Riding the rollercoaster: How Ariana Barton learned to live with IgA nephropathy

AKF Ambassador Ariana Barton's journey with IgA nephropathy (IgAN), a rare disease that causes kidney damage when the immune system produces antibodies in the kidneys, started in 2022 with lower back pain when she was 29 years old - back pain she assumed was caused by sleeping badly. But after two weeks, the pain had not gone away, and she noticed something alarming: her urine was brown.  

"At that point, I knew it wasn't just lower back pain," Ariana said. "I thought something must be wrong with my kidneys." She scheduled an appointment with her primary care doctor, who performed a urinalysis (urine test) and blood tests. The blood tests showed that Ariana's estimated glomerular filtration rate (eGFR) was 70 – below what is considered the 'normal range' for someone Ariana's age with normal kidney function. 

"Right away, the doctors homed in on the fact that I'm a type 2 diabetic, and they said they were going to treat my diabetes," she said. Ariana was frustrated, as her diabetes was under control without medicines, but she listened to her doctor and started taking metformin to treat her blood sugar levels, as well as a round of antibiotics to treat a potential urinary tract infection (UTI).  

Unfortunately, neither medicine had an impact, and Ariana's first visit with a nephrologist only added to her frustrations. The nephrologist was convinced she had a UTI and put her on a second and third round of antibiotics, which also had no impact. 

Finally, Ariana saw a urologist, who told her what she was experiencing was "definitely not" a UTI. She then discovered that the nephrologist had not informed her that her eGFR had fallen from 70 to 34, which would indicate moderately to severely decreased kidney function. "At that point, I was really annoyed," Ariana said. She investigated getting a second opinion, though she consented to getting a kidney biopsy upon recommendation by her original nephrologist. 

That biopsy confirmed that Ariana had IgAN, which involves harmful inflammation in the kidneys that lowers the kidneys' ability to filter waste and fluid from the blood. After receiving two different treatment recommendations from her original nephrologist and a second nephrologist, Ariana took the advice of the second nephrologist, and began taking medicine for high blood pressure, which she said has helped her significantly.   

Making modifications to what she eats and drinks has also been a critical part of Ariana's treatment plan. "[After my diagnosis], I immediately started seeing a dietitian to get a better understanding of what I should be doing and what my priorities should be as far as my nutrition goes," Ariana said. "[The dietitian] gave me some good guidelines as far as the foods that I like to eat, which was super helpful because initially I was scared that [developing a kidney-friendly eating plan] would be a more difficult adjustment, but it was easier than I thought it would be."  

When it comes to long-term treatment goals, Ariana said she and her doctor are "playing it by ear," as there is no set roadmap for someone living with IgAN. "I could be fine one day and then not fine the next, and it's an unpredictable thing that I have to come to terms with," she said. However, her doctor considers her to be stable, and they both are hopeful that Ariana won't need dialysis or a transplant anytime soon. 

Regardless of what happens, Ariana said living with IgAN involves a "roller coaster" of emotions. "I'll be fine and living my life, and then all the sudden [I remember], 'Oh, I have kidney disease,'" she said. "It will hit me like a ton of bricks out of nowhere, and [I think], 'It's going to be this dark cloud looming over me for the rest of my life because there's no cure,' and the fact that it never goes away is the most difficult part."  

Still, Ariana stressed that there are ways to cope. "I've established a strong community of support around me and have become friends with other people who have IgAN," she said. Some of those people have experienced kidney failure and are on dialysis or living with a transplant, and Ariana said their outlook on life and their future has been encouraging. "Kidney failure isn't a death sentence," she said. "Life goes on, and it's been great to interact with people who live with kidney failure and aren't miserable." 

Ariana said her biggest piece of advice to other people living with IgAN or any other kidney disease is to be an active participant in their health care and remember that knowledge is power. "Patients don't need to be afraid to look at their labs and ask [their doctor] questions," she said. "You deserve to have clarity about everything you're going through. Patients need to realize that they should speak up for themselves, and that it's okay to seek a second opinion. Finally, seek out education and support, because your doctor may not necessarily give you what you need unless you demand it." 

More Information on IgAN is available on AKF's website. 

Read Ariana's blog on living with IgANhere.