A Quick Overview of my Nephrotic Syndrome Journey!
Hi everyone, welcome to Neph Nicki! I'll be diving into the specifics of my nephrotic syndrome experience over time, but for starters I wanted to provide a quick timeline of my journey so far so we can all get caught up to speed!
First Marker, Mild Swelling: April 2018
Mild swelling began in my ankles.
A trip to the urgent care clinic had the doctor draw some blood to test for blood clot markers.
My blood clot markers came back a little high, so I was rushed to the emergency room to have an ultrasound performed of each leg.
I was negative for clots. The E.R. doctors told me they expected these results since my swelling was equal in both legs. (Usually, it tends to be one leg that's swollen with clots...as it would be a rare coincidence to have a clot in each leg!)
The emergency room doctors told me that I was healthy and nothing was wrong. As for my swelling, I should try standing up and walking around more during the work and school day.
Second Marker, High Cholesterol: August 2018
At my annual general practitioner's appointment, I had a routine lipid panel performed.
My cholesterol came back exceedingly high.
But, high cholesterol runs in the family (my mom and brother both have it), so we all felt that this was not something unexpected.
Third Marker, Pitting Edema: February 2019
The leg swelling was mild and often unnoticeable between spring 2018 and winter 2019.
But after a weekend road trip to visit my boyfriend four hours away, where I enjoyed a plethora of cocktails, pizza and other salty snacks, my body was not having it.
My legs ballooned and I could poke craters into my ankles with my finger...a type of swelling called pitting edema.
This was soooooo not normal. A Google search led to me realize I may have a larger problem...
The "First" Diagnosis: February 2019
A trip to my general practitioner and a few hours of blood and urine tests later...and I was told I had nephrotic syndrome.
I had to rush to the hospital to undergo tests to ensure there wasn't anything super serious wrong.
The "Official" Diagnosis: March 2019
I had a kidney biopsy performed and the results were unfortunately confusing.
Turns out I had markers for three different kidney diseases (minimal change disease, FSGS, IgM nephropathy)...and I didn't really classify as any of them!
Over the next year, I had several top doctors analyze my biopsy...and even had a second pathologist pull a sample and provide a second opinion.
They all came to the same inconclusive conclusion...so to this day I still can't put a name to my nephrotic syndrome!
All I know is that 1) it is idiopathic and 2) likely autoimmune in nature (the latter of which was confirmed by genetic testing that came back negative).
My Timeline of Medications:
March 2019 - August 2019: Prednisone (includes 1.5 month taper...probably too quick, I know!)
May 2019 - Present: Losartan
June 2019 - September 2019: Tacrolimus
September 2019 - March 2019: CellCept
February 2019: Rituxan (an attempt...couldn't continue due to allergic reaction!)
March 2019 - Present: Cyclosporine
July 2019 - Present: Diet and Lifestyle Changes (I include this as medication ;) )
Long story short, I did not reach remission with any of the immunosuppressant drugs. The only drugs I partially responded to were the prednisone and cyclosporine. Long story short, I've resorted to dietary and lifestyle changes that support a healthy gut...and I'll dive deep into why I've pursued this healing path in my next posts.
Nephrotic syndrome is a very individualistic journey; one person's path to remission is very different from another's. But, my hope with sharing my experiences is that something I tried may help you, and vice versa!
Do comment below with your "disease timeline" as well. It would be an honor to hear about your story! Love you all, kidney and autoimmune and chronic illness warriors, alike! <3