Wednesday, July 19, 2017

JIMMY AND HIS JOURNEY WITH KIDNEY DISEASE

Jimmy is a young man in his twenties and is a passionate rock musician. Like every other rock band, Jimmy and his three other bandmates believe they will one day become the next Rolling Stones. They have been playing together for the past many years, in fact right out of high school. Jimmy remembers the exact time when he and his friends decided to come together to form their band.

For Jimmy though, he has had to deal with a greater struggle- chronic kidney disease and his journey through transplantation. He remembers getting fevers and sore throat very frequently as a young child. His pediatrician at that time had told his mother that he had strep throat on a number of occasions. As he grew, these frequent infections ultimately caused his kidneys to fail and he and his family were faced with him needing to go on dialysis. As a budding teenager with higher ambitions, a life with chronic kidney disease and dialysis can be extremely challenging. After talking to his physicians, his parents decided to get tested to become potential kidney donors. They were referred to their downtown university transplant program where Jimmy and his parents went through a battery of tests. Jimmy’s mother turned out to be the best match for him. A month later, Jimmy received his mom’s left kidney. They both did well and were back home in 5 days.

Jimmy was put on multiple medications in order to prevent rejection of his mom’s kidney. One of these medications is prednisone, which is a steroid. Steroids have been in use for many decades for the purposes of treatment and prevention of rejection after organ transplantation. They are powerful and effective, but have a lot of side effects. In a few months, Jimmy started to see those side effects. The most distressing ones for him was the changes he was seeing in his body and the way he had started to look.  He had gained a lot of weight, his face started to look bloated and round and he put on extra weight around his chest and waist area. These changes started to distress Jimmy but based on what his doctors were telling him, he could not really do much as he was on the lowest possible dose of the steroid and he risked rejecting his kidney if they lowered the dose any further.

One other change was that Jimmy was getting moodier, which is another side effect of the steroid. There were days when he felt depressed and lonely and couldn’t really verbalize what he was going through to anyone. His parents took him to a psychiatrist, which did help, but not enough. Jimmy’s response to all these changes was that he started to skip his medications and very soon was in the acute rejection of the kidney. He had to be admitted to the hospital and after a biopsy of his kidney transplant, was given strong medications to fight the rejection. After a few days, he returned home, but unfortunately, the damage had been done. The kidney never really recovered and Jimmy had to be put on dialysis.

By now Jimmy was ready to graduate high school, which he did. Despite the disappointment of losing his kidney, he soldiered on and started his college career. He and his friends would meet on weekends to perform at various locations in the city. Jimmy had to be very careful with his diet and fluid intake since he did not have a fully functioning kidney. He needed thrice weekly dialysis treatments to keep him alive. He had now started seeing a different kidney specialist since he was now an adult. His new doctor suggested to him and his parents to re-consider another kidney transplant. After his initial reluctance, he was evaluated for another kidney transplant at the nearby transplant center. The physicians at the transplant center were initially reluctant to list him, as they deemed him “non-compliant” since he had voluntarily stopped taking his medications the first time around and caused his kidney to fail. He had to meet the psychologist and the social worker and show that he had learnt now that he had to be compliant with his treatment in order to be listed. Transplant physicians are by nature very wary of the issue of non-compliance. As Jimmy found out the hard way, strict adherence to the treatment regimen life-long is a must for proper functioning of a transplant. Moreover, Jimmy had now formed certain antibodies, proteins that can attack any new transplant and cause it to fail. After a prolonged process, Jimmy was finally accepted and listed for a deceased donor kidney transplant. In about three years, Jimmy received that phone call in the middle of the night to report to the hospital right away, as there was a potential kidney that had become available for him. A few hours later, Jimmy had a brand new kidney, which worked right away and got him off dialysis.

Today, approximately five years later, Jimmy is doing well and has had no rejection episodes with his new kidney. He continues to perform with his band and hopes to start a family of his own very soon.

The issue of non-compliance is a serious one, especially in teenagers. They are by far more prone to risky behaviors which could be life threatening at times. In Jimmy’s case, he had to go through a period of uncertainty and inconvenience before he could a new lase on life. He now goes around and speaks to people about his experiences and hopes that no-one has to lose their transplants to risky teenage behavior.

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