNews.com. Hardened skin and temperature sensitivity are often the earliest symptoms of scleroderma, and that was how the disease presented in Gamboa.
Tsuang estimated there are on average 200,000 new cases of scleroderma each year. While scientists don’t know the cause of the disease, they have observed that an overactive immune system can accelerate it.
In 2010 Gamboa moved in with her mother, Magali Itriago, in Venezuela because she needed help with daily tasks like using the restroom. In 2011, her scleroderma progressed to the point that doctors in Venezuela determined she would need a double lung transplant. That year and up until her transplant, she began using supplemental oxygen dispensed from a canister.
First, Gamboa sought a surgeon to perform the transplant in Spain, Brazil and Colombia— opting for places with an abundance of doctors who speak Spanish, which is her first language. But hospitals in those countries rejected Gamboa because they prioritize their native citizens for organ transplants. So she traveled to the U.S. and looked for a surgeon in California, Florida and then finally Pittsburgh. They all said her case was too severe and rejected her as well, but in Pittsburgh a doctor referred her to the Cleveland Clinic, which has one of the leading lung transplant programs in the U.S.
In October 2013, Gamboa flew with her mother from Caracas to Miami, but when she tried to fly from Florida to Cleveland, the airline wouldn’t let her onto a commercial flight with her supplemental oxygen. They put her in an air ambulance, and during the journey Gamboa remembers the tightness in her throat due to the hardened skin in her esophagus caused by scleroderma, as well as fear for her future. But she mostly remembers feeling concern for her mother, who remained by her side but couldn’t understand nurses’ explanations in foreign English. One nurse offered her solace.
She told Gamboa, “Tell your mother that you are in America, and we are going to save your life,” Gamboa recalled, holding back tears. “I remember this very much. It was so emotional when [I] saw my mom crying.”
In Cleveland, doctors confirmed that Gamboa would need a double lung transplant, but first they recommended pulmonary rehabilitation to ensure the rest of her body was as strong as possible. Gamboa and her mother returned to their new home in Miami, where warmer winters would be easy on her lungs compared to Ohio’s harsh winters, and returned to Cleveland for follow-up evaluations in January 2014 and June 2014.
Doctors said they were satisfied with her progress— the pulmonary rehab worked. But before Gamboa could get on the waiting list for a new set of lungs, she’d need to prove she was financially able to cover the cost of the procedure, as she did not have health insurance in the U.S. Thanks to Gamboa’s mother and aunt, Mirta Itriago— who began selling handmade bracelets in February 2012 when Gamboa’s health was declining— she was on her way to raising the $250,000 she’d need to foot the bill.
Fighting for her life
Spreading the word via Facebook, Instagram and Twitter— racking up more than 17,000 followers on Gamboa’s personal Instagram alone— Gamboa’s aunt and mother sold 65,000 multi-colored cotton bracelets with nickel charms for about $5 apiece. Doctors placed Gamboa on the waiting list for a double lung transplant on Oct. 3, 2014.
About three weeks prior to receiving news of a transplant match, Gamboa’s condition worsened and doctors hospitalized her. With a nasal cannula, she had been consuming up to 35 extra liters of oxygen per minute, which wouldn’t have been possible in an outpatient setting. As she got sicker, doctors started talking about the possibility of putting her on an extracorporeal membrane oxygenation (ECMO) pump— which would have taken over the work of her heart and lungs— and she became higher priority for the transplant list.
“Without a lung transplant, [Gamboa] would have died— there’s no question,” Tsuang said.
The night before her transplant surgery on Dec. 23, 2014, Gamboa wrote a draft email with her finance and work information for her mother in case Gamboa died. Doctors had her sign consent forms indicating whether she wanted to be hooked up to the ECMO.
“I was fighting so hard, but I still had hope,” Gamboa said.
When doctors went to print the final forms, they received news of a potential donor with Gamboa’s blood type. The next morning, they confirmed the lungs were the perfect size for Gamboa and conducted the procedure.
Lung transplant surgeries for patients with scleroderma as advanced as Gamboa’s was— her lungs had been functioning at only 10 percent— are risky, said Douglas Johnston, staff surgeon in the department of thoracic and cardiovascular surgery at the Cleveland Clinic. But Gamboa’s surgery went smoothly: It took a predicted four and a half hours, and surgeons used a heart-lung machine to perform the work of her heart and lungs as they replaced each lung one at a time.
“I think [Gamboa is] an amazing patient,” Johnston told FoxNews.com. “Her dedication to getting herself funded to have a transplant, and the campaign she did with her family, is inspirational to other patients and to us as physicians.”
Today, Gamboa has returned to her academia, conducting her study remotely and preparing an online course for her university. While her lungs are fully functional, she is on an immunosuppressant, which increases her chance of infection but which she must take for the rest of her life to ensure her body doesn’t reject the foreign organs. Johnston said it’s unclear at this point whether she will need another transplant surgery in her lifetime.
Gamboa was discharged from the Cleveland Clinic on Jan. 9, 2015, and since recovering she has acted as a spokeswoman for Lifebanc, a northeastern Ohio-based nonprofit organ procurement organization, to help raise awareness of organ transplants and donations in the Hispanic community. Lifebanc aims to help link organ donors and recipients.
Gamboa said she hopes to inform people from countries like Colombia where organ transplants aren’t the norm that the procedure can be lifesaving.
“I think when they see a person like them talking in the same language … you can create a little more awareness about organ donations because they’re looking at something real,” Gamboa said.
As Gamboa attends follow-up appointments at the Cleveland Clinic, where she takes breathing tests and undergoes chest X-rays to ensure her lungs are functioning well every three to four months, her aunt and mother have continued to sell the bracelets that helped make Maria’s life-saving surgery possible. So far, they have sold nearly 75,000, and with proceeds from the sales, Maria said her goal is at minimum to help patients cover treatment for respiratory infections.
“You can imagine how expensive this oxygen is,” she said, “but also how important it is.”