Preparation and Perseverance - Part 1
Chelsea's Story of Self-Advocacy and Triumph
Some people are born fighters. For Chelsea Roman of Grass Valley, CA, that phrase is very – very – literal. Born two months premature, she weighed just 3 pounds at birth and was technically not alive for her first five minutes in the world. After battling for her first breath, another fight had already begun.
"I spent two days with absolutely no kidney function," Chelsea recounts. "I ballooned up. Looking back on those pictures, it‘s like ‘Wow, that‘s shocking a young baby can even come back from that!"‘
But come back she did, and despite her kidney function never exceeding 25%, she‘s been a warrior and persistent self-advocate ever since – always looking for ways to keep healthy and keep control of her life and future.
"My whole life I always prepared for dialysis, because I knew it was coming," Chelsea remembers. "Growing up, my mom told me to preserve my kidney function for as long as possible."
As a child, preparing meant a mental and emotional approach. Getting used to the idea that this was all lurking out there, waiting. But it also meant sticking rigidly to renal-friendly foods, which her mom lovingly prepared, even after losing her husband when Chelsea was 5.
"Mom rarely cooked with processed food, rarely used salt, which has carried over into my own cooking too," says Chelsea. "So I went 33 years without dialysis, with 25% kidney function."
Throughout those years, there have been further challenges and tragedies. Her dad‘s passing had a huge impact, and the drugs administered when she was still an infant left her with partial hearing loss, as well as a learning disability. She also had poor vision and wore "Coke-bottle-thick" glasses for years. But she never let these things stop her, slow her down, or get her down.
- Hearing loss? … "It‘s kind of cool because my phone call right now is streaming through hearing aids," she says. (This is also how she listens to music.)
- Bullies? … "I wasn’t going to be victimized. I was going to overcome it."
- Physical education and activities were hard. Didn‘t matter … "Tennis, volleyball, swimming, gymnastics, I tried it all," says Chelsea. "My mom never wanted me to get hit in the kidneys, so no impact sports, but tennis was one of my favorite sports and still is."
- They said she wouldn‘t graduate high school … She did. And then college.
While clearing hurdle after hurdle, Chelsea has focused, almost exclusively, on a singular goal – clearing the path for the best life possible once her kidneys started to fail, something her mother encouraged.
Chelsea’s mom, Lisa Miglietta, was one of her biggest cheerleaders, and the person who kept her on track and accountable from a health perspective. So, when she died in 2008 from ovarian cancer, Chelsea again lost a parent, as well as a friend and committed advocate.
"I was 24 when she passed away," Chelsea recalls. "She was always right there … It’s one thing to have a parent pass away when you’re young, and you have to deal with that, but it’s another to do that with a chronic illness. It’s a lot more difficult to navigate."
With her #1 supporter gone, Chelsea had more on her shoulders than ever – things as simple as keeping up with her labs, and more serious issues like monitoring for cancer and preventative surgeries. She has had three – a double mastectomy, as well as the removal of her ovaries and half her thyroid glands – all in an effort to remain cancer free and be able to focus solely on her kidney health.
In addition, in 2015 she had a fistula put in and moved to the Sacramento area to be closer to her hospital and nephrologist. And just to make sure things stayed interesting, in the middle of all that she got married to her best friend and righthand man, Mark, who had basically signed up for the latter role when the couple first met.
"I told him on our first date, ‘I‘ve got kidney disease, and this is what’s coming down the pike,‘" Chelsea recounts. "And he said, ‘I’m not scared at all."’
All the prep came to a head in 2017, when, while on vacation, Chelsea started to get a metallic taste in her mouth. She knew. A visit to her nephrologist confirmed Chelsea’s kidney function was down to 9% and it was recommended she start dialysis.
"I packed my stuff, a blanket, and a pillow, and was off to start dialysis," says Chelsea. It would be the beginning of yet another inspirational chapter in her life.
In Part 2 we’ll continue Chelsea’s story, learning about her dialysis journey and all the amazing ways she promotes kidney care for herself and others.