A Teenage Son's Perspective on Kidney Disease
Previously Traci shared her perspective as a mother to a child with pediatric kidney disease. Her teenage son, Tanner, offers below how his life is both different from and similar to others his age because of his condition.
This is my life. I don’t know any other way. My parents have always tried to make my life just like everyone else's life. But, I have different things that I have to do besides being a teenager. I have to wake up at 7:35 a.m. every day to take medicine. I never get a day off.
Now that I’m a teenager, I set my own alarms and take medicine on my own. If I remember to take the medicine into my bedroom at night, I don’t have to get out of bed to take it. Otherwise I need to go get it, and then return to bed. I also text mom and dad to let them know I took it. If I don’t, they will get up to check.
I can eat breakfast an hour before or after my morning medicine. On vacation and during the summer, it’s not a big deal. But during the school year, I have to get up and eat before 6:30 a.m. to avoid waiting to eat until second period. I also take medicine three other times throughout the day. It’s just part of my routine. I have alarms set to remind me of those, too. We have medicine containers filled, so that we never have to wonder whether or not I’ve taken my medicine.
Probably the biggest thing that sets me apart from other kids my age is what I drink. Soda and sports drinks are not really good for anyone but, medically, they are not beverages which I’m supposed to drink. I also limit the juices that I drink. Having orange juice or apple juice is an occasional treat for me.
The best beverage I can drink for my body is water – and a lot of it. My kidney functions best when I drink at least 3 liter of water per day. Try it. Three liters per day is twice what is recommended for the typical person. But my body is accustomed to so much water, so I can usually manage to drink that much each day.
If I don’t consistently drink that much every day, I risk a kidney rejection. Rejection is when the body recognizes the foreign organ and amps up my immune system to fight it. Rejection doesn’t mean that I’m going to lose my kidney; it just means that the cells need to be reorganized and put back in their place.
I’ve had rejection a few times, and luckily it’s never been severe. But each time a rejection occurs, I must go to the Children’s Hospital of Pittsburgh of UPMC for a few days of treatments. I don’t ever want to be in the hospital. Who does? At least the Children’s Hospital of Pittsburgh knows us well, and everyone there is super nice.
After I’m treated for rejection, I can’t play sports for almost two weeks. That’s because a future biopsy is required, and with its chance of bleeding, all of my activity needs to be restricted during that time-frame. I don’t like this, but there is nothing I can do about it. So I deal with it.
In many ways, I’m a regular teenager. I play on my high school soccer and golf teams. I love to race go-karts, snowboard and have become a snowboard instructor at the local ski resort. But in other ways, I am not. To play these sports, I have specialized equipment that I have to wear that protects my kidney from injury. It’s just part of who I am.
Today I am a teenager who strives to get my driver’s license, go to college, and live the rest of my life.
Learn more from the National Kidney Foundation about Advocacy in Action.