Membranoproliferative Glomerulonephritis
Membranoproliferative Glomerulonephritis. Try saying that three times fast. I can’t even say it once! Usually the first thing that people ask me after telling them I have kidney failure is… “What caused this?” and I routinely answer, “I had a genetic kidney disorder that got worse.”
Prior to having end stage renal disease (ESRD) aka kidney failure, I was diagnosed with Membranoproliferative Glomerulonephritis also known as MPGN. As I have expressed before, the day I found out I needed a transplant was probably one of the worst days of my life, I felt sad, lost, angry, depressed, anxious, and so much more. However, the experience of getting diagnosed with MPGN was very different than being diagnosed with kidney failure. I felt more surprised than anything else. One day I was, what I thought, a healthy 12 year old girl going through her awkward middle school phase and then the next I was a 12 year old girl sitting in the emergency room surrounded by a dozen doctors. Before I jump into the story of how I was diagnosed with MPGN, let me do my best to define it for you
According to the internet…
“(MPGN is) one of a group of conditions called glomerulonephritis
, where the immune system damages the kidney.
People use slightly different names for the same condition. Membranoproliferative is the same as mesangiocapillary. nephropathy, nephritis or glomerulonephritis are all used, but they all mean the same.
The name of the condition refers to the appearances of a kidney biopsy under the microscope. The glomerulus, the filtering unit of the kidney, is about the size of a pinhead. It is made up of membranes (which are capillaries that filter the blood), and a supporting structure called the mesangium. In this condition both the membrane and the mesangium are affected, and the mesangium shows signs of proliferation. Hence the name/names of the condition, which is distinct from other types of glomerulonephritis where only the membrane or only the mesangium are affected.”
Now you either completely understood all of that, or are like me and needs someone to translate. Basically it’s a condition that effects the kidney’s filtering system. In normal kidney function, the kidneys filter out toxins however, with MPGN the filter is damaged and things such as protein (which isn’t normally filtered out) gets through the filter and leaves the body. The major symptom of MPGN is the loss of protein, which causes water retention, swelling of the face, arms, or body, high blood pressure, and/or high cholesterol. Now that I’ve gotten all the formalities out of the way, let me tell you about being diagnosed with MPGN.
I was in middle school and for a few days I would wake up with really puffy eyes. I assumed this was due to allergies. Allergies to what exactly? I don’t know, but I assumed it was something in the air. I went to school, and my teacher had noticed that my face was really swollen and became concerned. So like a good Samaritan she was, she told me to go to the nurse’s office. I dreaded leaving the room in the middle of class in front of all of my peers. Frustrated and embarrassed I walked to the nurse’s office. The nurse ended up telling me that I had to get picked up and go to the doctor’s office to get my swelling checked out. Well, I went to the doctor’s and he told my mom and I that my swollen face could be due to allergies. He gave me some medication to take and told me that the swelling should go down in a couple of days. Soon enough, the doctor was right and the swelling in my face reduced, and I was back to normal. When I got back to school I went to the nurse’s office to proudly show her that the medicine worked and I wanted to thank her for helping me. I was pretty excited to show her that everything went well, and she gazed over my face and quickly checked my ankles. In my head I was thinking, “Why are you looking at my ankles and not at my non-swollen face!?” She saw that there was still severe swelling in my ankles and told me I had to go back to the doctor’s office. As you would imagine, I was extremely frustrated because I thought the nurse was overreacting and that the swelling would go down over time. In the end, she called my mom and I had to leave school once again.
I went back to the doctor’s office that same day. He was confused to why we were back and we explained to him what my school nurse said. Apparently, he wasn’t aware of the swelling in my ankles and said that this could be a sign of kidney issues. Suddenly I went from what I thought was showing symptoms of allergies to showing symptoms that were related to something more serious.
My doctor referred me to USC’s hospital for women and children, where I would sit in the emergency room waiting all night to be admitted. I was with my mom at the time, and she was just as confused as I was, to be honest we just wanted answers. After a few hours, I finally met my nephrologist who I would come to know really well. My case was so severe and unique that they had one of the top nephrologists, who rarely took new patients, at USC take my case. He came into the room, and was really comforting and reassured me that I would be well taken care of. He said that the progression of my symptoms were extreme and the fact that I seemed completely fine and was not experiencing any other symptoms was surprising. He explained how swollen I was everywhere on my body, not just my ankles and face. I remember he even said my ears were swollen! After my mom and I met my doctor, he would bring in interns and residents, one after another, and kindly asked if he could show me to them. The way these doctors were “ooo-ing” and “aww-ing” over me, you would think I was Beyonce. Soon after, I was admitted to the hospital where I would miss one week of school and be scheduled for a kidney biopsy to determine if this was a case of MPGN or something else. Having my first surgery was definitely nerve-racking, I was scared out of my mind! But, the surgery ending up going smoothly. I do remember waking up in pain, (yes surgery is painful, no it’s not like an episode of grey’s anatomy where the patients just wake up and feel completely fine and healed) (damn grey’s giving me false ideas). However, I will say that I spent the rest of the day sleeping away my anesthesia and it was the best sleep I have ever had.
After the biopsy, the results confirmed my diagnosis and from then on out I would have regularly scheduled doctor visits every three months with my nephrologist to manage my disorder.
Having MPGN was never life-threatening and it didn’t really interfere with my life. The only thing I had to deal with was taking a few medications and going to my doctor appointments but, even these things were hard for me. Because my disorder was manageable and something that wasn’t apparent I didn’t really tell anyone. So, many people, even some of my closest friends, didn’t know I was dealing with this disorder. My experience with living with MPGN was definitely different than living with kidney failure. Although being diagnosed with MPGN now seems minor compared to ESRD, I often look back at my experience with the disorder. It taught me a lot and exposed me to the medical world. Living with MPGN was the very first time I realized how important my health was and how important it is for me to take care of myself. I grew up with a fear of hospitals and going to the doctor’s, you would say that I was more of an avoidant patient, but having MPGN forced me out of my avoidant behavior. It made me familiar with doctors, hospitals, and needles. Further, making me slightly more comfortable with it all. Now, I can say I am very familiar and comfortable with what being a patient entails because its become a part of my daily life. In some sick twisted way I’m thankful for my daily exposure of it all because it helps me help myself and others who struggle with the same fear.
So now y’all know how and why this happened. That was much more difficult to organize and compose than I thought. I guess it’s because I’ve never really explained to anyone, in depth, my story of being diagnosed with MPGN. I’m always more focused on my story of being diagnosed with ESRD, but I’m extremely glad I got the chance to spotlight MPGN and if you want to know more about it feel free to DM questions!
Also I just want to give a shout out and say thanks to my middle school nurse who basically saved my life and my wonderful nephrologist from my competing school, Dr. Opas. There are not enough words in the world to express my gratitude for them. I am one lucky person to have had these two people put in my path. Thank you!
http://www.kidney.org.uk/help-and-info/medical-information-from-the-nkf-/kidney-diseases-index/medical-info-kidney-disease-mpgn/#whatis
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