FSGS is rather new to me, and tbh is overshadowed by um I don’t know, the heart failure and pulmonary hypertension. However, without this rare kidney disease, I would have never known I was in heart failure and had pulmonary hypertension in the first place.
Try saying Focal Segmental Glomerulosclerosis 3 times fast. I’m sticking to FSGS for short…
The symptoms that started it all
When I was in my second trimester of pregnancy, I began to have ridiculous swelling in my legs. I also had increased protein in my urine and incredibly low blood protein. It was so low, my nephrologist told me he usually sees people in ICU with the lab numbers I had. Just goes to show how people living with chronic illness their whole lives get used to feeling like crap all of the time. We never know how much sick is too sick. That is truly an understatement in my case.
Constant Leg Swelling: I mean heavy, fluctuating leg swelling. I lived in compression stockings with my feet propped at every opportunity
Proteinuria: Increased protein in the urine. At its peak, I was losing 20 grams of protein at once. That is the equivalent of 3 eggs! Normal is 0, nothing at all.
Low Albumin: This is protein measured in the blood. Mine was a whopping .8! Yes, that is a decimal before the 8. Normal is 3.4 – 5.4.
Here are some examples of my fluctuating leg swelling:
The Whirlwind Diagnosis
After I delivered Renee, I saw some mild improvements, but then things took a turn for the worst. The swelling returned with a vengeance and I was getting seriously short of breath. I contacted my nephrologist and asked if we could schedule my kidney biopsy sooner rather than later. Just my luck, I picked the perfect timing. My biopsy was on a Thursday, I was dragged to the ER on Friday (because you know, how sick is too sick) with a massive blood clot in my left lung, and by Sunday hurricane Ida was hitting my home town as a category 4 hurricane.
I’m sorry, what? Yes, I rode out a hurricane in the hospital in heart failure, struggling to breathe, and in complete shock. If this wasn’t enough, my daughter Renee was in the NICU in the same hospital recovering from her pacemaker surgery. Oh, and 2 days later we’d find out our house was completely destroyed in the hurricane when a massive tree fell through it. Was it the severe blood clot or that news that then landed me in the ICU the next day? We will never know…
Anyways, I found out AFTER THE FACT that the temporary diagnosis they gave me before the biopsy results was “nephrotic syndrome.” This means I was at an extreme high risk for blood clots. I was already on blood thinners, but had to temporarily stop for the biopsy. I had no idea this was a side effect, no idea. No medical professional properly educated me on this disease, until after it had nearly killed me. I was a new mom, with an incredibly sick child in the NICU. That was my main concern, not some random kidney disease that showed up out of nowhere.
How does FSGS affect me?
My biopsy results somehow managed to still get processed during the hurricane, and that is when I received the FSGS diagnosis – Focal Segmental Glomerulosclerosis. Your kidneys are responsible for filtering blood. In FSGS, parts of the filtering units become scarred and their function is reduced. This causes symptoms such as increased swelling, low protein in the blood, high protein in the urine, and foamy urine, among others. FSGS is the reason for my moon face and prolonged steroid use.
Managing FSGS
Prednisone has been my go to treatment for FSGS. I felt amazing when I first started. My swelling reduced drastically, I lost 20 lbs of fluid. I could breathe and live again. Then within 6 weeks the side effects started setting in. All my joy and relief came crumbling down like a crystal vase falling from a table in slow motion. Now I’m left trying to pick up the pieces to manage this disease.
Eat more quality protein
Limit Processed Foods/Sodium
avoid processed sugars
Drink more water
Limit caffeine
I’m finally weaning my steroids, but my kidneys are not liking the changes. We are back to the playbook to figure out the next step. I HAVE to get off these steroids. Thankfully, my doctor agrees.
I am fortunate that my scarring was less than 1% and my kidney function has been preserved. However, I want to keep it that way. Here are a few things I’ve learned to do to manage my levels →
As I mentioned previously, the one “good” thing that came from this whole experience was my pulmonary hypertension diagnosis. I had been having PH symptoms for years, and my autoimmune disease was the scapegoat. Unfortunately, this happens to a lot of people with PH. Imagine my face when I found out it was clearly evident I had PH through my past diagnostic echos and CT scans from the 3 years prior when my symptoms first started. Although the diagnosis of PH was scary and life changing, I am glad I finally got it because where would I be now without treatment.
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