There are many different causes for kidney failure, as I have learned from talking to different people at dialysis. Over the last five-and-a-half years while doing dialysis, I have seen many people come and go. I am on dialysis due to the immunosuppression medicine I have been taking for nearly half of my life.
At 18, I received my first organ transplant — a liver. The immunosuppression medicine I needed to take so my body wouldn’t reject my liver transplant was too harsh for my original kidneys, which had already received many years of abuse from my cystic fibrosis medicines. In 2012, I received a kidney from my father five days after my 23rd birthday.
That kidney worked great until my lungs started to fail in 2016. At that time, it was deemed I would need new lungs and another kidney in order to meet the needs of my body. It was thought that receiving the lungs and kidney from the same donor would give me a better chance of surviving than if they came from different donors. Not long after receiving the organs, my second new kidney failed due to the medication I had to take for the transplanted lungs. At that time, I started dialysis hoping that my kidney would regain function, but unfortunately it hasn’t and that is why I am now waiting for my third kidney transplant.
Being on dialysis for so long has taught me how to juggle my life. Finding a job that was flexible with my dialysis schedule proved to be a real challenge. Fortunately, I was able to find a great job with a great boss who understands my predicament of scheduling work, dialysis, and appointments.
My dialysis center was able to work with me and get me the first time slot of the day. Beginning dialysis at 6 a.m. and finishing by 10 a.m. allows me to make it to work and appointments by noon. After dialysis, I normally go home and eat breakfast, and try to rest a little bit before going to work.
While being active usually counterbalances any lethargic feelings, there are days when I am too drained and unable to make it to work. I’m extremely thankful for my boss and other coworkers for understanding when this occurs.
Over the years I have developed strong relationships with friends that understand all I have to do in my day-to-day life. This same group of friends has been with me for most of my life, so they have seen me through my best days and my worst days. One example is when all my friends surprised me in my front yard when I got home from my liver transplant after being gone for three months. Another example is when that same group of friends made the three-hour drive to the University of Alabama Birmingham (UAB) to visit me while I was waiting for my double-lung and kidney transplants, and did the same drive to UAB to visit while I was recovering from the transplants. I wasn’t able to speak during their first trip because I was on extracorporeal membrane oxygenation (ECMO) and also had a tube in from my tracheotomy.
Even though dialysis has been a big part of my life over the last five-and-a-half years, I still try to live my life to the fullest. Every year, I travel with a friend that I met in college while working for the Auburn University football team to different baseball stadiums in hopes of making it to every single Major League Baseball stadium. We do this by scheduling the trips around my dialysis treatments so I don’t miss any treatments.
Not being able to have a full-time job has made it difficult to support myself, but fortunately my family has always been there for me. My parents made it possible for me to live on my own while away at college. Although I have had many hospitalizations, my family and the team at Emory University Hospital always make these hospitalizations pleasant.
While waiting for my kidney transplant, I have learned that staying active and keeping a positive attitude have allowed me to continue to live my life while waiting for a transplant. I do this by going to the gym regularly and doing other activities such as going to Atlanta Braves baseball games and Auburn University football games. During this waiting period, I took an online coding course through Georgia Tech that took six months to complete. I did this because it allowed me to work around my dialysis and other appointments. This was important because it kept my mind busy, instead of doing nothing while waiting for my next appointment during the kidney transplant evaluation process. Dialysis doesn’t prohibit you from traveling either. All you have to do is reach out to your dialysis social worker and they will help you find the closest dialysis center to your destination. Some cruise ships even provide dialysis.
Having been through several prior transplants, the anticipation and wait can be very discouraging. Especially when you have had many false starts from learning that the organ is not viable, you tend to develop a nonchalant attitude towards the transplant process. Fortunately, I have learned that the anticipation is worth it in the end.
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