The Two Words that Forever Change My Life: Nephrotic Syndrome

Nephrotic Syndrome, RARE. (#) Awareness, Team Micah, Teammicahman, This is RARE. -

The Two Words that Forever Change My Life: Nephrotic Syndrome


After I gathered myself from the shock of being told to go to the nearest ER, I called my husband and explained the situation, where we were headed to. He left work (which at the time was 1.5 hours away) and met me at the ER. When we arrived, they had already received the papers from the urgent care, had a room ready and went right to work. They placed an IV, drew blood, took more urine, ran tests. We sat and waited. My mom and grandmother came to the hospital. My grandmother has always been very close to me. Around midnight, finally a dr came in and explained there was something not normal with Micah’s kidney’s. They needed to transport us to the downtown hospital where there were kidney specialists, as they didn’t have any at the hospital that we were at. Well, the downtown hospital had a fire, so we waited almost the entire night. Around 5 am, we were transported by ambulance to the downtown children’s hospital. All the while, Micah loving this experience because he LOVES emergency vehicles.  We get downtown and are taken right to a room where they had already admitted my sweet guy. More blood work, more urine, not much sleep. Around 9 am the dr came in and explained that he had something called ‘Nephrotic Syndrome’ and that they were going to be placing steroids into the IV along with an antibiotic to be sure that the steroids don’t cause a fatal stomach infection. I didn’t have much choice, as I’d never heard of this before, so we went for it. We stayed 4 long days at the hospital. Learning about this syndrome. There are different diseases associated with Nephrotic Syndrome. They diagnosed him with Minimal Change disease. There is also FSGS and a few others that he could potentially have. There is no specific treatment for this syndrome or any of the diseases that are associated. They have treatments that ‘work’ to get the patients into remission so that they stop spilling protein, but none of them were specifically created for this syndrome or any of the diseases. Then finally I hear ‘Also, there is no cure currently. We will do what we can to get him into remission and then we will have to find something that works to keep him in remission’. Can you imagine the devastation of hearing that there is no cure to some disease that your 3-year-old apparently has? The anxiety of trying to figure out what that means? I had no idea at that moment it meant that at some point in his life, his kidneys could fail. When protein is ‘spilled’ through the urine, it scars and damages the kidneys. You see, within the kidney there are the tiny little guys called podocytes. You’re born with as many as you’re ever going to get (kind of like sperm with men). They don’t regrow once their gone, and guess what happens with the diseases associated with Nephrotic Syndrome? The podocytes basically melt away when that protein spills into the urine.  

Please feel free to comment please with questions! Looking forward to helping Micah get the treatment he needs with your help!

PART ONE: The Unknown.

I’m not typically a blogger. In fact, I’m a busy momma. I work full time and teach part time online (because I love it and it takes me away from all other things going on in life, and gives me time to focus on something I love doing). Today, I’ll share a little bit of my journey over the past 4 years. It’s been nothing short of a roller coaster of tears, anger, and anxiousness. Although the tears are much less these days, the fear, and anxiety I hold will never go away.

At the beginning of the year 2016, we started to notice our little man, Micah was swelling in his face a lot. Around his eyes, his cheeks, even his belly looked a little bigger than normal. He was growing out of clothes within a week of me purchasing them. We visited his pediatrician who explained he was having seasonal allergies. We tried Claritin, Allegra and a few other over the counter allergy medication, but the swelling kept coming back. We probably were at the dr 4 times a month trying to get answers. During this time, Micah would also complain his belly hurt on and off randomly. He is a growing boy, so I thought, man this kid is hungry. Over the 2015 holiday, many family members mentioned how heavy he was, and my mom noticed his little ankles seemed a bit swollen, but because I see him every single day, it wasn’t too alarming to me. Finally, in June, his daycare teacher called after his nap time. She explained he was so swollen he could barely open his little eyes and she was concerned. She mentioned there was no fever, and no ‘need’ to come and pick him up right away but she wanted to make me aware of what she was noticing. After nap each day, he was super swollen and as he played the swelling seemed to go down. It was a Tuesday, so I gathered up work and left to pick him up. At this point, out of frustration from hearing him complain yet again that his belly hurt, I took him to a new urgent care facility that wasn’t too far from our house. I called my husband and explained that something was wrong, and I felt like no one was listening to me or my concerns. No, he didn’t have a fever, he was eating and drinking fine, he was happy most of the time, he played normally, but there were times where he just didn’t seem like his normal self. The Dr. of this urgent care listened to me as I teared up and explained that I felt no one would listen and that I knew something was wrong with my baby. He finally asked, ‘Do you think he will pee in a cup?’ … he has just turned 3 but had been trained for the potty since before he turned 1. I explained I had no idea, but I would help him, and we would make it work! We did, and surprisingly Micah loved every second of urinating in a cup… boys, am I right? Thank God he loved it because I never imagined that he would be doing it daily, and possibly for the rest of his life. The Dr. took the sample and in about 15 minutes came rushing in with paperwork to head to the nearest ER. I was in complete shock. I knew something was wrong, but did we really need the ER? He explained that Micah had high levels of protein in his urine. He explained that protein was supposed to stay within the blood stream to help rid the body of fluids, and toxins, and not escape in high levels through the urine. He did explain that when we get sick, generally our bodies ‘spill’ a little protein through the urine as our immune system fights off infections etc., but not at the high level that he saw in Micah’s urine, and not to mention, Micah wasn’t even sick or trying to fight anything else off. So we went to the nearest ER.

Until next time please feel free to comment and ask questions. I would love to start a discussion about my experience or a similar one you may have had or are having.


Use Code: TEAMMICAHMAN  and 10% of your order today will go to Team Micah's donation from RARE. to support finding the treatment Micah needs. You will also receive $5.00 off your total. 

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