[…continued from Part I…]
en-year-old Adis and his then six-year-old -brother, Azedin, were separated from their father as the boys and their mother endured six terrifying months in a concentration camp in Bosnia. The trio miraculously escaped flying bullets, falling mortars, and exploding grenades while desperately running through a forest in hiding. When the broken family finally arrived in Slovenia as refugees, they heard no word on the condition of their father, of his whereabouts, or if he was even alive. And they didn’t for the next two years. One morning in 1994, he unexpectedly appeared at their refugee camp as his heartsick family blinked at him beyond disbelief. After their emotional reunion, returning to Bosnia was clearly not an option. They sought help from and were reunited with a relative who settled in the upper northwest of the U.S. just the year before after also fleeing from their war-stricken country. The traumatic experiences would be enough to last a lifetime, but sadly, Adis was forced to contend for his life once more.
Ten years later, Adis and his young wife returned to their home in the northwest after vacationing together on the East Coast. He noticed a small rash with little red speckles on both of his cheeks. After the dermatologist examined the area of interest, Adis was told it was a possible outbreak of a skin condition called rosacea. Rosacea seemed innocuous at first even when he learned that his blood test results were slightly irregular. Lab tests revealed proteins not normally found in urine samples; however, because the figures were still within normal range, the new developments did not seem critical – at least not yet.
The first three years were calm with the rash being the main sign of any possible health issue, but another dip in Adis’s health put him on a winding downward path. Eventually, doctors discovered that Adis’s immune system was damaging his kidneys. Lymphocytes, or white blood cells, normally circulate through the bloodstream searching for foreign contaminants that help fight against illnesses, for example, the common cold or flu. Instead, his body determined his kidneys were a foreign substance. The lymphocytes erroneously attached themselves to his kidneys, aggravating them and hindering them from functioning properly. While this battle was occurring in his body, signs and symptoms were not yet manifested outwardly. “I was feeling fine and I would be feeling fine until my kidneys got to a point where I didn’t feel fine anymore. By then, it was almost too late,” he says.
After probing into his health more closely, doctors performed two biopsies: they took a sample of his skin and one from his kidney. Based on the activity present in his body and the findings from the biopsies, medical professionals established he had signs consistent with those of lupus patients and diagnosed him with systemic lupus erythematosus (SLE).
The kidney biopsy revealed his kidneys were only 45% functional. While the doctors advised he may need to undergo dialysis should his kidneys continue to deteriorate, Adis was somewhat in denial while clinging to the hope that his health would improve before it got worse. Up until that point, Adis had been drinking herbal teas and utilizing natural anti-inflammatory medicines. But as his health waned, he was prescribed a variety of different medicines in an attempt to keep his body in balance. His kidney function continued to lessen, down to 35% and then 30%. He rapidly began to show signs of disease and began to experience symptoms. His body retained water to the point of pitting. (With his finger he would press on his skin and a temporary impression remained after removing his finger from its surface). He frequently felt hunger pains knowing if he consumed any amount of food, it would be just like feeding poison to his body. The bathroom was his loyal companion as he was constantly nauseous, sometimes vomiting ten times a day, if not more.
The medicine eventually was of no use. Adis was not improving and options were few. Doctors recommended a chemotherapy treatment on a monthly basis for six months in 2011. The treatment would circulate through the kidneys and “burn off all the white cells that are on the kidneys to relieve them” of the constant stress. Then they would be able to operate to some degree without the lymphocytes hoarding the kidneys. Since the lymphocytes were very aggressive, they scarred the kidney tissue, essentially drying out the areas affected (similar to the likes of a prune), hindering filtration and normal function.
Adis’s condition improved during the course of the treatment, but after six months of chemotherapy, lupus was very active in his system again. He was unable to take medicine or treat his symptoms after completing chemotherapy so that his body would have time to recover.
With decreased kidney function, he had changes in urination, an alkaline or metallic taste in his mouth, ammonia breath, chills, shortness of breath, intense cramps, trouble focusing, and extreme fatigue. Edema worsened and frequent vomiting was brutal. He consistently felt tired and even though he slept very long hours at night, he would wake up as if he had never slept at all.
Through it all, his daily routine didn’t miss a beat. Though on light duty, Adis continued overseeing a port management company he worked for full time while keeping all of his medical appointments. He was also the president of a Bosnian non-profit organization in his community and was dedicated to serving them unwaveringly. His faith in God grounded his emotions. Laughter and a positive mindset helped him look beyond his circumstances. He maintained his active lifestyle playing sports, meeting with friends, joining them on spontaneous trips, and riding his motorcycle. Riding his motorcycle helped him forget about everything and cleared his mind. “I basically did not let lupus stop me from doing anything. I just kept going to keep my mind from thinking about how sick I was.” Adis kept moving and kept smiling.
A second biopsy of his kidney was later completed showing his kidney function had drastically decreased to 15% – both kidneys were equally affected and his body was in serious distress. Dialysis was his last resort or he would surely die. Without his kidneys normally filtering his blood of the daily toxins, Adis’s potassium levels would increase to dangerous levels. It was only a matter of time before he would go into cardiac arrest. He remembers times when he would be contacted at home by a nurse and notified to report to the nearest emergency room immediately because his potassium levels were dangerously high. His body was no match for the complications the doctors now referred to as lupus nephritis.
Finally, Adis had had enough. His symptoms had become very unbearable and had no other choice but to agree to dialysis. Once he started dialysis in early 2013, he was placed on the national waiting list in hopes of receiving a kidney from an anonymous donor.
To put Adis’s grave situation into perspective, the National Kidney Foundation’s website states that every twenty minutes, a patient is added to the kidney transplant list; almost 2,500 patients are added to the list every month. Fourteen people die every day while waiting for a kidney transplant. These figures are not just numbers, but souls. Death was knocking at Adis’s door…
[…to be continued…]
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…]
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