By Haley Newkirk, National Kidney Foundation Kidney Advocacy Committee Advocate

I made it through my freshman year of high school before things went sideways. I grew up a healthy kid, with the usual slew of ear infections, strep throat, and the occasional flu. I’d been battling what seemed like a drawn-out cold for a few weeks before heading into urgent care with abdominal pain. My first blood pressure reading of 200/130 stunned the nurses, who, after two machines and a manual reading to confirm, rushed me to Children’s Hospital of Colorado with acute kidney failure.

I immediately went on dialysis, meekly swallowing dozens of pills and choking down a bland kidney-friendly diet of Pop Tarts and plain hamburger patties. I did my best to keep playing soccer, spending time with friends, and attending as much school as I could, supported by my incredible family, medical team, and caring community.

Even though we never figured out what caused my kidneys to fail, six months later, I received a life-giving kidney transplant, affectionately known as “Stan”. In the nearly 10 years since that day, I’ve made the transition from dependent, sick kid to confident, reasonably competent adult, just like my peers – with a few more doctors and medications.

Today, kidney disease is just another part of who I am. A few years ago, I attended the Kidney Summit in Washington, D.C., with the National Kidney Foundation (NKF). For the first time, I interacted with patients and people affected by chronic kidney disease, and I got the chance to tell my story to policy makers and help bring about positive change. I learned that as a patient, I am uniquely able to support efforts to improve early detection, support living donation, and conduct life-saving research.

When you’re facing kidney disease as a child or their parent, it can be hard to see how it will all play out. While everyone’s situation is different, here are a few things I’ve learned between then and now that helped me along the way:

1. Take charge of your care. Ask a LOT of questions! My dad kept a notebook with long lists of questions that he would tick off each time a doctor came in the room. If you’re a parent, model this for your child and help them take over as they get older. I went appointments alone, coordinated my care with multiple doctors, and handled billing and insurance myself early on, which made the transition to independence much easier.

2. Treat your child like an active participant. Do your best not to talk down to your child and encourage their care team to do the same. Involve them in decision making whenever possible. As a teenager, I was so frustrated when people talked about me as if I were not there or called me “kiddo”. Kids of all ages are very perceptive; they know something is wrong, and they want to know something about what’s happening to them.

3. Document the highs and lows – especially the lows. My mom’s friend helped me start a blog during my first week at the hospital. It was a great way to keep track of what was happening and to share that with others. Today, it helps me remember everything I’ve been through. Whenever you’re facing a new challenge, health-related or not, you can look back and realize how strong you are and how far you’ve come.

4. Connect with others. You can learn so much from people who’ve dealt with similar challenges, and they can relate to your experiences in ways your loved ones and friends may not be able to, as hard as they try. In that vein, kids—talk to your friends about what’s going on with you, if you can. They don’t have any idea what to say or do, either!

Most importantly, remember that kidney disease is just another event in life. You’re on this road for the long haul, and you will always find ways to keep going, even when you think you can’t.

Learn more from the National Kidney Foundation about Advocacy in Action.  Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.