“Words can’t describe the heart-shattering moment on Valentine’s Day 2020 when the nurses unhooked the IV from my hand and told me we were stopping the Rituximab infusion. I burst into tears and cried so hard I was gasping for air, just trying to breathe. A nurse handed me a phone, and my doctor began to speak.
‘I’m so sorry,’ she began, ‘I know how hard we worked for this.’
‘It was my last chance,’ I said, my voice cracking.
‘I hoped this would be the answer,’ she said. ‘There’s not really much else out there to try.’
I silently nodded while tears streamed down my cheeks because my doctor was right. There were no more good options. I was covered in hot hives, my cheeks were flushed, and my throat and ears were unbelievably dry and itchy. Turns out, I was allergic to the medication that was my last shot at remission from my rare, autoimmune kidney disease: a condition called nephrotic syndrome.
If I couldn’t control my nephrotic syndrome, it could lead to kidney failure. Kidney failure meant a life spent in the dialysis chair or, if I was lucky, a transplant. But with nephrotic syndrome, transplants are risky. Oftentimes, the immune system will just attack the new kidney, and then it’s back to square one.
Bottom line: the Rituximab infusion had failed. I had already tried every other viable treatment option. I was only 22, and I felt like my life was over. It had taken a full year since my diagnosis back in February 2019 to get approval for the infusion. I had never worked so hard for anything in my life – jumping through hoops to find the right doctor to prescribe it and fighting for insurance coverage. It had all been for nothing.
While the nurses administered allergy medications, I recalled the day my nephrotic syndrome journey first began. My legs had swelled up like hot air balloons after a weekend road trip, which prompted a terrifying Google search. I called my dad.
‘Dad, I looked up the swelling and the results said…’ A sob escaped my throat and caused me to pause before I continued into the phone, ‘I have either heart failure or kidney failure.’
I waited for my dad to respond. Shivers traveled down my spine as I lay on my college apartment bed with my legs up the wall, letting the tears silently stream down my face. Everyone always says never to look up symptoms on the internet because you’ll be told something is horribly wrong when it’s probably nothing. But I couldn’t deny the fact this time was different. I reached up to firmly poke my ankle that lay against the wall and watched my finger leave a deep crater in my skin.
‘I mean, if you really are worried, just go to the emergency room,’ my dad responded.
‘No, I can’t because what if it’s nothing?’ Some mild ankle swelling began the previous year and a trip to the emergency room had, indeed, brought up nothing. We decided I’d call my dad’s family friend, a physician at Mayo Clinic, to get his perspective. He was a specialist in swelling, coincidentally.
‘Well, it could be a million things,’ he had said. ‘You would need a proper examination to determine exactly what. But keep in mind, you’re a healthy and young 21-year-old. While it could be kidney or heart-related, chances are it’s nothing.’
I looked down at the crater, still holding its form in my ankle. He was right in that the odds should have been in my favor. Unfortunately, I had a feeling this time I was part of the unlucky statistic. Since I had to be on a plane to New York for a week-long school trip in less than 48 hours, I couldn’t wait to find out. I called my mom and she rushed me to my general practitioner, where hours of blood draws and urine samples brought back life-changing results.
‘You have Nephrotic Syndrome,’ my doctor told me. ‘You need to go to the hospital right now. Your kidneys aren’t working properly.’
Turns out, my immune system was attacking the small filters in my kidneys called glomeruli, causing them to leak protein and sometimes blood into my urine – things that should normally stay in my body. Low protein levels in your blood cause water retention. Hence, the strange swelling I was experiencing.
Despite the turn of events, I still went to New York. To this day, I couldn’t tell you what we did on the trip, though, because my mind was on another planet. I had gained 15 pounds of water weight in a day and could barely fit into my rigid, business professional attire. I had no idea what nephrotic syndrome was, so I played it safe and avoided cocktails each night while my classmates clinked glasses. I opted for a veggie wrap when everyone else treated themselves to burgers. My body was so swollen I hid from photos and I even had a stranger tell me they ‘admired that I didn’t care about my appearance.’
During a ride on the subway, I was wearing compression socks to see if they would help the swelling, but the socks cut off my circulation. I couldn’t walk because my legs were numb, and I was dizzy and lightheaded. In the middle of the crowded train, my classmates had to work together to hold me up, take off my shoes, roll my pant legs up my severely swollen calves, and rip off the compression socks, which were drenched in sweat.
On that trip, I learned my first three lessons in nephrotic syndrome I would have to get used to. 1) feeling embarrassed about being different, 2) being left out, and 3) having a negative body image. I’ve had to suffer these three hardships every single day since then.
Once I returned home, I had a biopsy of my kidneys performed. It was supposed to diagnose me with a specific disease, but that wasn’t the case. Several top doctors analyzed my results, and they all came to the same inconclusive conclusion: I was showing markers for three different kidney diseases and I didn’t really classify as any of them. All the doctors could tell me was I was in the early stages of the disease. There was no understood cause as to why I developed it, and I’d likely have a harder time responding to treatment.
Long story short, not only did I have an extremely rare disease, but my specific case is even rarer. It’s possible I’m the only one with my exact ‘variant’ of nephrotic syndrome, whatever that may be.
Nephrotic syndrome has no FDA-approved treatments, let alone a cure. Doctors borrow a handful of immunosuppressant drugs from other diseases, but no one knows what will work from one person to the next. I had unknowingly joined a science experiment where I was the test subject.
I wasn’t about to go in blindfolded, though, so I performed my due diligence and searched for answers on what I should expect. Because nephrotic syndrome research is poorly funded, the studies online are limited. I had to find a novel way to find answers for myself. I discovered a wealth of information lay in a couple of Facebook groups with a few thousand members from across the globe. I spent hours each day scrolling through these patients’ experiences, documented in posts and comments. I quickly learned the default treatment protocol, the side effects of various medications, and changes in lifestyle I’d have to make.
What left me particularly unsettled were the horror stories patients had shared in regards to most of the treatments. Turns out, the medications are often worse than the disease itself, except for one option that appeared to me like a miracle drug: the Rituximab infusion.
‘There are all these patients out there achieving long remissions with virtually no side effects,’ I told my doctor. ‘It sounds like a perfect option. I definitely want to try this.’
‘I’m sorry, but we can’t,’ my doctor told me. ‘Insurance won’t approve it.’
Turns out, my treatment wasn’t dictated by myself or my doctor. It was the insurance company in control of my fate. Rituximab costs nearly $20,000 a dose and all the other drug options are just tens to hundreds of dollars. Therefore, there was an ordered checklist of drugs I’d have to try per insurance’s willingness to pay, and Rituxan was last on that list.
Cue the year of suffering on poisonous medications. I always felt sick and tired. I spent all my days on the couch watching life go by without me. My friendships and hobbies faded away. My body was always changing – from weight loss to weight gain, severe aches and pains to none at all, hair growing in weird places to hair falling out in clumps… the list goes on. Every time I took a pill, I’d get teary-eyed because I knew how much physical and mental pain it was going to cause me.
I think what scared me the most during this year of drug trial and error was I lost sight of who I was, both physically and mentally. I lost my spark, my joy for life, and fulfillment from pursuing my hobbies. Every night before bed, I would look in a mirror and the person staring back at me was unrecognizable.
For better or for worse, I ended up checking off every drug on the list leading up to Rituximab. As my biopsy had predicted, I was not fully responding to any medication thus far. I was still convinced Rituxan was going to be my miracle. I’d finally be done with nasty side effects and done with this disease.
Fast forward to the present moment. Here I was in the infusion chair, being pumped with steroids and fluids to counteract the severe reaction my body had to Rituximab. While this drug is miraculous for so many patients, unfortunately, for me, it was the most poisonous medication of all.
At this point, I wasn’t sad… I was angry. Angry at the fact my rare disease was poorly researched, that a broken healthcare system dictated my course of treatment, that debilitating drugs cost me the enjoyment of my first year out of college, and that I couldn’t even put a name to my disease because of my lack of diagnosis.
I was done letting outside forces be in control of my health journey. It was time to take matters into my own hands and make my own decisions. No more insurance battles, no more painful drugs. Just me listening to my body.
I knew simply suppressing my immune system hadn’t been cutting it, so I had to dig a little deeper and figure out what was causing my immune system to attack my kidneys in the first place. I recalled a study my doctor had shared with me a little while back, linking nephrotic syndrome and the immune system to gut health. I logged into Amazon and purchased a gut health test. When the results came back, they revealed an unhealthy relationship between my gut and my immune system.
From there, I launched into hours upon hours of gut health research and armed myself with the following:
1. A nutritional functional therapy practitioner (FNTP): someone to guide me in terms of diet, supplementation, and lifestyle.
2. A book called ‘Stopping Kidney Disease,’ written by a nephrotic syndrome patient who also didn’t respond to treatment, and figured out a way to achieve remission through diet and lifestyle.
3. A book called ‘Fiber Fueled,’ written by a gastroenterologist, about gut health and how a diet high in plant-based fiber can help with autoimmune disease and general health.
4. A life coach: I’ve been seeing my life coach for a while, but she continues to help me make sound and informed decisions while keeping my health a top priority.
5. More Facebook Groups and the Instagram community: a way to connect with other kidney warriors also battling nephrotic syndrome and/or pursuing a natural healing approach.
Before I launched into my plan, my doctor called me in March with an idea to try one more experimental medication we had disregarded previously, since it was very similar in nature to another drug I had not responded to. I decided to give it a chance, an immunosuppressant called cyclosporine, knowing if it was painful, I could go off of it whenever I wanted.
While this medication has not brought me to remission, I have had next to no side effects, and it is giving me the boost I need to buy extra time for my kidneys while I pursue my gut health experiment.
In July, I officially started my gut health journey. So far, it has been four long months of hard work and discipline. I have been experimenting with diet, taking special supplements, exercising regularly, and engaging in lots of rest and self-care. Now, in October, I can excitingly say my bloodwork indicates I’m closer than ever to remission. I’ve been lowering my cyclosporine dose and still watching my numbers creep in the right direction. Above all, I have been feeling the best I’ve ever felt in my entire life.
Not only have simple dietary and lifestyle changes helped my disease, but they’ve improved every aspect of my life. The biggest ‘side effect’ of all of this is I feel extremely healthy. It’s ironic because my medications made me feel like I had the never-ending flu. Currently, I have lots of energy, no digestive issues, and clear and vibrant skin. I’m back to pursuing all of my hobbies and full social life. I’m using this newfound energy to actively take part in several nephrotic syndrome research initiatives and volunteer with patient connections programs.
I have made it my goal to advocate for better nephrotic syndrome treatment options, and encourage research that explores gut health’s relationship to nephrotic syndrome and lifestyle changes that can improve outcomes. My experiences have inspired me to document my journey on Instagram, and I am preparing to launch a blog to share my experiences more in-depth.
I expect the road ahead to have its bumps, but I am confident I am on the right path to healing. When I thought my life was over when the Rituximab infusion failed. It ended up being just beginning. So many nephrotic syndrome patients are stuck in an endless cycle of painful immunosuppressants, and it is my hope a combination of research for better treatments and advocacy for diet and lifestyle will bring about a better future for us.
While there is no ‘one-size-fits-all’ treatment for this disease, I want nephrotic syndrome and autoimmune disease patients to know they should never be worried to speak up and self-advocate in their journey. It is not worth it to settle for a drug that leaves you miserable. Lastly, I would encourage patients to not overlook diet and lifestyle changes as a valid form of treatment. Maybe it works, maybe it doesn’t, but the only side effects are a healthier and happier life!”
This story was submitted to Love What Matters by Nicola Kaplan. You can follow her journey on Instagram and her new blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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