Posts Tagged autoimmune disorder
[…continued from Part II…]
zedin was sitting at his work desk when Cory called on the 27th of May last spring. Gripping his phone firmly, he anxiously waited for Cory to tell him the final results of his testing.
He would not only need three of the six proteins in his blood to match Adis’s, but he must have two fully operating kidneys in order to donate one. Some people are born with a single kidney (termed renal agenesis) and others have kidney dysplasia, a condition where two kidneys are present but only one functions correctly. If the CT showed that Azedin did not have two working kidneys or the labs revealed that only one was healthy, Adis would remain on the national waiting list indefinitely. Time was running short.
‘I just want to let you know I have all your results back and…’ Cory paused. Azedin’s anxiety grew with every passing moment. “…And?” he thought impatiently. He would be heartbroken if Cory didn’t deliver promising news. “…You’re a match!” There was silence on his end of the telephone line. Azedin couldn’t believe what he heard. “We’re a go!” she exclaimed as she excitedly began to list the available dates for surgery.
Out of the six proteins in Azedin’s blood, all six were a complete match; typical of what is found in blood samples between twins. Kidney function tests and the final CT exam proved Azedin had a life-saving kidney to donate to his brother. He kept the results private as he and Adna planned Adis’s surprise birthday gift, the gift of a lifetime, with just two days to spare.
The evening of the gathering, Adis was in his living room telling jokes and laughing with family members when Azedin approached him with his surprise birthday gift. Azedin created a personal coupon book to break the news to his brother and the rest of the family. The first coupon was a voucher for $150 toward a new motorcycle jacket of his brother’s choice. The second coupon was cardstock cut into the shape of a kidney and its anatomical parts sketched onto its surface. The final coupon was a “Life Certificate” Azedin designed where he listed two surgery dates for Adis to choose from.
You can watch Adis’s reaction here.
The family was overwhelmed by the news. Adis’s wife and mother were both overcome by emotion. At first, Adis was confused and surprised, then sad. He tried to be happy, but he could hardly conceal his mixed emotions. Adis was aware that Azedin had been inquiring about the process of organ donation, but he didn’t know his brother was seriously exploring the option to become a donor himself. And Adis didn’t question Azedin about any involvement in the matter, concerned that he might instigate unintentional pressure upon his sibling. In fact, Adis preferred that his family not become implicated in the donor process, fearing he could never repay them should any of his loved ones ever need a kidney transplant in the future. Once Adis came to terms with the results, he was looking forward to better days.
While Adis was willing to continue dialysis for as long as necessary, he knew it was only a temporary solution to an ongoing problem. The first month Adis was on peritoneal dialysis (CAPD), he was manually filtering his blood four times a day, carrying small bags of cleaning solution with him everywhere he went. It was inconvenient and sanitation was extremely imperative to avoid possible peritoneal infection. Then he was switched to a different dialysis treatment (APD) where his blood was filtered and cleansed by a cycler while he slept at night only. He continued this method for four more months. While it is an efficient treatment, undergoing dialysis on a daily basis can negatively impact the body and shorten one’s life span. A kidney transplant was the ideal solution to prolonging his life.
The last night before surgery, Adis was feeling anxious, but continued to think optimistically. Unfortunately, his worst nightmare occurred and something went terribly wrong. He was awakened in the middle of the night when he sensed his clothes and bed sheets were drenched! After eliminating a few possible reasons as to why his garments could be wet, he frantically jumped out of bed to find that the tube that connected to his port had somehow detached and fluid gushed out. He had been warned by specialists to take extreme care at night when sleeping to avert possible contamination, essentially delaying surgery. He immediately contacted his home health nurse who arrived around three o’clock in the morning to assist Adis at home. After phone calls to doctors were made and extra precautions were taken to avoid infection, the nurse left. Adis was unable to fall asleep again as he stared at the clock, waiting for any signs or symptoms of infection to occur after the untimely ordeal. Hours passed sluggishly until morning finally arrived and Adis received word that he was cleared to proceed with surgery.
Azedin and Adis were scheduled for their operations respectively on the morning of July 8th. Their parents were nervous. They looked on at their adult children as they were wheeled into the surgery prep room, frightened by thoughts of anything that could go awry. Azedin recalls being more than ready for the procedure, trusting his life into God’s hands. A little apprehensive at first as to what the future would hold for his younger brother, Adis made a conscious effort to resume meditating on positive thoughts. In the surgical prep room, Azedin’s fiancée was standing nearby while the couple chatted with Adis and his wife. The anesthesiologist interrupted their conversation with an announcement directed at Azedin: “Here comes the good stuff!” Azedin looked to his right where his older brother lay on a stretcher wearing a surgical cap as he was undergoing preparations for surgery also. He continued to scan the space when he exchanged glances with his sister in law. Ultimately, he rested his eyes on his soon to be wife and managed to utter his final observation: “You guys are all dizzy right now.” Those were his last words to his family before falling into a deep sleep.
LIVE! video taken from the day of surgey can be viewed here.
A large incision was made on the right side of Azedin’s abdominal cavity where surgeons removed his right kidney. Next, they cleaned the kidney and flushed a water-like solution through its parts before placing it in an ice chest. Adis was in the next operating room already sedated and waiting for his life-saving organ to be transplanted. Though Azedin’s procedure was completed in just over sixty minutes, the entire process lasted about four hours.
Adis’s body embraced the new kidney immediately. Abnormally elevated creatinine levels plummeted drastically and continued to do so until they finally returned to normal the next evening following surgery. His swelling was gone and for the very first time in many years, he felt great. When Azedin learned how well his brother was responding after surgery, he was very grateful. “I don’t really show my emotions very much, but there’s just times where you can’t hold yourself back; whether you want to or however strong you want to be, you just can’t be. Emotions run.”
Azedin was released two days after surgery and within a week, he was walking around comfortably. Three weeks after surgery, he was already riding a bike again. He doesn’t feel any different than before nor does he sense that something is missing on the inside. Other than the large scar that wraps around his right side as a daily reminder, his everyday life continues unaffected by the procedure. He is still as active as before, enjoying sports like snowboarding, football, soccer, and basketball. For safety measures, Azedin undergoes an annual physical and completes lab tests to ensure his internal processes are balanced and functioning normally.
As for Adis, the first three months after completing surgery, he went in for checkups three times a week to ensure his body was not rejecting the kidney. His visits gradually decreased to a checkup once a month until his one year anniversary. Adis takes two pills in the morning that help suppress the white blood cells, preventing lupus from potentially returning; a significant change from the numerous remedies and prescription bottles he was once accustomed to. When he reflects on photos of himself captured on several different occasions in the past, he vividly recalls how despite his smile, he was feeling miserable during that little glimpse of time. And yet he would often remember that it could always be worse.
On Azedin’s wedding day in November of last year, Adis stood by his brother as his best man. During the reception, Adis shared a spontaneous, emotional speech that moved over three hundred guests to tears in that reception hall. A slideshow organized by Adis followed shortly after. As Azedin viewed the pictures next to his bride, the memories he shared with his brother as they grew older together were even more meaningful. Realizing that his brother could have possibly not survived to witness his wedding day or have the opportunity to create more memories together gripped his heart. “I realized how quickly things can disappear in life. Something that’s come up can take you down so quickly. Adis was fine and then suddenly lupus just took over his body. It opened my eyes to appreciate what I have and I’m beyond thankful.”
The overall experience has made Azedin sensitive to those struggling with lupus and other illnesses as well as compelled him to encourage others to become organ donors. He became involved in an online group called the Living Kidney Donor Network where he shared a little bit about his story. In fact, his story even motivated a woman he doesn’t know to become an anonymous living donor. He hopes to raise more awareness about lupus and inform others that life is still as full and rewarding with a single kidney.
As for the gift that Azedin gave Adis, the gift of life leaves Adis at a loss for words. “Thanking somebody for something like this is almost silly. How do you repay somebody for saving your life?” With Azedin’s healthy kidney intact, Adis has the chance to live at least twenty years or more. “We all have to go some day,” Adis reasons. “Some go sooner. Some go later. Visit those who are sick. Put yourself in their shoes. You may never fully understand, but it might give you a little different perspective on life. Do the things you love. Don’t stress over insignificant matters. Have fun and laugh. Find peace and find faith. Appreciate life.”
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…]