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Nephrotic Syndrome Awareness (Lyon's battle)

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Written by   2
3 months ago

Even I is not aware of this, until my youngest son was diagnosed last October 2019. I asked myself "what did I do wrong?" but, somehow there are things we really can't answer and needed to seek help for understanding.

How did it started? I needed to track every single day that I noticed something is wrong. Luckily, I make some notes every time my kids get sick, temperature, weight, over-the-counter meds I gave, dosages, etc. and so on. It all started with an eczema on his neck, his throat swells then both would subsides then again comes back. I thought it was just fine treating him with home remedies because it goes off until he started coughing and sneezing. His eyes swell and got a fever. I brought him to a private clinic and was diagnosed with "Mild Pneumonia ". We managed to get passed with it and even the swelling faded after a week of antibiotics and antihistamines. On our follow up check up the doctor gave me an advise to seek for a pediatric nephrologist opinion , she said my son might have a Nephrotic syndrome but only a nephrologist can tell.

I did a little research about this "Nephrotic Syndrome". It says it is a condition where in the kidneys are not doing it's job,it spills out protein and keeps the water in the body. The immune system is attacking healthy cells of the kidney making it not to function well. Worst of it , the person might need to have a dialysis and may end up with Chronic Kidney Disease if not treated soon. I was struck by the information, I am crying inside, asking myself what must I do I have few money left enough to feed my kids. How can I afford to have my son checked. My husband told me to wait until his next payday and put it on the priority list but somehow things really can't wait, my son swells up again this time worst than I could ever thought of. The night I was planning to borrow money from my sibling his feet were swelling and his tummy is enlarged, I really cant sleep. On the next day, he went to do his morning pee, he came back to bed and whispered to me " Mine my eggs are so big I think it going to break ."( Mine, ang laki ng iklok ko parang puputok) My heart leaped out in my hands. I asked him to show me, looking at his testes swelling like a jumbo sized egg I was frantically trembling because I have to control my tears. I told him to lay down put his feet up and make sure his head is raised with pillows. I called my elder sister sobbing as I explain what's going on , my son peeked he said "Dont cry. I'll be fine" (Wag ka na iyak, gagaling na ako). It made me cry more.

I told my eldest child not to go to school and to look after his siblings for his youngest brother is in a very urgent condition. I have to divide the my money so they could get some food and what left on me is enough to pay the fare where my sister will meet us. I was dumbfounded, and lost but I need to keep myself strong. We don't have enough money so my sister told me to go to a City Hospital (don't want to mention the name) there on the Triage a foul-mouthed nurse with a voice echoing in the Emergency room said "I am sorry to tell you this but you are a worthless and careless mother, you let your son look like this before bringing here"(Pasensya na pero napakawalang kwenta at pabaya mong ina. Inantay mo muna magkaganyan anak mo bago mo dinala dito) My sister was fuming but I told her to let it pass we need my son to get admitted but sadly when the doctor saw my son she said I need to bring him to a bigger hospital and that they don't have available bed on the Pediatric Ward.

I need to think fast and make options. I decided to try Philippine General Hospital, it's my only hope for a big public hospital. Getting there, Im holding my tears looking at the patients waiting for triaging, hoping for admission, my mind keeps on praying seeking God's strength. He answered my prayer. I can see how tired the nurse in duty at the Pediatric Triage but his compassion with patients is high. Then,and there after getting all the details he told me to wait for my son's admission. How the IV line (heplock) was set was really heartbreaking the nurses need to do and redo the insertion because the nerve breaks due to edema. His heart rate is raising and his oxygen is depleting, I was praying hard that he just have to be oxygenated and need not to be intubated. Staying at the Trauma ward for 3nights and 3days my son received his IV infusion of Human Albumin and Furosimide , was oxygenated for a day. He also have oral antibiotic to fight infection and rounds of laboratory test was done. The Nephrologist wants to send us home for she doesn't want my son to get sick aside from what he had. She said his immunity will get low as soon as we put him on Prednisone.

We've been released without paying anything (Thanks to Malasakit Center and PhilHealth) it was a relief , soon I'll be seeing my kids at home after getting the KUB utz (Kidney Urinary Bladder Ultrasound) the doctor asked. On the day of our ultrasound schedule we're forcing him to pee ( we are told to monitor his liquid intakes and output) he keeps on refusing so I brought him to the CR to urinate there I found out that his penis is swollen though his testes are much smaller. He said he don't want to see me cry that's why he tries to hide it . I told him that he have tell me everything so I wont cry. My sister and I decided to bring him to the Emergency Room, we dont want him to swell up again. For the second time around we got admitted. A doctor tried but failed to put a urine catheter because it was swollen so they endorsed us to a urologist. Upon checking the Urologist said he don't have urinary blockage but he have to have infusions and diuretics to make the water retention subsides. Staying there again but with less worries knowing he'll be fine. I'd rather worry about our debts rather than his health.

Upon getting home I told my kids all the changes we need to go through. We will be monitoring Lyon's liquid intake and output (urine). No more junkfoods, processed food,instant noodles and canned goods, candies, powdered juices and softdrinks. We will be having less salt on food. We have to monitor his soduim intake. We'll be eating more vegetables and fish. We must practice eating fruits and drink plenty of water. I am happy and relieved that they are willing to sacrifice and participate. I thank God for giving me a very understanding and loving children.

Up to now my youngest son, Lyon, is on maintenance. He have meds for lowering his blood pressure and still on steroids (Prednisone) but in a much lower dose. We still monitor his intakes of liquid and urine , his blood pressure too. We do daily protein checking by using urine dipstick.

There are kids and adults around the globe suffers from Nephrotic Syndrome. It's a lifetime battle for those who have it, they may get remission from their maintenance but are still qualified for relapses. Many of us are still not aware nor understand it. It has no cure, it's an underlying condition waiting to be triggered. Other's have no choice but to let themselves worsen and hopes for an end. Nephrotic Syndrome Warriors are needed to be heard and their condition be known specially, not all of them had the access to their medicine or the capacity to maintain the daily intakes for some meds prescribed are quite pricey. There are few organizations that are already reaching out and hoping more to follow. I really hope this does not end here and that Nephrotic Syndrome awareness be known and shared.

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