#mpgn

Relocation is tough but finding new MDs that you feel are effective is a toughy. After four failed attempts at a new primary care doc in Southern Indiana --I decided to commute back/forth to Wisconsin (7 hr drive) to see my previous doc. Then he had the audacity to retire, leaving me crossing my fingers I didn’t get sick.  This worked for three years.  Three years....and then my luck expired. Ahhh yes...that dreaded day in mid Feb of 2017 when I was swimming four days a week, following the Weight Watcher program to a T and I woke up with a 10 lbs weight gain & inflammation like nobody’s business.  And that weight gain just continued and my weight soared up 30 lbs than my typical.   I didn’t have that new doc yet....so self diagnosis began.  You know...webMD and google searches make you a medical professional, correct?  Duh.

Wasted $450 on an allergist (all tests were negative). Next...referred by a friend to her primary care - she was a win, Dr. Roberts.  Due to the symptoms, she first referred me to a rheumatologist. Not to be rude here, but the rheumatologist, a nurse practitioner who went by Dr. Rachel (interesting that a master’s nurse became an MD overnight...) she was a nut.  All my blood testing & ultra sounds came back negative. She insisted I take Plaquinel for that “in case an auto-immune disorder forms.” Huh....? Prednisone and Plaquinel cocktail. She also insisted I was having a heart attack and sent me to a near by hospital but told me I could drive there.  (credibility down the crapper....you’re really going to send someone having a heart attack to the hospital in their own car, driving themselves? I think this falls back into the “master’s level MD” whatever that means.) I did not have a heart attack, just some inflammation in chest walls. But I did get a $1400 bill because that hospital was not in-network with my fake insurance.

Fake insurance - it’s actually a medical sharing program.  When I became self-employed, I lost my benefits and had to self-insure.  This was around the time of the “Affordable Care Act” situation. I want to know who this was affordable for? Not me. Not anyone who earned about a poverty level income.  Which resulted in the “medical sharing program.”  After 30 days of that with no improvement of my symptoms, I went back to Dr. Roberts who referred me to a Nephrologist (kidney doc). The office she referred me to thankfully, was in-network of fake insurance.  But as I’m scanning the list of doctors, I recognize a name of someone I went out on a few dates with when I first relocated.  Thankfully, that’s not who I saw, but trust and believe I would have requested someone else. Not to be rude here....but I don’t really want to share my personal health problems with someone I dated briefly.  I was matched with a great nephro that we’re going to refer to as “Woo-ster.”  He is great.  He tried different medications, told me to get off the Plaquinel immediately (well taper down & discontinue).  After testing and a biospy, I was diagnosed with Acute Membraneous Proliferative Nephritis Type 3.  This disease is a rare one that impacts Asian and/or Black males over the age of 65. As a 36 year old, white female - I clearly fall into this category. SMH. Nonetheless, after failed oral medications, he prescribed four rounds of Rituxan; a form of chemotherapy that kills off the B-cells in hopes of the body regenerating new, healthy B-cells. After the four sessions, paired with the dreaded Prednisone; I would be good to go again. 

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!

Thanks for reading!

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!

-Ivy

Source:

Care Somethings If You Have MPGN

What is Membranoproliferative Glomerulonephritis? In layman terms...its kidney disease. I call it MPGN for short. and I have been in remission for MPGN type 2 for 10 years.

I was diagnosed at 4 years old and went into remission at 15 years old.

So I am giving a shout out to all the people that helping in making me healthy again!

-God (of course!)

-The expert care from my doctors at the University of Michigan. Dr. Kershaw and Doctor  Bunchman. (I know there were so many more than that but I remember these guys the most)

-The nurses and techs that have cared for me over those years.

-My mom and dad

-My siblings 

-Dr. Iqbal, (my local physician from up north)

- my grandparents, cousins, aunts, and uncles who stayed vigil many times while I was sick.

- Aaaaaand the ambulance driver who picked me up when I was going to be late for a routine day of testing. My parents' car broke down halfway through our 4 hour trip to Ann Arbor. They couldn't afford to reschedule the appointments so the hospital sent an ambulance to come get me!

  Light Microscopy (LM)

Lobulated glomeruli. GMB splitting ("tram tracking"). Mesangial & endothelial cells profliferation.

Immunofluorescence (IF)

Type I: Granular subendothelial  and mesangial deposits of IgG, C3, C1q, C4.

Type II: Granular and linear deposits of C3 (on GBM)

Electron Microscopy (EM)

Type I: SUBENDOTHELIAL DEPOSITS. "Tram track" GBM and mesangial cells interposition. (arrowhead)