Working with Chronic Kidney Disease

Periodically, I get approached by others to write a guest blog.  I think this piece, written by Mariana Ashley, is really valuable.  I hope you do, too.

I’ve known my friend Phil for almost seven years. When I first met him, I remember thinking he was such a walking art student cliché with his messy hair, five o’clock shadow, and the cigarette that always seemed to be hanging between his lips. He studied photography, but I would cruelly joke that all he took pictures of was the ceiling above his bed. Phil always seemed to be between naps, and when he dropped out of school in his sophomore year, everyone just assumed it was because he was lazy. We were wrong. Phil had been diagnosed with chronic kidney disease, a condition that affects the kidneys’ ability to filter the blood and remove waste from the body.

Although I knew him well and knew how seriously he took his passion for photography, I had no idea that he was sick. He says he didn’t either at first. Although he’d been born with only one kidney, his doctors didn’t believe he’d have to worry about kidney failure for some time. After all, Phil was just shy of twenty years old. But chronic kidney disease has a “silent” phase, where people who are developing the disease do not initially experience any symptoms. As Phil’s condition was worsening, he began losing weight, had no appetite and couldn’t concentrate. Even though I’d always assumed Phil spent a lot of time sleeping, he was actually unable to sleep and would just spend hours in bed feeling exhausted and literally sick to his stomach. A routine doctor’s visit revealed that Phil had high blood pressure and chronic kidney disease. Phil was told to change his diet, exercise regularly and quit smoking, which Phil admits was the second hardest thing he’s ever had to do. The hardest thing was accepting that his only kidney was going into failure.  He would need to undergo dialysis or a kidney transplant to stay alive.

Kidney dialysis, or hemodialysis involves having a machine that works as an artificial kidney. You’re hooked up by a needle, and your blood is circulated into the machine that works as a filter for your blood and performs other necessary functions before returning to your body. Dialysis requires not only money, but also time, as it is usually done a few times a week for about four or five hours depending on the severity of your condition. At the age of twenty-one, which many of us consider a milestone of adulthood, Phil began undergoing hemodialysis. After a few months, Phil returned to school, taking several classes online and building his schedule around dialysis. As graduation approached, however, Phil worried about how he would be able to work a full-time job while going to dialysis. He worried about it so much that he started smoking again.

Finding a well-paying, fulfilling job is challenging for any artist, but with a chronic illness it can seem impossible. Phil was offered gigs at weddings and parties, which wasn’t enough to live on. Furthermore, dialysis is costly. Although his parents’ insurance covered most of it, Phil knew that he couldn’t remain on their plan forever. He’d need a job that either had health benefits or paid well enough so that he could cover his hospital bills himself. At the time, I thought Phil was going through the same post-graduation job search struggles as everyone else. When I’d come across job postings that I thought were perfect for him, I was confused by his aversion to apply for anything that required travel or inflexible hours. He really wanted to give up, but some of the other dialysis patients that he saw regularly had full-time jobs and lived full lives. It took Phil a while to realize that he could live a full life, too.

Phil was offered the opportunity to shoot pictures for a hospital fund raiser, which led to more opportunities, which eventually led to a full-time photography job with a local magazine. Phil gets to make his own hours and when he does travel, he either schedules his dialysis ahead of time or makes appointments in other cities. When he did finally tell me about his chronic illness, he wasn’t sad or defeated or even frightened by it. He says it’s extremely difficult, but feels blessed and optimistic. When I apologized for assuming he was lazy back in college he confessed that he actually was lazy, and that his lifestyle and habits contributed to the disease. “But that’s not who I am anymore,” he tells me. “In some ways, living with [chronic kidney disease] has forced me to manage my life and live it to the fullest.”

Mariana Ashley is a freelance writer who particularly enjoys writing about online colleges. She loves receiving reader feedback, which can be directed to mariana.ashley031 @gmail.com.