“When I was 10 years old, I remember being at a family gathering and feeling absolutely horrible. For the life of me, I couldn’t figure out why I wasn’t feeling well, but I just wanted to feel better. The first sign that I noticed as a ten-year-old little girl was the puffiness around my eyes.
My parents started treatment with allergy medications for approximately a week, but as the days progressed, I began to feel worse. I noticed swelling all over my body, and I also noticed that I couldn’t urinate as much as I usually would. My mother then took me to my pediatrician; I still can picture the puzzled look upon her face when she examined me. She explained to my mother that this was far beyond allergies, and that she should take me to Le Bonheur Children’s Hospital in downtown Memphis.
After seemingly endless tests and blood and urine samples, one of the pediatric nephrologists came in and explained I had Nephrotic Syndrome.
He told us that this was a very rare disease and that I would need a kidney biopsy to determine what form I had. As a little girl, I had no clue what any of this meant.
The doctor made sure to immediately start me on a high dose of Prednisone (steroids) and Lasix (water pills) to help my kidneys get into remission and drain some of the fluid out of my body. The Lasix worked—I was up the majority of the night urinating!
The next day, I was scheduled to have my kidney biopsy. I was terrified—all I could think of was the huge needle going into my back. As the time drew nearer, my heart felt as if it was about to explode through my chest. Teddy bear in hand, I was taken back to the operating room.
The doctor told me to relax and that I was going to be given some “happy medicine.” The next thing I knew, I woke up back in my hospital room. I was in a bit of pain, but it wasn’t as bad as I had imagined.
After being in the hospital for almost five days, I was still receiving steroids daily. I began to notice my appetite increasing, and I later learned that this was one of the common side effects of Prednisone.
A few more days went by, we discovered I had Minimal Change Disease. Nephrotic Syndrome can be a very tricky disease, because everyone is different, and we all respond to medications differently. For me, the steroids were a go! I was able to take the high-dose steroids partnered with blood pressure medications (due to the steroids increasing my blood pressure as another side effect) and Lasix for the fluid.
After being in the hospital for a month and a half, I was finally able to go home and continue my treatment. I was so happy to finally be going home and going back to normal. Little did I know, this was only the beginning.
Fast forward to my sophomore year of high school. I remember being at after school band practice and being in so much pain. My upper back was hurting me on the left side, and I was very short of breath. I managed to get through the entire practice, but I knew something wasn’t right. I got home that night and I didn’t even want to eat; I sat straight up the entire night, just breathing. I remember crying all alone, thinking “I don’t know what this is, but I need to seek some kind of help.”
My mom took me to the emergency room the following day, and they told me that I had pneumonia. They didn’t check anything concerning my disease at all and sent me home with absolutely nothing. When we got home, I still couldn’t even hold down water!
My mother had had enough and called my father from out of town to take me back to the hospital in Memphis for another opinion. They rushed me to the back and began testing immediately. One test I couldn’t even do, because it required me to lie down flat, and I was in too much pain.
I cried all the way there and while we were there. I really broke down when a team of doctors came swarming into the room, asking my father to leave and saying that they had to start treatment right away because my case was very severe. I was only 15 at the time.
I remember hearing the words ‘pulmonary embolism.’ I was puzzled, but later found out that I had a blood clot in my left lung.
They had to begin treatment right away because this was life-threatening. I was placed on a ventilator for about a week, because one day I was trying to get up and blacked out.
There’s not much more that I remember about that experience, but the doctors told my parents that I was very lucky to be alive. Looking back, I am beyond grateful and I understand my purpose.
More time has passed. I am now 22 years old, and I look back at all of the experiences that I have had with this disease—the good and the bad. It may sound crazy, but I wouldn’t change anything that has happened to me. Having Nephrotic Syndrome has not only helped me to grow into the person I am, but it’s also helped me to appreciate life. I know from experience this disease is NOT easy at all; it can be painful and take a huge toll on you and those around you mentally, physically and emotionally.
Often times people assume that just because you may be in remission or back to normal physically, you must also be okay mentally and emotionally. But I’ve battled with depression because I felt as if I wasn’t normal.
I’ve had to miss tons of school days, my parents have had to miss work, I’ve had to try different medications through trial-and-error, I’ve had to give myself blood-thinner injections, and recently I’ve had to start Rituxan infusions—this has been a rollercoaster.
Living with this disease is very hard because you always have that “what if,” or that fear that you’ll relapse and have to go through it all again.
It’s a shame to say, but I’ve had doctors not even know how to treat me properly, and this is one of many issues that needs to be highlighted. This is why I am taking a stand: to be a voice to help others who may not feel comfortable sharing their stories. Hopefully me taking this stand inspires so many others to share their stories as well.
I hope whoever reads this finds some kind of positive message and holds on to that for hope. We are all in this together! A saying that I came up with myself and live by is this:
“While we all have something ugly that we go through, we must find the beauty in it and allow it to shape us into the person we are destined to be in life.”
So, no matter what you may be going through, just remember that we all have something ugly, but it’s up to us to bring out the beauty. What’s the beauty in your story?”
– written by Keyaira Sanders