Holly's Nephrotic Syndrome Remission Story

Meet Holly

“Work on listening to you; just making the space for you. It’s so important, especially today. We jump out of bed, look at our phones and are ten steps ahead. I am working on pausing more and giving myself permission to do less; without comparing myself to other people. When I can truly pause, breathe, and listen, I can hear what my best self wants for me in that moment. I can know what my inner self needs."

These wise words were spoken by Holly, a nephrotic syndrome patient who continues to successfully maintain medically-negligible proteinuria without the use of conventional immunosuppressive treatments. 

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. 

Holly is an independent salon owner and went to school for health coaching. She was diagnosed with minimal change disease at age 26, but began noticing leg edema as a teenager. After her diagnosis, she pursued three and a half years of conventional treatment. But when it no longer felt right, she decided to take matters into her own hands and embarked on a life-changing holistic journey toward health.

In my opinion, this story is a fabulous example of the healing power of neuroplasticity. Holly took the time to adopt a personalized gut-healthy diet, slow her life down and ultimately take the steps to heal trauma and fear. She showed her body that it was safe and, in turn, her body responded – in fact, rather quickly! Early on in her holistic healing journey, Holly observed her swelling disappear and her proteinuria reduce to trivial levels.

Holly suspects that several aspects of her personal history could have contributed to the stress that played a role in the onset of her illness, such as:

• She was born with jaundice

• She suffered many ear, eye, nose and throat infections as a child and, as a result, had taken multiple courses of antibiotics

• She suffered severe TMJ pain earlier on in her life and had taken a lot of ibuprofen to manage the condition

• She endured childhood trauma and substance use disorder

• Leading up to her diagnosis, she experienced kidney stones, a kidney infection and UTIs

Holly's Diagnosis Story

Holly’s journey toward a kidney disease diagnosis began with multiple emergency room visits. Each visit, the doctors simply instructed her to elevate her legs and eat less salt. Finally, one day an angel-of-a-nurse pulled Holly aside and said, “I am listening to what’s going on here. There is definitely something wrong and you should definitely be seeing a specialist.” This caring nurse was able to help Holly obtain health insurance and a nephrologist to oversee her care. 

A kidney biopsy revealed Minimal Change Disease and a subsequent biopsy ruled out FSGS. During the early days of treatment, Holly described being prescribed “elephant doses” of prednisone – upwards of 150mg. She recalled being scared, sick and in pain a lot of the time with constant on-and-off infections. For three and a half years, she was constantly upping her dose and then tapering down, again and again. 

The steroid was destroying Holly’s body. She suffered symptoms like cataracts, severe joint pain and muscle and bone deterioration. Holly also wasn’t digesting her food well and her stomach was always painfully distended. She stated, “I was septic in my own body.” 

These symptoms greatly reduced the quality of Holly’s life. She was young in her twenties and couldn’t climb the three stairs into her apartment or open the door to her truck. “I couldn’t even lift myself out of bed. I was in so much pain. [I was] so weak and struggled to get up the stairs,” she said. “I felt like I was 98 years old; like I was going to die.”

At this time, Holly worked as a hair stylist at a salon. The job required her to be on her feet for long time periods – upwards of 10-12 hours per day. She stated, “I remember waking up in the morning and getting dressed. I couldn’t fit my shoes on my feet and had to wear padded flip-flops. I’d go to work with one size of clothes and grow seven sizes by the end of the day.” 

Holly eventually began taking the immunosuppressant drug, cyclosporine, which also didn’t help her proteinuria. She continued to get sicker and her nephrologist finally recommended she apply for disability benefits. But, Holly explained, “Something inside of me was just like ‘this is not it’ and ‘the answers are not here.’ This is clearly not making me better.” 

Holly's Call to Healing

The catalyst to Holly’s healing journey was when a peer recommended she look into the Institute for Integrative Nutrition, a respected and renowned nutrition and health coaching school. Upon looking into the school, Holly immediately felt a tremendous connection and intuitive alignment to its coaching program. She shared, “I signed up and this is where my healing journey started.”

Holly decided to tell her nephrologist that she wanted to take her health into her own hands. She said, “I am going to do this my own way.” And her nephrologist took a deep breath and agreed, “I’ll give you three months. I will take you off everything.” Holly said she went off 14 medications and only stayed on a tiny maintenance dose of lisinopril (5mg) for blood pressure management.

During this time, the Institute taught her how to think critically and inquisitively about each person’s unique health situation. She stated, “[They taught] what works for me may not work for someone else. Medicine for me might be poison for someone else.”

Holly took the lessons she learned at school to heart and began designing an individualized healing plan for herself. Firstly, she knew she had to become sober. She had been using alcohol to manage her pain for a long time, and she knew this was a step she would need to take to heal. Secondly, she began an elimination diet to determine potential food triggers and allergies that may have been contributing to her inflammation. Since she couldn’t digest solid food, she started out with a liquid diet consisting of a lot of smoothies and juices until she could work her way back to a normal diet.

Holly also began working with a personal trainer to start building back muscle on what she described as her very bony, frail and sickly frame at the time. “I was really listening to my body; pushing through the pain and [knowing] it would get better. I had so much excruciating pain, but it was empowering and motivating to just do it anyway,” she said. “And I did! I got stronger and started competing in fitness competitions.”

And her healing journey only blossomed from there. “I kept adding things to my basket and started balancing a lot of areas of my life: inner child work, trauma work, learning meditation and developing a yoga practice,” she said. “I started to heal not just the relationship with myself, but with everyone else.” 

Holly recalled that the above changes led to rapid healing and cleared her mind. Her swelling decreased and her digestion came back slowly, along with her brain fog subsiding. The pain in her joints, bones and cataracts disappeared. She recalled, “My eye doctor was like, ‘Wow! I would not have thought this is the same person.’”

Rather quickly, Holly’s nephrologist was pleased to see her urine protein levels plummet and didn’t recommend she go back on medication. And his sentiment remained the same for a decade!

Holly's Decade of Transformation

Holly was so inspired by her healing progress that she took a leap of faith and embarked on a six-week trip to Costa Rica to complete a yoga teacher training. “I knew I couldn’t go back to my old life. Everything had changed,” she said. “[I was ready to be] open to whatever the universe had in store for me.”

During this trip, Holly said she learned how to meditate and sit with herself, and truly hear what her body was communicating to her. She mentioned that prior to her healing, she would always avoid silence and stillness. She would fill her mental and physical space with noise: television, the radio and constant social plans. She recalled feeling constantly unsettled, like she couldn’t sit still for two seconds. She explained, “It’s about getting quiet enough to hear what it is that you need. What are you running from? What are you avoiding? What have you stuffed down [deep in your conscience] that you want to look at?”

While in Costa Rica, Holly encountered a significant breakthrough when, for the first time, she experienced spirituality during a cacao ceremony. “I’m inhaling and exhaling, and the world is breathing with me in every molecule and atom,” she recalled of her experience. “That made God possible for me. It’s the only reason I can say that word today. It was a reminder that I am a pure being. When I came into the world as a newborn, I’m still that. The layers of [trauma] that were placed on me throughout my life and the limiting beliefs, the lies and the fear – that wasn’t who I am. All of that was lifted off in that one ceremony.” 

Back at home, Holly emphasized that her most impactful experience was following the 12-Step Program to recovery for substance use disorder. She described it as a “blueprint for life.” It taught her how to achieve wellness and peace, and find purpose in her life. Notably, the program emphasized the importance of developing a relationship with something greater than herself. Holly stated that this connection to something greater remains one of her biggest healing breakthroughs. She noted that this doesn’t necessarily have to be religious or spiritual. While it could be a connection to God, the universe or mother nature – it could also be connecting to humanity as a whole, or simply one’s community!

During this time, Holly became aware that a huge source of nervous system dysregulation for her was toxic relationships. She said, “When I make healthy boundaries around [certain people] it protects my everything. Because I am so intensely triggered by them – they have the ability to make me physically ill – I know that today so I [developed] the tools for self-preservation.” 

Holly also recognized the role fear played in preventing her from achieving her desired quality of life. She stated, “I recommend doing all the things you fear to do; going places you fear to go and just leaping off that cliff and knowing that there is healing on the other side. And you will get through it.”

She doesn’t doubt for a minute that fear played a huge role in her illness. She said, “I ran from my home, ran from my trauma, ran from my feelings, ran from my guilt and shame – I ran from all of it. And that was all fear. Fear of what people might think, fear of being rejected or abandoned; [fear of] not being loved if people knew the truth about me.” 

Some time after Holly returned from her Costa Rica trip, she had the epiphany that her 17-year career at the salon was no longer conducive to her mental health. She felt called to spend time in nature and learn organic farming. “It was so hard,” she said. “I had to psych myself up when I made the decision. It took me two years to leave!”

But the experience was well worth it. Holly found immense healing from connecting with like-minded people on the farm at which she worked. These people were also striving to become the best versions of themselves and shared her passion for healthy, natural living. She explained, “[It was an] extremely hard but really exhilarating part of my life. I just continued to grow from experience and learned so much reconnecting to the Earth and the core of myself. [I was] learning how to build community with other humans. [I was learning] all these things not taught [in school].” 

Above all, Holly’s healing journey could be summed up as the decade of self-love. And, as for her nephrotic syndrome, it remained dormant the entire time. As Holly put it, “I forgot I had it!”

Holly's Bump in the Road

But even Holly is not invincible. This new way of life she had curated for herself wasn’t a temporary protocol; it would need to become her forever normal if she were to maintain her health.

When the pandemic times hit, Holly was not only enduring the stress of COVID like the rest of us, but she was experiencing a lot of changes in her life. Granted, exciting changes! She had entered a serious relationship and married this partner, purchased a home and moved to a new community. But change, good or bad, brings stress with it!

Holly soon observed that her proteinuria returned along with nephrotic syndrome symptoms. She noted at this point that she was not eating the way she should nor taking care of herself like she had been previously. “I wasn’t taking the time to calm my nervous system and I wasn’t supporting my immune system,” she explained. “All the things I know I let fall by the wayside because I was [preoccupied] with all this other stuff.”

Her nephrologist grew concerned and recommended she go back on prednisone and plan for rituximab infusions. But Holly couldn’t imagine pursuing that all over again; not after everything she had been through. She ended up switching to a different nephrologist with whom she felt more aligned from a holistic standpoint.

Holly began once again with a diet and lifestyle cleanse like she had a decade prior. “I started doing what I needed to do: eliminating [certain] foods, bringing back my peace and meditation, making time for myself, saying ‘no’ when I needed to say no and finding my community again,” she said. “I knew what I needed – so I just did it!”

She ran blood and urine labs once more with her new nephrologist, who was pleased to report back optimal protein levels. Holly explained to this doctor everything that had happened to her and what she had done to regain her health. Her nephrologist replied, “Your numbers – everything looks fantastic!”

Holly's Next Chapter

Today Holly is thriving and living out many of her dreams. She now owns and runs her own salon business. She is also an avid gardener and grows as many fresh fruits and vegetables at her home as she possibly can. She also raises backyard chickens on organic feed and consumes their eggs. 

In terms of diet, Holly avoids gluten and dairy, and consumes a minimal amount of organic, high-quality meat to keep up her energy, bodily warmth and optimal blood pressure levels. 

In her free time, Holly finds fulfillment in using her health coaching background to support family, friends and peers on their healing journeys. But what brings her the most fulfillment is taking the lessons she learned from her own experiences and helping others walking a similar path. She shared, “My greatest joy is to sponsor women to help them overcome their substance use disorder by digging in and doing the work to heal past trauma, overcome fears and live from a place of connectedness and serenity.”

And Holly's relationship with something greater still remains significant. She shared some beautiful words: “Being in nature is where I feel most connected – looking at the stars, feeling like those are my ancestors that are guiding me; being in the mountains of Peru and just feeling and hearing the wisdom that’s been there for millennia. That is what I connect to.” 

When asked about her advice to all of us nephrotic syndrome patients out there, Holly stated, “My root is addiction and trauma. People don’t want to identify as having trauma. Things like emotional neglect as a child; things like that are so deep and cutting and people don’t realize that we all have it. We all have some form of [trauma] and it’s just a matter of seeing it and bringing it to light. The light can dispel the darkness. It just wants to come up and be seen.”