Stacey B.

In 1976, at the age of 5, I was diagnosed with childhood nephrotic syndrome. Shortly after, we moved and the pediatrician, after my first or second relapse, sent me to Yale-New Haven Hospital to a pediatric nephrologist. After a lot of testing, he let the local pediatrician treat my relapses. In 1979 we moved to Texas, and our family doctor soon sent me to Children’s Medical Center in Dallas for more testing. I continued to be treated with steroids for relapses. Eventually, relapses were further apart, maybe twice a year, and around age 13 they stopped completely. From ages 5-12, I was treated solely with steroids.

Then in 1990, I had what they thought was a relapse. My mom took me to her nephrologist, and he did a renal biopsy. We don’t remember the results or his recommendations, and my records have since been destroyed. Ages 20 to 48, I had no relapses or illnesses. During 2018, I started noticing pitting edema on my shins at the end of the day. I figured it was probably just normal aging stuff, though it was a little worse after a long flight, and it never seemed to truly go away. Around Labor Day 2018, I had terrible pain in my side and back of my shoulder especially when breathing deeply. I put up with it a couple of days, assuming it would go away. I didn’t have any other symptoms. However, after a few days of no sleep, because barely reclining caused agonizing pain, I went to an urgent care clinic. I had no other symptoms.

No cough, no congestion, nothing else. After x-rays & an electrocardiogram, the doctor there said it might be slight pneumonia or I injured my ribs because it hurt more when I twisted. I was prescribed an antibiotic & a Medrol pack.

A day or 2 later, the water retention frightened me, and the pain grew worse. Sleep was a distant memory, and any attempt at it had to be sitting up and leaning forward. I made another appointment to see my doctor because I was concerned it might be kidney related due to my mom’s history. My mother had childhood nephrotic syndrome from ages 18 months to 5 years, focal segmental glomerulosclerosis FSGS, dialysis, and a successful kidney transplant. I went from sweating buckets every day, to barely moving. I figured that the edema was a coincidence. The doctor said the water retention was only a side effect of the steroid, but ran a blood test to look at kidney function so she could prescribe a water pill. I asked if a urinalysis would be helpful and she said no, that only…

blood tests show kidney function. Needless to say, I was glad to know my kidneys were “functioning properly” and looked forward to normalcy. After a few more days of more pain and zero sleeping I saw my doctor again. After another x-ray, she guessed it was pneumonia, and treated me with another antibiotic. It was months before I could recline even a little without pain, and the water retention never went completely away. It was a struggle to get back to running because of the extra bulk in my legs and the time away from regular exercise. I did start running again to try to rid my body of the excess fluid.

I started to wonder about the daily water retention and it just felt wrong. This cannot be normal. So, I tried some things to see if I could affect it. I tried several days with no salt, fasting, nothing but water, and I also tried a high protein low carb diet, because in the past, this diet always caused me to initially lose water weight. None of those made any difference, so I decided to bother my doctor about it again at my next check-up.

In the meantime I kept searching “water retention in adults” and finally came across Adult Nephrotic Syndrome & Minimal Change Disease. As a child, for me, the water retention was most noticeable in my face, so I never made the possible connection.

When I went for my check-up, I told my doctor my suspicions and asked if they would look for low protein in my blood work and high protein in my urine. However, when her office called me with blood results, they said everything looks great, but I ought to eat more protein. I asked how the urinalysis looked and didn’t hear back for quite a while. I finally received a call saying there was protein in the urine and to come back to leave another sample. At that point, I knew I needed to see a specialist, and I was tired of doing all the work. I did not go back.

Thankfully I didn’t have to wait months to see the nephrologist. My suspicions were correct, and I found a great doctor who listens to me. My biopsy in February 2019 showed MCD minimal change disease, and I’ve been on the relapse roller coaster and the ever changing, up & down myriad of meds ever since. However, I know I’m one of the lucky ones, as I haven’t needed to be hospitalized, I generally respond to meds, I’m able stay active, and have mostly
good days.

Do I struggle? Yes! However, finding NephCure and Rare Kidney Disease FaceBook groups saved my sanity and let me know I am not alone.