By Traci Krist, NKF Kidney Advocacy Committee advocate

Today, Traci shares her perspective as a mother to a son with pediatric kidney disease. In our next blog post, her son, Tanner, will share his perspective on living with pediatric kidney disease. Tanner receives nephrology care at the Children’s Hospital of Pittsburgh of UPMC.

My husband and I never stop worrying. We worry about everything. Did he drink enough today? Is his diet balanced? Do any classmates have a contagious infection? Did he take a nap? Is he getting sick? Is he moody? Do you think this is a sign of rejection? These questions and concerns never end. They are always in the back of our minds waiting for an opportunity to become our reality.

Our family has been living with chronic kidney disease (CKD) since July 1, 2001: the day our first and only child, Tanner, was born. He was born 7 weeks premature with underdeveloped kidneys. His chronic kidney disease is not affiliated with any disease or syndrome. By the time Tanner was 5 years old, his kidney function had decreased to a point that he needed a transplant. Over the next nine months, we prepared for Tanner’s transplant. And on April 11, 2007, Tanner’s father donated a kidney to his son.

Adjusting to life on the other side of transplant was interesting. For the first time ever, Tanner could eat almost anything he wanted. Every meal was a treat. So many new foods to try. We relished each meal as if it were a reason to rejoice and celebrate.

It was also during this time we developed the daily habits and routines to earn a gold star every time we visited the doctor’s office. These habits and routines included recording fluid intake and output, setting alarms when it was time for Tanner to take medications, making sure hands were washed or sanitized randomly throughout the day, and covering Tanner in sunscreen whenever he was going to be outside.

As the days and weeks went by after the transplant, we never wavered with our daily routine: Set alarms and take meds at 8:00 a.m. and 9:00 a.m., then again at 8:00 p.m. and 9:00 p.m. This schedule never ended and never wavered. If Tanner was with family, friends, or sitters we would call or send a text to make sure the medicines were taken. This was a challenging time because my husband and I had to believe that when Tanner was with other people, he would get meds on-time, drink enough fluid, not be exposed to contagious infections and most importantly wear his kidney shield all of the time.

We’ve always been tentative about Tanner spending the night at friends’ houses. We recognized that many families care about Tanner and have compassion for him but have no idea how many little details are part of our daily routine. For instance, many mothers can still be seen licking their thumb to get dirt off a child’s face or allowing a piece of candy to be eaten…

“Five second rule!”

How many times do children share cups, utensils and food? We’ve made it our goal to not freak out in any of these situations. We simply say “No, thank you.” or “Thank you for helping,” then go about sanitizing, cleaning, fixing, or replacing whatever is needed from the situation.

As Tanner is getting older, our daily routines are not changing. We still record fluid input and monitor what he eats. It is important that he gets his minimal fluid input each day. Because some of the medications he takes have changed, we are able to be more lenient about the times that he takes them each day. In turn, that offers much needed flexibility for his teenage lifestyle.

My husband and I knew that having a child with a transplanted kidney would take a lot of time, energy and communication. What we weren’t prepared for were some of the dips and bumps in the rollercoaster of transplant life. Just when we thought things were going well, Tanner would have a case of rejection and we’d have to spend 5-10 days in the hospital getting treatments.

Then there were the post-rejection consequences —such as no physical activities for two weeks, more medicines and their side effects, more frequent labs— that seemed to simply interfere with Tanner’s otherwise typical activities.

Over the years, no matter how many rejection episodes for which Tanner was treated, my husband and I always have the same fears and emotions. The fears shall remain unspoken because I am superstitious and believe if I say it, it may become a reality. Therefore, it is much better to keep those fears wrapped up and tucked inside. These emotions aren’t so easily concealed. No longer can I get away with happy tears. Today, it is not unusual for us to cry as a family. If one of us starts crying, the other will be soon thereafter.

Another aspect of post-transplant life for which we weren’t truly prepared is all the other health related issues that can develop or cause concern. At the forefront are long-lasting side-effects because of the steroid treatments given to stop rejection. For the past three years, Tanner has had to test his blood glucose levels and take insulin for varying lengths of time after he is treated for rejection. This has likely been the biggest challenge we’ve had as a family.

Tanner is considered to be diabetic. And this angers him. Tanner flat-out denies that he has a diabetes problem. He is adamant that it’s a short-term problem and will go away. Unfortunately, that may not be the case. Long-term care may be required to aid his pancreas in production of insulin. Only time will tell.

During these teenage years, we try to continue to be a typical family. But it’s hard when the concerns, issues, or routines are too real. They keep us vigilant, we remain hopeful for Tanner’s future.

Learn more about chronic kidney disease.  Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.