Supporting a Loved One with Chronic Kidney Disease

By Josie Lafontant

When I was in third grade, my favorite subject in school was English. I loved reading books about faraway places and adored journaling about my daily adventures. The absolute best part, however, was learning new words. I proudly recited my precocious vocabulary to my ever-impressed parents, who nodded and smiled as I managed to declare the word “procedure” through gapped teeth for the fifth time that afternoon.

So, when my sister was diagnosed with chronic kidney disease, or CKD, at age 12, it became just another vocabulary quiz for me. Nephrology, creatinine, dialysis, transplant. The letters, the syllables, the definitions; they all made sense to me.

What I struggled to understand was what they meant to my family.

For my sister, the words meant constant doctor visits, nightly injections, and perpetual testing. For my parents, the words meant insurance difficulties, endless online research, and lots of worry.

As a child, I didn’t know the best ways to support my family through my sister’s diagnosis, consultations, or eventual transplant—and I don’t blame that 10-year-old at all. But now, seven years later, I can confidently share what means the most when supporting a close friend or family member with chronic kidney disease.

Adapt meals to fit a kidney-friendly diet.
Before her diagnosis, one of my family’s favorite foods was salted bagels. You can imagine how quickly that ended! If you’re living with someone with CKD, expressing your support can be as simple as implementing small changes in what you eat as an act of solidarity. You may even find that your palette expands as you learn to cook low-sodium meals!

Offer to drive someone to dialysis or a doctor’s appointment.
Commutes to and from dialysis clinics or hospitals multiple days a week can be exhausting and bleak. Brightening up someone’s day by accompanying them on their route can make all the difference. If you live far away, consider setting up a call or video chat during dialysis hours. It’s a great time to catch up!

Do your research.
Knowing basic terminology, as well as familiarizing yourself with common symptoms and treatments, can help you feel more prepared in conversing with your loved one. This knowledge can also help you validate and understand the new challenges they may be facing. Here’s a great place to start.

Notice when they’re not feeling well.
Depending on the stage, CKD comes with a plethora of physical symptoms that can leave your loved one fatigued, nauseous, or in pain. Even more so, chronic illness can greatly affect someone’s mental health. Learn what works to alleviate some of these uncomfortable feelings—both corporal and emotional—and offer your assistance. For my sister and I, this meant viewing a favorite movie, racing each other for hours on Mario Kart, or going for a walk through our neighborhood.

 Register as an organ donor.
That little pink dot or red heart on your driver’s license says so much. Opting in to organ donation puts some real weight behind your words. But if you’re really invested in changing a life, consider becoming a living donor. Even if you’re not a match for someone close to you, you have many options. For example, you can donate to strangers, or participate in “chains” or “clusters” that spread goodwill and kidneys everywhere. Find more information about that here.

Get involved in the Community
These past few years, I’ve helped at RSN’s annual teen prom, preparing fun-filled boxes during the COVID-19 pandemic for kids around the country. It’s been a blast.  We are gearing up for next years Prom. I’m making a difference and it feels good. Consider creating your own fundraiser for the Prom or joining efforts to boost organ donation awareness in your area.

It’s always good idea to know your skills when approaching a non-profit in how you can help.  Every nonprofit likes to have a social media volunteer who help amplify their message.  I encourage you to check out what nonprofits do and see how you can be of assistance.

Finally, don’t be afraid to ask.
Each person who has an illness is different, and their needs will reflect that. The only way you can find out exactly what someone wants is by asking them yourself!

Just like that vocabulary-obsessed kid, you may not always know the right words to say, or realize the correct steps to take, but the important thing is that you’re there. Navigating chronic illness is a difficult journey, but the genuine compassion someone receives from friends and family is an absolute invaluable resource. Happy supporting!

Josie Lafontant is a senior at Notre Dame High School, where she is the editor-in-chief of the Knight Online Blog. Her hobbies include playing guitar, participating in theater, and pole vaulting with her team. She hopes to inspire other young people to advocate for CKD awareness.



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