In 2018, Judy Akin was dealing with chronic exhaustion. She’d recently gotten shingles at the age of 44, been told by an urgent care doctor that her immunity was crashing, and even been in a car accident which she thinks was caused by blacking out due to hypertension. But as the full-time working mom of a young son, she chalked many of her symptoms up to the stress that accompanies parenthood and hotel catering work.
“I finally went to a doctor in the summer of 2018 and he ran all the tests, even a sleep apnea test,” she said. “When the results came back, he told me that everything was ‘borderline’ so he just told me to lose weight. It became all about my weight.”
The following year, Judy’s family moved back in with her mother because her mom was having her own health issues. While she did lose weight during this time, her other symptoms persisted.
“I decided to go back to a primary care doctor that I used to see in my late twenties, early thirties. So I see her in July of 2019 and, without even skipping a beat, she asks, ‘What’s going on with your blood pressure? It’s out of control,’” Judy said. “I told her I’m super stressed, working full time, taking care of my mom, taking care of my son, driving back and forth from Kailua to Waikiki. But she wanted to make sure, so she sent me out for a bunch of blood tests.”
A week later, Judy found out she had stage three chronic kidney disease. Apart from the aforementioned symptoms, she’d had no warning that this diagnosis was coming. Her primary care doctor shifted their focus to finding out if her blood pressure was causing the kidney disease or vice versa, so she was referred to a nephrologist.
“In Hawaii, we are in an 800 doctor shortage for specialists. We’ve been like this for years, and it’s just gotten worse since COVID-19,” she said. “So I was referred in early July and the nephrologist could get me in around mid-September. To me, that wait wasn’t too bad.”
However, on July 25th, Judy had a transient ischemic attack (also known as a mini stroke) and was hospitalized. The nephrologist was able to move up her appointment, and new tests showed that her kidney function - which had been at 44% when she’d seen her primary care physician just two weeks earlier - had now dropped to 22%.
“He says, ‘We’re admitting you. Your kidney function is down to 22% so we’re going to put you on high doses of steroids, biopsy, and find out what’s going on,” she said. “But the best part of this whole appointment was my husband. He looks at the nephrologist, who we’ve just met, and goes, ‘Can I take her out for one last cheeseburger?’”
After one more family dinner, and an explanation to her now six-year-old son, Judy was admitted to the hospital. It only took one biopsy for her to finally get a diagnosis: IgA nephropathy (IgAN). After a brief description of the condition, Judy’s doctor told her there was no treatment and no cure - but they could treat her symptoms.
“When you go home after an experience like that and you realize how rare it is and that nobody else around you even knows what this disease is… It was really isolating and really frustrating,” she said. “My least favorite comment that I kept getting was, well, at least it’s not cancer. To me, that was the most ableist thing I was told because if it was cancer, I could at least have a treatment.”
As Judy set to tackling this isolation, she started taking a class from Aloha Kidney. In addition to learning an immense amount of information about living with a chronic kidney disease, this is also when she decided that she did not want to go on dialysis. Instead, she wanted to try eating a plant-based diet and see how that impacted her overall health.
“When I got diagnosed, my husband was a chef, but he did not know how to cook plant-based food. So he tried, but it was sad,” she said. “One night, he made steamed vegetables with absolutely no seasoning on anything. I think that was the moment when I realized that I had to take control and I had to figure out how to cook for myself.”
It’s this moment that eventually led to Judy cooking live on social media. On her TikTok account, she shares her experiences of living with IgAN, including highlights of her “hot mess kitchen” and her experiences on a plant-based diet. She also shares lessons she’s learning, like “eating based on your labs” and other hard-earned lived experiences.
In another effort to battle the isolation that accompanies so many people living with chronic illnesses, Judy sought out support groups from organizations including NephCure and The IgA Nephropathy Foundation. She’s attended multiple SPARK conferences from the foundation, as well as served as an ambassador for their patient portal and flown around the country to speak at other events, too.
“Being able to meet people that are living with the same diseases as you, realizing that there’s a whole community of us experiencing the same things, has probably been the most powerful part of this whole journey,” she said. “Put aside everything else that I’ve experienced with this disease: Meeting other people who have IgAN and getting to know our community has just been incredible.”
Since her IgAN diagnosis, Judy has also been diagnosed with rheumatoid arthritis, small fiber neuropathy, and Hashimoto’s diseases. So to say she intimately understands the emotional rollercoaster of receiving a life changing diagnosis is a severe understatement.
“When you get diagnosed with a chronic illness, you go into a constant state of grief. It doesn’t go away, which can be really hard to explain to people. You can’t fully process this grief because you’re in this constant rollercoaster,” she said. “One day, you’re up here, and you’re feeling like you can conquer the world. But then you crash the next day and you feel horrible and you realize, wow, I really am this sick, yesterday was a fluke. And every time you get a new diagnosis, or have a medical setback, you start that grieving process all over again.”
While Judy used to be a fire dancer, got engaged to her husband while attending a rave, and loved hiking with her son, her goals today look markedly different. Now, her focus is entirely on being here for her son’s eighteenth birthday.
“Eighteen is the goal. That’s the motivation for me not going on dialysis because, once you go on dialysis, you have about 5-10 years left. That won’t get me to eighteen,” she said. “The impact a chronic illness has on the rest of the family is really, really challenging. Even when I’m doing well, my son knows that it can change in a heartbeat. And every time I go on a new medication, he worries that I’ll have a bad reaction like I have in the past.”
In order to reach her goal, and to hopefully surpass it, Judy’s priorities are simple.
“I don’t like to use the word remission because I’m not really in remission. But I am stable,” she said. “Stable is good. Stable is wonderful. I could live in stable for the next twenty years. I will keep doing what I’m doing in order to remain stable and live my life.”
