Perspective: Growing up with a progressive form of kidney disease

My name is Henry Nalker and I was born with a rare disorder called Joubert syndrome, which is a neurological disorder that can also involve kidney, retina and/or liver disease. At age five, my family and I found out that I have a progressive form of kidney disease genetically linked to my Joubert syndrome. I’m now 18, and in the 13 years since my kidney disease diagnosis, I’ve been on a medical journey that most kids my age don’t normally face.

Living with kidney disease can often be difficult. Before my kidney transplant, I was fortunate to not need dialysis, but I did have to go to the doctor monthly and during those visits I got blood drawn each time. I also had to train myself to drink a lot of water as part of the fluid plan my doctor recommended for me. I carried around a Camelbak® backpack with a 2.5-liter water pouch at school to make sure I stayed hydrated, tracked my water intake, and did not have to miss class time running back and forth to the water fountain or refilling a water bottle. I also had to take more frequent water breaks during outside activities. In addition, because my kidneys stopped producing hormones, I wet the bed every night until I got a transplant. You can imagine how this prevented participation in things like sleepovers and overnight camps, and made family trips challenging.

Fortunately, I received a very special gift from my mom a couple of years ago. She donated one of her kidneys to me on July 20, 2015. My mom and I will always share an extra special connection after receiving her kidney, and I am very thankful that the transplant went smoothly for both of us.

I stayed in the hospital for about 3 weeks after the transplant. My mom had to stay in the hospital as a patient for two days as she recovered, but she came to visit me as often as possible after she was released. I took lots of long walks around the hospital to help my recovery. I was also required to drink even more water than before—seven liters per day at first (most people are only advised to drink two liters per day)—and doctors continuously monitored my new kidney to make sure my body was not rejecting it.

For the first three months after my transplant, I had to stay in isolated spaces so that I wouldn’t catch germs that could harm my new kidney, as my immune system was extremely suppressed. I couldn’t go to crowded places with friends, including school. Instead, I had homebound instruction from my school district, which meant missing out on the first three months of freshman year and not seeing friends at school. When I returned to school in November, four months after my transplant, I had to be extra careful about staying away from people who were sick, and I had to wash my hands often to avoid germs.

Unfortunately, I had a kidney rejection episode a year later at the beginning of my sophomore year. I was hospitalized at Johns Hopkins off and on throughout the first few months of school that year, and then later had to undergo plasmapheresis three times a week for a while as an outpatient. Plasmapheresis is a process where your blood is filtered to remove harmful antibodies from plasma that could be affecting kidney function. Thankfully, this procedure worked, and my kidney has been working well since then.

Having a transplanted kidney is an incredible blessing, and a new normal. Fortunately, I’ve been able to connect with other people who’ve also had kidney transplants, learning how they’ve coped with their new normal. Every two years in October, Johns Hopkins hosts a reunion for kidney transplant recipients and their families in Baltimore. My family and I really appreciate these reunions because they are a chance to meet other recipients and hear about their kidney journeys. Many people share personal stories and the paths that led them to kidney transplant. It was also truly amazing to learn some Johns Hopkins transplant patients have had a transplanted kidney for more than 25 years!

At my first reunion, another recipient suggested that I attend a camp that Johns Hopkins hosts for one weekend every spring for children who have received kidney transplants. Camp All-Stars takes place at Camp Letts, a YMCA camp located near the Chesapeake Bay in Maryland. Many pediatric kidney patients will never get the opportunity to go to sleepaway camp because of their medical needs, which is why Camp All-Stars accommodates those needs to make me and other kids feel included. For the two years that I’ve attended Camp All-Stars, they’ve planned many fun activities, including things like horseback riding. My second year, I had the opportunity to be a student leader, which meant I got to help lead activities and events at the camp.

Johns Hopkins generously provides this camp for free, thanks to sponsorships from organizations like the American Kidney Fund. These sponsorships make the camp experience possible to many more kids with specialized medical needs, who otherwise would not be able to participate in a camp setting. Camp All-Stars is important to me and the other campers because it gives us the opportunity to step out of our comfort zone and experience a fun overnight camp in a worry-free environment.

I will always appreciate my experiences and new friends at Camp All-Stars, and I hope more kids get to experience it if they get the chance.

Read Henry’s mom’s perspective as his caregiver and kidney donor.

The American Kidney Fund (AKF) is proud to sponsor Camp All-Stars, thanks in part to a generous gift from the Robert I. Schattner Foundation that enables AKF to support summer enrichment activities for young kidney patients.

Posted: | Author: Henry Nalker

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