Living with Kidney Failure: “I Don't Live to Do Dialysis. I Do Dialysis to Live.”

Christina Gilchrist’s medical challenges began with a routine sports physical when she was only twelve. She’d go on to face many obstacles, from kidney failure to seizures and permanent loss of eyesight. Through it all, Christina never gave up hope, found unexpected love, and discovered a new sense of purpose that has transformed her life in ways she never imagined. 

From mild nephritis to kidney failure

When Christina’s doctor found protein in her urine, they sent her for a biopsy that revealed Glomerulonephritis, or nephritis, a group of diseases that injure the part of the kidney that filters blood (glomeruli).

"My doctor wasn’t sure what type of nephritis I had but assured us it was mild and said not to worry about it until I'm much older," Christina said. "Over the years I'd ask if there was anything I could do to prevent kidney failure and he'd always say, 'No.' It's a bummer because I could have been following a certain diet to slow down the progression of my kidney disease."

When Christina was 22, she got pregnant but kept gaining fluid and ended up with a complication of pregnancy preeclampsia or severe high blood pressure. While rare, the high blood pressure began to damage her eyes and cause seizures. 

"During one seizure I lost my eyesight. My kidney disease also got worse, I developed permanent hypertension, and I lost my kidneys shortly after giving birth," said Christina. "My baby was born early. She had no intestines, developed an infection, and was life-flighted to another hospital where she had three life-saving surgeries."

Christina was worried for her newborn but stuck in the hospital dealing with her own life-threatening medical complications. 

"Normally, preeclampsia goes away after the placenta is out, but mine kept getting worse. I didn’t know what was going on with my daughter and was completely blind. We used drops to get blood out of my eyes and I started getting some eyesight back but it stopped improving after six months," said Christina. "I still only have peripheral vision that is blurry like looking underwater."

Christina lost her job, couldn't drive anymore, and ended up in a custody battle for her daughter. 

"I lost everything and had to become a completely new person. My ex took me to court, using my eyesight and kidney failure against me," said Christina. "I ended up getting custody in the end and my wonderful parents stepped up to help me take care of my baby."

Learn more about nephritis. 

From dialysis to transplant and back again

Christina's parents weren't the only ones helping her get back on her feet. 

"I have a big family with eight siblings and my big brother was a perfect kidney match. I did dialysis for two months and then he donated a kidney to me on December 9th, 2008. I thought I hit the jackpot and would never have to worry about dialysis again," Christina said. "Unfortunately, I started rejecting that kidney a year and a half later. We tried high-dose steroids, but the kidney had to be removed three years after surgery."

After hearing that she couldn't do peritoneal dialysis (PD) because of her eyesight, Christina started in-center hemodialysis.

"I ended up doing five years in-center, the hardest years of my life. I had to force myself to be a mom because I didn't want my daughter to go without," said Christina. "I would go to dialysis, leave, then struggle to walk my daughter to soccer. I'd recover under a tree while she was practicing, then struggle to go home, make dinner, and help with homework. Being a single parent is hard enough but dialysis made it a constant battle to do "normal" things every day."

In 2016, Christina got an exciting call–another kidney was available for her!

"I was so excited, thinking if I get a kidney, I would be good. I went in and I got the transplant on May 7th. It was my new lease on life," Christina said. "After recovering, I decided to start dating again.”

She logged into Facebook and saw a message from a man named Michael. They had never met but had many friends in common who’d suggested Michael reach out, believing they would get along. Intrigued, Christina messaged back.

Living with kidney disease and navigating your journey can feel overwhelming. Empower yourself with knowledge and resources from the NKF Kidney Learning Center. 

Finding love and life's purpose

The two hit it off immediately and began dating. 

"I was a single father and I fell in love with her because of her dedication to her daughter," said Michael. "I was working three jobs, trying my best, and that couldn't compare to taking care of a child while on dialysis."

The two spent time together, traveling and getting to know each other's families. At the same time, Christina's second transplant was in the process of failing. 

"I wasn't going to give up the life I had. I was traveling with him, camping with our girls, and being the mom I always wanted to be. I was present and we were loving life so it wasn't acceptable to go back to in-center hemodialysis," Christina said. " I went back to my doctor and pushed for peritoneal dialysis (PD).”

Soon after, Michael proposed, and Christina said yes!

They were married, had a fantastic honeymoon, and started their lives together. Knowing Christina’s body would eventually reject the PD catheter, the couple also started researching home hemodialysis. Ask Congress to support legislation that would help more patients get home dialysis..

"We have no problem with in-center dialysis but it didn't work for her. We pushed hard for home hemodialysis and the doctors eventually agreed," said Michael. "That's the biggest piece of advice I can offer–stand up for yourself."

"We put a lot of time and effort into it. Michael studied every single night and we finally did the first home dialysis treatment on Christmas Eve 2021. It was incredible," said Christina. "I had my family over like normal, we had dinner together, and I did dialysis while everyone was there."

They've recently switched to nocturnal hemodialysis, which has given them more flexibility to do what they love. 

"It's amazing showing other care partners pictures of Christina up in the mountains doing dialysis. We love pushing the envelope, safely. We don't let her doctor tell her she can't do something. We ask how we can do it effectively and carefully," said Michael. "My main job as a caretaker and partner is to make her laugh. Just make sure you make time for yourself too because if you're unhealthy, you're not going to be able to take care of them."

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"When we fell in love, we fell deeply. We have an amazing relationship. When he became my care partner we grew to a level that I didn't think was possible," said Christina. "I trust this man with my life. We have truly become partners in this and I know I'm not alone anymore."

Now, they run an online support group and a podcast to share their tips for living a good life on dialysis while fighting for all people with kidney disease as Voices for Kidney Health advocates.

@living_on_dialysis Was doing the training for NKF!’ Lots of info!! My brain is soo tired! #senmikelee #senatorromney #repjohncurtis #repblakemoore #NKF #mykidneyvoice #christinagilchrist #blindchickliving #michaelgilchrist #thecaretaker #livingondialysis #moosepomskyservicedog ♬ original sound BLIND CHICK LIVING on dialysis

"Through National Kidney Foundation, we've met hundreds of people going through the same thing I am. It's great to lean on people going through that and find somebody who can be your positivity when you're upset and down in the dumps. We all know what it feels like, and we can help each other get through this," Christina said. "My favorite thing to say is, "I don't live to do dialysis. I do dialysis to live."

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