For Enrique Delgado – a migrant from Venezuela living in Panama and diagnosed with multi-drug-resistant tuberculosis (MDR TB) - the psychological effects and the sense of isolation that result from the disease are more traumatic than the expenses associated with it, or even the threat to life. “I have to live in isolation in my own house, wearing a mask….” He lived in constant fear that he would pass on the illness to his wife and daughter and many times contemplated committing suicide.
Enjoying a New Life and Career in Panama
Following his migration to Panama, Enrique’s career took an upward turn and life was looking very promising. He was promoted to Regional Coordinator of Service at Sony’s Headquarters for Central American Operations. In this role, Enrique needed to travel two to three times a month to the Caribbean, Central American and Eastern American countries that made up his territory.
These frequent business trips demanded a lot from his body as the time difference would require his internal clock to adjust, the compressed timetable and high expectations would build up the stress level in his system, the hectic itineraries would have him up on his laptop way into the night – and require him to get up early.
But with his family close by, Enrique felt that he made the right decision to migrate and pursue the dream of a better life.
Travel Troubles
But starting in 2009, the dream became a surreal and extended nightmare for his family. He initially experienced increasingly nagging pains in his back, then unusually high perspiration at night. Normally quite athletic, he noticed that he was getting tired more easily. In a few months, he lost a considerable amount of weight. Then came the telltale cough. He was diagnosed with tuberculosis. Doctors suspected that he contracted the disease during one of his trips abroad.
The Delgados could not believe the diagnosis, as Enrique was reasonably fit. He enjoyed playing soccer, and baseball, and was learning tennis. He didn’t smoke and only drank socially. Still, they took comfort in the prognosis that it was treatable.
Multi-drug-resistant TB
Two rounds of treatment and numerous laboratory exams later, however, the diagnosis and prognosis changed. Due to the relapses of Enrique’s illness, doctors started suspecting something more than TB.
The couple started scouring the internet for similar cases, experts in this field, and medical institutions with better TB diagnostic and treatment facilities.
They ended up consulting doctors in Peru, who diagnosed Enrique’s ailment as multi-drug-resistant tuberculosis, or MDR TB. This type of TB has developed resistance to basic anti-TB medication and treatment due to several factors, including the improper use of antibiotics.
The High and Higher Costs of MDR TB
MDR TB treatment has a steep price tag. The couple estimated that the total cost of treatment would be around USD35,000 (or the equivalent of more than 18 months of Enrique’s salary).
Enrique was fortunate that his company (SONY) offered its employees generous benefits, which covered a large part of his treatment expenses. But other expenses weren’t covered, including having to stay in Peru for three to four months during the intensive MDR TB treatment.
Over and above health insurance benefits, his company lent its support in other ways. It allowed for a “shared workload” arrangement with other staff, flexible work hours, and eventually a “work-from-home” option. Because of these, financial burdens, although these were considerable, were not the biggest load on Enrique’s mind.
The emotional strain, exacerbated by the psychological effects of the drugs he was taking, took the most toll on Enrique. He was worried that his family would contract the disease. And his fear was confirmed as his one-year-old daughter Paola tested positive for tuberculosis.
“I was devastated,” said Enrique. “The guilt feelings were so deep... “ They prayed for their daughter to be spared – and for a miracle. After the baby’s initial diagnosis, the Delgados had more TB tests taken and the doctors couldn’t explain it, but all succeeding results were negative. They got their miracle.
On top of a persistent fear of contagion, the psychological side-effects of the drugs he was taking caused Enrique to be depressive, withdrawn and short-tempered. This created a heavy strain on his relationship with his wife. “It was not easy for her to handle my emotions,” Enrique says. “The relationship was very difficult –not only because of the separation, but the secondary, psychological effect of the medicines was very tough. You think like a zombie…. you almost have no feelings…. mentally, you feel so tired. This was one of the worst parts of this disease,” Enrique admits. Many times, feeling alone and isolated either at the hospital or within his own home, Enrique thought about ending his life.
Family Solidarity
The family evaluated whether Enrique should move to another house by himself to avoid contagion. “But at the end, we decided to take precautions instead – mask, proper ventilation, regular laboratory exams, etc – and fight the disease together. I was emotionally unstable. . . and a separation from my daughter and my wife would have been very painful,” he admits.
Treatment and Wholeness
Enrique underwent MDR treatment in Peru from 2012–2013, accompanied by his mother. To break out of the depressing mental trap, and the sense of isolation from his wife and daughter who were both in Panama, Enrique turned to music and meditation, and constantly reminded himself that he wanted to see his daughter grow up. “She was my engine,” he told us. He turned to his faith in God for strength and made a decision to be thankful in the midst of his trying circumstances.
After 24 months of treatment, all of Enrique’s tests for TB turned out negative. Doctors in Peru, Panama and Venezuela confirmed the results and approved the termination of his treatment due to the excellent results.
The “Benefits” of His TB
Enrique believes all he went through was not in vain and that something good has come out of this experience. “It was tough but it was a lesson because it changed me: I have a totally different view of life. It’s curious because when you’re healthy. . . . you think you’re always gonna be okay [and tend to take a lot of things for granted.] But after you’ve been lying in bed for many months, you start to appreciate life more. . . . every single thing, every single day – you are a lot more thankful to God,” he said.
Late in 2013, Enrique was invited to tell his story to the delegates of the 44th Union World Conference on Lung Health, held in Paris, France.
It did not take Enrique very long to decide. Two more realizations he had were: one needs to know as much as he can about one’s enemy – TB; and that he needs to give back somehow and help those who, as he did before, are locked in a deathly duel with TB – but unlike him, may not have as much resources to fight with. Attending and speaking at the conference allowed him to do both.
Under a workshop on “Collaboration Between Employers and Governments to Ensure Early TB Diagnosis for Migrant Workforces,” Enrique’s case was an example of a positive employee experience due to the existence of such a collaboration. IOM was a coordinator for this workshop and participated in several sessions on TB and migration at the conference.
Coming out of his experience, Enrique believes he has found his life purpose. “Everyone has a purpose in life. . . . God has mysterious ways of letting us know what that purpose is. Mine is to give all the support I can give to the Stop TB Partnership and help bring down millions of TB cases to zero,” he said during his presentation.
The Worst Is Over; The Best Yet to Come
After a four-year battle with the number two most fatal contagious disease in the world, Enrique is a picture of a survivor and who has gone from being a recipient to giver, and wants to impart hope to other people, migrants and families under the dark pall of tuberculosis.
“Right now I’m TB-free, thank God. . . My last exam was perfect. . . my family is okay. . . my little girl is okay,” Enrique reports. “But I have to take care of my lifestyle. I don’t smoke (I used to smoke years ago), I don’t drink (only socially). . . . but my liver was affected by all the pills I took… I have to take care of my liver,” he explains. He is getting back into sports and rebuilding his body’s resistance.
He has come back to work and has received a promotion. He now manages SONY’s Call Center on top of being his region’s Service Coordinator. There is life after TB. And it can be even better.
