My Journey with Chronic Kidney Disease: From Survival to Advocacy and Connection

Hi, I’m Christy, a 39-year-old living with Chronic Kidney Disease. After years of volunteer work, charity and blogging, I now run my own podcast, Chronically Christy. Over the years, I’ve faced countless challenges, but I’ve also built a life full of resilience, connection, and advocacy. Through my podcast, I’ve had the privilege of connecting with patients worldwide, helping others on their kidney journeys, sharing my own experiences, and learning from others, which has become a passion I truly cherish.

A Life-Changing Event

In 2006, at just 21, my life took a dramatic turn. My appendix burst, leading to septicemia, peritonitis, and eventually multiple organ failure. My bowels ruptured, and my kidneys failed. I fell into a six-week coma and spent six months in the hospital recovering. When I finally went home, it was with a stoma and a grueling dialysis schedule.

At an age when I imagined starting my career or planning for a family, I was instead adapting to an entirely new way of life. Hospital visits became my norm. This sudden upheaval forced me to grow up quickly, but I’m incredibly grateful for the strong support network that kept me going.

A black and white image of Christy, a white woman, she is laid in a hospital bed and looks sad and tired, she is wearing a hospital gown with the words NHS Royal Liverpool Hospital just visible. Purpl Disabled Discount member story

The Road to Resilience

This life-altering event reshaped my entire perspective. Despite the setbacks, I returned to university, got married, and underwent countless surgeries, including a kidney transplant from my husband, which sadly didn’t work. But I never stopped pushing forward.

In 2014, I received a transplant from a deceased donor. Initially, there were complications, but eventually, I regained strength and enjoyed a dialysis-free life for nearly 10 years. With no dialysis we could travel and my husband and I made the most of it, traveling the world and creating memories I’ll treasure forever.

The Challenges of Decline

By 2023, however, I began to feel weak again. Gout flares, frequent infections, and the toll of immunosuppressants made life increasingly difficult. Early in 2024, I took steps to prepare for a possible decline in mobility, purchasing a walking stick and an emergency wheelchair. My transplant finally failed in July 2024, just shy of its 10-year anniversary. I’m now back on dialysis, adjusting to its demands while navigating life as a 39-year-old – wiser, but admittedly a little wobblier!

It’s not easy, but I’m back on the transplant list and growing stronger every day, thanks in part to counselling, which I had long resisted. It’s a reminder that asking for help isn’t a weakness; it’s a way to reclaim your strength.

Christy is a white woman in her late 30s, she is sat in a wheelchair on a promenade by a beach with railing and sand and sea behind her, she is holding a dog lead attached to two light coloured dogs, possible labradoodles. Purpl Disabled Discount member story

Living with Chronic Kidney Disease: My Advice to Others

People often ask me for advice about living with chronic kidney disease. Here’s what I tell them:

Advocate for yourself: Learn everything you can about your condition and never be afraid to speak up for your needs.
Take care of yourself: You can’t control everything, but maintaining your health where possible can improve your quality of life.
Seek the support you need: Whether it’s financial aid, counseling, or community, don’t hesitate to access the resources available to you.

Navigating the Disability Price Tag

Living with a disability is expensive. On average, disabled households need an additional £1,010 a month to maintain the same standard of living as non-disabled households. Over the past year, we’ve faced significant expenses as my transplant failed—mobility aids, a foldaway bed for bad days, and countless trips to the hospital for dialysis and appointments.

I’m fortunate that my husband has a good job, and my Personal Independence Payment (PIP) helps, but I urge anyone with a disability to apply for all the benefits they’re entitled to. Yes, the system can be frustrating and disheartening, but the support can make a world of difference. If you aren’t sure what you may be entitled to, you can use a Benefits Calculator like this one by Turn2us.

Christy is a blonde white woman aged 39, she is smiling to camera wearing a black and white patterned top and is sat on a bench, it looks like she is on holiday as there are palm trees and a concourse behind her. She is holding a glass with red/purple liquid in it as though she is about to cheers someone and is smiling and looks relaxed and content. Purpl Disabled Discount member story

Connecting Through My Podcast

Starting my podcast has been one of the most rewarding parts of my journey. I created it to connect with other patients, share stories, and help others navigate their own paths with chronic illness. My second episode, where I shared my story, remains the most popular—it’s raw, real, and relatable.

Since then, I’ve covered topics like kidney disease types, dialysis methods, and the challenges of transplant failure. I’ve also invited incredible guests, including nurses and dietitians, to share their expertise. My hope is that listeners find it helpful, entertaining, and above all, a reminder that they’re not alone. Plus, I sprinkle in some terrible jokes to keep things light!

Looking Ahead with Hope

Despite the hurdles, I remain hopeful for the future. Whether it’s finding strength through counseling, advocating for others, or simply sharing my experiences, I’m determined to make the most of this journey. Chronic kidney disease is a challenge, but it’s also taught me resilience, connection, and the power of finding joy in the midst of hardship.

If you’d like to join me on this journey, you can find my podcast here: Chronically Christy. Together, we can navigate this road and remind each other that even in the toughest times, we’re never truly alone.

A Purpl Disabled Discounts Member Story

Thank you to Christy for sharing with us today, if you are looking for ways to help with benefits or saving money, be sure to check out other blog posts and our latest discounts and deals. If you would like to share your story please send an email to [email protected]