en years after the Yugoslavian civil war ended in 1995, two brothers eagerly reserved their airline tickets to travel across the Atlantic Ocean back to their hometown of Trnopolje, a northern city in what is now Bosnia. The two, joined by Adis’s wife, visited the spectacular coastline of Croatia, encountered “GIANT” grasshoppers in buildings, and shared many laughs together with family and childhood friends. It was the single trip of that magnitude that the siblings would experience and Azedin’s fondest memory with his only brother before a health crisis would turn their lives upside down.
A number of years later, Adis was diagnosed with lupus, a chronic autoimmune disease that occurs when one’s immune system attacks its own tissues and organs. Lupus is capable of damaging any part of the body including the joints, skin, blood cells, and/or vital organs (i.e. kidneys, lungs, heart, and brain). While the definitive cause of lupus is unknown, genetics combined with certain environmental factors can trigger the onset of lupus. Currently, no cure for lupus exists.
According to the Mayo Clinic’s website, “kidney failure is one of the leading causes of death among people with lupus.” In Adis’s case, the red blood cells destroyed his white blood cells, hindering his kidneys from processing correctly. Sadly, his kidney function slowly declined. At first, he treated the disorder with natural remedies. He drank teas from overseas, used herbs and lotions, but to no avail. His condition worsened and kidney function rapidly deteriorated. He endured six months of chemotherapy and five months into dialysis, it became clear to the family that they had one last resort at prolonging Adis’s life: a kidney transplant. While a placement on the waiting list for a kidney might seem promising at first, it is not so simple.
“The list is massive,” explains Azedin. “It’s a nationwide list so you can just imagine how big this list is. It’s a very dreadful thing to hear: ‘You’re getting placed on the list…’” In Azedin’s words, they are essentially “picking a needle in a haystack. Hopefully, it’s you.” At that rate, his eldest brother’s future looked dim.
Azedin wasn’t familiar with lupus until he learned of his brother’s diagnosis. When he discovered that Adis needed a transplant, he didn’t waste any time researching the two subjects closely. He was astonished at the number of patients affected by lupus and their need for a kidney transplant. Not to mention the great lengths they go through to make their cause known to the public. Some advertise their urgent requests on billboards and others post signs on their vehicles. Additional families publicize their needs via the worldwide web through craigslist and YouTube. Azedin realized very quickly how time was of the essence. His only brother’s life was at stake. If he could help it, he had to do something about it and as soon as possible.
In April 2013, Azedin contacted his brother’s medical coordinator, Cory, at Legacy Emanuel Hospital and scheduled a meeting to see her. Upon arrival, he filled out a preliminary questionnaire used to gauge a prospective donor’s intentions for donating organ(s). After filling out the survey, Azedin and Cory discussed organ transplants in detail. She explained that human blood consists of six proteins. At least three of the six proteins must match to even begin consideration as a living donor. She continued. Blood samples from siblings are usually very similar because of the DNA that is passed on to them from the same biological parents. Cory stated that the likelihood of Azedin being a blood match with Adis was more probable as opposed to a parent or other relative.
Azedin then steered the conversation in a different direction. He inquired about organs from deceased donors. He learned that the average lifespan of a kidney from such a donor is approximately ten years, more or less. The life expectancy of an individual receiving a kidney from a live donor at least doubles that, if not, triples. Moreover, waiting for a possible match from an anonymous donor could potentially be too late. Azedin understood that if he was a willing donor and his blood type matched his brother’s, they could put the terrifying ordeal behind them.
Azedin is four years younger than Adis and the two men share the same biological parents. Though Azedin’s father was intentional about becoming a possible donor, Azedin’s young age and the likelihood that his body would recuperate more quickly encouraged him to pursue a potential solution. He requested to proceed with testing immediately.
Later that evening, Azedin returned home. While eating dinner, he told his parents about his appointment with Cory earlier that afternoon. His father was somewhat disappointed that Azedin went in before he had the opportunity to. And his mother was distressed. She was already struggling with the risk of losing one son and was unprepared to suffer the loss of both sons should complications occur or the procedure fail altogether. It was a difficult and emotional battle for her.
Their mother wasn’t the only one torn by Azedin’s sudden decision. Azedin was newly engaged to his fiancée of four months when they found out about the severity of Adis’s condition. He remembers Adna being at odds over the matter. It was a tough decision, but she didn’t have the heart to dissuade Azedin from moving forward knowing she would do the same for her older brother if his life was in peril. Azedin’s mind was firmly set and nobody could convince him otherwise, but Adna’s support made it that much easier for him to continue.
‘Why do you want to donate?’ was a common question that bothered Azedin. A Bosnian native, Azedin plainly explains his cultural upbringing. “He’s my brother. Why shouldn’t I? I was taught that your family is your blood. And whether you like it or not, that’s your family.” It was the logical thing to do and a simple judgment for him to make. Either he would allow his brother to die or he would give Adis what he needed to help him survive.
While saving his brother’s life was of utmost importance to Azedin, another factor helped solidify his decision. If he was a successful donor, Azedin’s name would be automatically placed at the top of the national waiting list should he ever need a kidney in the future.
Azedin visited the hospital on a regular basis for several weeks. In addition to physical exams and a mandatory consultation with a psychiatrist, he completed several different blood tests to establish if he was a match. After completing those essential tests, he had one conclusive hoop to jump through. Ironically, the last assessment he would need to fulfill before learning the absolute answer was a CT exam. The CT images would indicate whether or not Azedin had a kidney to spare.
His brother’s 31st birthday was soon approaching. Anxious to share hopeful news with Adis on his birthday, Azedin asked Cory to contact him as soon as possible. She succeeded in accelerating the results and called Azedin.
‘Hey, can you talk?’ asked Cory seriously on the other end. Azedin nervously laughed. “I remember the tone in her voice clear as day. My heart sunk,” he says. “I felt like something just didn’t go right.” Cory had advised him early on in the process to be sensible and guard his emotions should the outcome be negative and undesirable. He remembers being thrilled about the possibility of being the closest match for his brother. But her tone abruptly gave him the impression that he was about to receive heartbreaking information.
[…to be continued…]