4 Lessons on Dealing with Teenage Kidney Disease

By Haley Newkirk, National Kidney Foundation Kidney Advocacy Committee Advocate

3-21_Kidney_Month_-_Haley_Newkirk1I 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.

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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2 Responses to 4 Lessons on Dealing with Teenage Kidney Disease

  1. David Leong says:

    Thanks for the kind & timely sharing & prompt contribution article!

    Ever since I have been on the journey of hemodialysis (HD) treatment or therapy I treat & take my clinic or centre as my 2nd home simply because I have to attend my HD 3 times weekly & each session last for 4 standard solid hours. To & fro I need about 6 to 7 hours all in all for preparation waiting inclusive bad weather etc. Therefore I like & love to express my personal genuine stories too as this is my 2nd home after all. Hospital is my 3rd home as I had been taken care by local hospital ever since too.

    I always believe & trust that individual lifelong learning in term of educational culture & value is essence or key of SELF-AWARENESS along any struggling journey on earth! As such i always like & love to share & contribute whatever whenever or wherever possible according to my personal knowledge & experiences of what I have been going through genuinely. I had signed my HOTA or Organ Transplant Unit during my adult period of times both in Malaysia & Singapore. But since 2014 I could not donate my kidneys as my both kidney completely collapsed.

    I was an usual blood donation since young age as well as a bone-morrow donor once which was very successful & it had been 21 years already for an one & half year old boy in USA. It was done within 48 hours of emergency transplant procedure. The first fly-over procedure of oversea transplant between Singapore & USA! I was about 50 years old then.

    Due to my hearing impair I like & love to write up & express my inner voice solely for self-reflection & self-care & self-independent purpose as well as for the benefit of my family & my next generation & or relatives & closer friends who are interested or keen about my experiences. I am 70 a retiree & today I am living in Singapore & doing my HD in NKF Singapore & by now for about 3 years & 5 months already. I am quite satisfied & happy about their services together with Singapore General Hospital (SGH) as caregivers & enjoy my living life-journey too. I am so glad that my family & relatives are strongly behind me too. Smile With Cheers Always~~~

  2. Timothy Opiela says:

    My daughter has a congenital solitary functioning kidney. She has also had hydronephrosis and a urinary tract infection. There have been about 15 research articles in top medical journals over the last 10 years about the increased risk of developing renal injury and kidney disease in children with a congenital solitary kidney, especially in children with other urinary tract anomalies (like hydronephrosis). These studies show that 1 in 3 children have signs of renal injury at 9 years of age, 1 in 2 have signs of renal injury at age 18 and 1 in 2 have renal failure by age 30. These studies have large cohorts of children that are followed for around 10 years. Yet, I never read about this research on websites for lay people (e.g., on the NKF website). Does it take a long time before research is disseminated and accepted by pediatric nephrology clinicians? Why is there not word of this research on medical websites? Thank you. Tim

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