Rhea's Nephrotic Syndrome Remission Story

A Personal Introduction to Rhea's Inspiring Story :)

Meet Rhea

“I wrote off a lot of how I felt and a lot of my symptoms because of [what conventional doctors were telling me]. It was nice to find a [holistic] doctor that looked at [my] labs and was able to tell me, ‘I believe you when you say things aren’t right,’ because things on paper don’t look right. When previously, all I heard was [my labs were] within some level of acceptable range, so [doctors] no longer interacted or dealt with me.” 

The above statement, shared with me by Rhea, sums up her journey toward a natural nephrotic syndrome remission characterized by self-advocacy and unwavering determination. Rhea is a licensed massage therapist and a recreational athlete. In 2020 she was diagnosed with membranous glomerulonephritis following multiple doctor’s visits. Despite experiencing medical gaslighting and related hardships, she relentlessly stood up for herself and found healing even when the odds were stacked against her. 

Rhea’s story taps into mental health and the mind-body connection like some of the other patient stories I’ve shared. It also explores a unique diagnosis theory that Rhea pursued under the guidance of her functional medicine chiropractic doctor – ultimately correlating with nephrotic syndrome remission.

Before we dive in any further, I want to remind you that this is an anecdotal patient story I am sharing and not scientific evidence of any sort nor recommendations that you should be following without the guidance of a qualified doctor and/or practitioner. 

Rhea’s kidney journey began in 2020 when she gained 10-15 lbs within a matter of a few days. Prior to this event, she had been experiencing back pain for a while. Rhea had been getting more serious about recreational powerlifting during this time, and just assumed the weight gain was due to a shift in training style and intensity – though it seemed peculiar that it was distributed around her face and abdomen. As us nephrotic syndrome patients know, those are common areas we experience edema.

When finally enough people had commented on Rhea’s appearance, she decided to seek medical help.

Rhea's Fight for a Diagnosis

Rhea sought out her family physician for answers. During an appointment, she shared with this doctor that she had recently taken up powerlifting as a hobby. The doctor, who Rhea presumed wasn’t used to hearing about women pursuing this sport, told her that her symptoms were likely from unhealthy training habits and overeating. Rhea was sent home with prednisone and muscle relaxants.

But, as the weeks passed by, Rhea continued to retain the oddly distributed weight and knew something was off. In the era of the pandemic, she had to take her doctor’s appointments solo. She bounced from clinic to clinic over the next five months – yet not a single lab test was ordered. She explained, “They seemed to chalk [my symptoms] up to an eating disorder and an exercise disorder – thinking I’d hurt myself.” 

Rhea shared that, during this time, she was prescribed prednisone over and over again. “Doctors kept giving me steroids, then telling me that my swelling was due to the steroids,” she explained. “Eventually, I stopped taking them because [I felt the doctors] were prescribing [them] as an excuse to avoid addressing symptoms.”

She also kept being referred to counselors for eating disorder intervention. There was even one instance when a nurse pulled Rhea aside and commented, “If your husband doesn’t like how you look, you should leave him.” 

Finally, when Rhea was up 35 lbs in November of 2020, she checked into the emergency room. Thankfully her husband was allowed to go with her. Hoping for an answer to her symptoms at last, Rhea was once again gaslit. She shared, “[The doctor] pulled my husband aside and asked him if I was eating too much junk food. He specifically asked if I was eating potato chips and sitting on the couch too much. He asked him about my relationship with my body [and] if I was over-exaggerating my weight gain.” 

Rhea said she was provided discharge paperwork without a single test being run. The doctor told her that lifting is “dangerous” and she was probably lifting “incorrectly.” But Rhea and her husband stared down the doctor and said, “We’re not leaving until you run a urine panel.” 

Sure enough, a urinalysis came back with elevated urine protein and Rhea was given a diagnosis of anasarca, which is a term for full-body edema. “I was told to eat more protein [and that it was a] dietary issue,” she said. “[That] if I was more active and ate a ‘better’ diet [the proteinuria] would go away.” 

Rhea was discharged and told to follow up with her family physician, who finally ran blood work. From those results, her doctor came to the realization that something was seriously wrong. Rhea was called into the office immediately and she collected a 24-hour urine test, which showed that she was spilling 15-16 grams of protein in her urine. The doctor referred Rhea to an appointment with a nephrologist – but the diagnosis process had taken so long that Rhea couldn’t wait. Her symptoms had progressed to the point that she needed to be hospitalized.

Rhea's Early Days of Nephrotic Syndrome

Rhea now had 50 lbs of water weight on her body. (To put that into context, when I had 35 lbs of water weight on me I was bedridden. I couldn’t sit or lie down normally and had to crab walk to the bathroom.) Water weight is painful, debilitating and absolutely no joke. 

In addition, Rhea had also been experiencing severe right-flank pain and hadn’t slept in days as a result. She was also throwing up constantly due to the pain and couldn’t keep food down – not even on morphine. 

Rhea was rushed into a biopsy on her second day of the hospital stay. Her father called her ahead of the procedure to warn her that a genetic blood clotting disorder, called Factor V Leiden, ran in her family. But when Rhea let the doctors know, she said, “[I] was assured that clotting was rare in my condition.” They proceeded with the biopsy and, for whatever reason, Rhea’s flank pain subsided after the procedure. It was almost as if the universe was letting her know she was on the right path – finally!

The biopsy results indicated a diagnosis of membranous nephropathy and Rhea was told that she was in the beginning stages of renal failure. Rhea recalled that “within minutes” she was wheeled to another area of the hospital for rituximab infusions in hopes that the right medication could prevent what seemed like imminent dialysis. She spent another four or five days in the hospital receiving rituximab, high-dose steroids and high doses of multiple diuretics – along with blood pressure medication, cholesterol medication and a slew of other drugs.

Ten days after she was discharged, Rhea found herself having a hard time breathing. The water weight was putting pressure on her organs. It was now December of 2020 and Rhea found herself back in the emergency room for another four-day stay. Her last rituximab infusion was administered during this time. 

More importantly, Rhea was diagnosed with blood clots in her lungs and was told this was due to the edema and taking the birth control pill. So Rhea went off the pill and began taking blood thinners. Recall a couple paragraphs prior, Rhea raised concerns about a familial blood clotting disorder. It took six months for a doctor to willingly run a genetic test, which came back positive for both Factor V Leiden and Factor II mutation – both of which make Rhea more susceptible to clotting, particularly in her legs and lungs. 

Come mid-December, Rhea was finally headed toward stability. She recalled peeing out the first 10 lbs of water weight over the course of one night, and the edema continued to steadily decline from there. Over the course of 2021, Rhea described being extremely susceptible to retaining water and experienced swelling around the clock. She was managing this with diuretics as well as fluid and sodium restriction.

At the time, Rhea was also receiving conflicting information from her nephrologist and wasn’t sure where her health stood. “Sometimes my nephrologist would talk to me as if everything was fine and that I didn’t need to worry about anything,” she shared. “But when my husband would ask, we got different answers.” 

Ultimately, Rhea was instructed that she was hovering around Stage 3 or Stage 4 kidney disease and that there was a low chance she’d reach a complete remission. But once Rhea’s condition stabilized enough, she began a slow taper off prednisone under the guidance of her nephrologist and was fully off the steroid in the middle of 2021. She also stopped taking the diuretics and cholesterol medication. Rhea eventually reached a partial remission and didn’t require additional medical intervention.

Rhea's Call to Healing

It was when Rhea began navigating a spike in her phosphorus levels that an epiphany led her to take her health into her own hands. “[My nephrologist] asked me what I was eating,” she shared. “I ate a lot of meat so he told me I needed to give a vegan diet a shot.” 

But when Rhea tried a plant-based diet for three months, her phosphorus levels spiked. “When I saw that my phosphorus had increased so much I said, ‘Nope, I’m going back to what I know how to do,’” she said. Rhea had always been health-conscious and ate a nutritious diet. As far as her meat intake, she mainly consumed venison hunted by her husband that didn’t contain phosphate additives like a lot of grocery store meat brands do. 

“When I got [the phosphorus levels] to go down my nephrologist asked what I did and I said, ‘I stopped eating vegan,’” Rhea shared. “I started to realize that if I wanted to get better, I needed to figure it out myself. [Conventional] doctors at this point wouldn’t [be able to] help me. They got me as far as they knew how to get me.” 

And that was the catalyst to spark Rhea’s journey to a natural remission. She began working with a skilled individual holding a Doctor of Chiropractic degree and a background in functional medicine. This new doctor put Rhea on a baseline supplement protocol that he coined the “kidney triad” to support her kidneys while she awaited the first appointment. 

Rhea’s new doctor ultimately determined that she had an unspecified connective tissue disorder. And it was his explanation of this condition that finally put together the puzzle pieces for Rhea. “[He] was able to explain the role connective tissue played in my kidney disease, as well as its role in other organ systems that seemed to be affected as well,” she shared. “I was [also] experiencing digestive and cardiac issues.”

Rhea’s doctor put her on a supplement protocol to manage her kidney disease and restore balance to her body as a whole. “His thought process there was to attack all three–attack the kidneys with the ‘kidney triad.’ Then, he added some specific protocols for digestion and cardiac health,” she explained. “I stopped taking blood thinner [medication] and started using a natural blood-thinning supplement: Cyruta.”

Rhea was responding well to her new protocol with improvement showing in her bloodwork. But at one point, her doctor observed a decline in her labs. When he inquired about it, Rhea shared with him that she had been experiencing a spike in mental health systems. “When I told my doctor about that, he made the connection between my mental health and physical health,” she said.

Rhea mentioned that she had struggled with depression and bipolar disorder for most of her life. During this time, she had been undergoing transcranial magnetic stimulation (TMS) therapy to manage it. “Considering mental health and how that played into the body was something I had never [thought about] before,” she shared. “I had spent a lot of time with counselors trying to figure out a pattern to my mental health. I did not find a pattern until [my doctor] tied it to membranous glomerulonephritis. I then realized that every kidney flare I experienced was tied to every emotional flare that I had experienced. I could then look back and track that I experienced emotional symptoms right before I noticed physical ones.”

To support her mental health symptoms, Rhea’s doctor added cod liver oil to her protocol. And this supplement ended up being a game-changer for Rhea. “Cod liver oil I [have] found to be the most effective [remedy] I [have] ever tried for mental health,” she shared. In fact, Rhea recalled having her last significant mental health flare at the time she began taking cod liver oil in conjunction with the rest of the holistic protocol. Soon after, she was able to decrease TMS treatment and, concurrently, her nephrotic syndrome also began to improve.

In addition to the above pursuits, Rhea experimented with diet. She incorporated medicinal mushrooms into her protocol for their many health benefits. And she described eating asparagus and watermelon to combat swelling.

Rhea also altered the way she trained when it came to lifting weights. “I realized my body operates better at a lower fat percentage,” she shared. She took a hiatus from powerlifting and instead began working with a lifting coach that helped her meet her goal of reaching and maintaining a lower body fat percentage. 

“My kidneys had been improving significantly at this point but, when I [trained differently], [that was the] last little jump they needed,” Rhea said. Between her functional medicine protocol and fitness adaptations, Rhea’s hard work paid off. Come summer of 2022, a urine test came back negative for protein. In other words, Rhea had achieved a total remission of her membranous nephropathy! And if you recall earlier in her journey, Rhea was told by doctors that it was very unlikely she’d be able to reach remission of her nephrotic syndrome.

Rhea's Next Chapter

Rhea has experienced more than a year of total remission. But during this time she greatly missed pursuing her passion: powerlifting. She began attempting to train for the sport again in spring of 2023 while carefully monitoring her kidneys. She shared, “I’m trying to figure out what lifestyle most suits what I want and how to balance it with what my body needs.” 

Rhea eats a primarily whole-foods diet consisting of red meat (primarily venison her husband hunts), eggs and chicken, along with lots of vegetables. She consumes some fruit, non-enriched grains, potatoes and healthy starches, along with coconut oil, olive oil and avocado oil for fat. She avoids dairy due to an allergy, not necessarily because she thinks it would be conducive to remaining in remission.

When asked about her advice to all of us nephrotic syndrome patients out there, Rhea shared that the best lesson she learned was from her husband. He had been telling Rhea about his business goals and lifetime dreams. He shared that he wasn’t sure if he’d achieve everything he dreamed of in his lifetime, but that he’d work hard and die trying if he had to. And that’s when it hit Rhea that her journey was very similar. She shared, “I hit a point where I realized I could either die or die trying [to heal]. I realized I was in the same situation. I didn’t know if I could achieve [remission]. [But the] turning point was when I switched completely to natural [healing methods].” 

Rhea also shared her advice for finding the right doctor. Notably, she said it was important to find someone who really takes the time to listen. “When you ask a helpful doctor enough questions, they either have answers or they help you find answers,” she stated. “And then don’t be afraid to experiment [with] a lot of trial and error. Not everything that works for someone else will work for you. Everyone is different even if [they have the] same diagnosis.”

You can follow Rhea on Instagram @rhea_mcdonald_ for inspiring fitness content and updates on her healing journey :)