It was back in 2007 during Chinese New Year that I got to know I have nephrotic syndrome. This is merely 2 years after I was called to the Malaysian Bar. Looks like my life has not even started, it has started to crumble. Nephrotic syndrome in a nutshell means the inability of the body to keep protein. This is an autoimmune problem which means there is no cure hence they call it a syndrome. Either your body heals itself or you control it through medication by supressing the immune system. 

I came to realise this after my leg was swollen and I can no longer wear my normal sized shoes. I am thirsty all the time because my body has went haywire. First I thought the swollen feet is a symptom of deep vein thrombosis where the blood circulation is affected by long hours of sitting resulting in the swollen feet. This is common for passengers of long haul flights. But deep vein thrombosis is pretty mild and once the blood starts circulating again, the swelling will go off. 

![nephrotic-vs-nephritic.jpg](https://steemitimages.com/DQmTcEhce4p4yaX4p6aUQhCMTVpeDyiDPCoRPn4R99DdXcr/nephrotic-vs-nephritic.jpg)
<a href="https://www.google.com/imgres?imgurl=https%3A%2F%2Fucsfmed.files.wordpress.com%2F2015%2F09%2Fnephrotic-vs-nephritic.jpg&imgrefurl=https%3A%2F%2Fucsfmed.wordpress.com%2F2015%2F09%2F25%2Fam-renal-report-pearls-925-nephrotic-syndrome%2F&docid=2X_o7KPpW8DIuM&tbnid=Z4EIucOUSE7l4M%3A&vet=10ahUKEwjqqZ7s-afWAhVIs48KHXbSCVY4ZBAzCCYoJDAk..i&w=736&h=368&bih=604&biw=1280&q=nephrotic%20syndrome%20renal%20vein%20thrombosis&ved=0ahUKEwjqqZ7s-afWAhVIs48KHXbSCVY4ZBAzCCYoJDAk&iact=mrc&uact=8">source</a>

# TELL TALE SIGNS

Weeks prior to hospitalisation, there were signs that my body is not behaving the way it should behaved. I am thirsty all the time and I seldom go to the toilet. Even if I did, the urine would be frothy just like water mixed with washing detergent. I am able to drink 2 bottles of 1.5 litres of mineral water at one go and still feel thirsty. I would wake up with a side of my face so swollen that I can hardly open my eyes but once I am awake in a seated or standing position the swelling would subside and gravity would bring the excess fluid to my leg and that is when my leg would swell. 

It was the 2nd day of Chinese New Year and although I knew that my body was behaving funny but I didnt want to raise the alarm. But the fact that I can't go to toilet despite having so many bottles of mineral water is very troubling. It was when I almost fainted while walking, I decided to make a trip to the General Hospital. The first diagnosis was deep vein thrombosis but again they were doubtful because my blood pressure is absurdly high and they have to feed me with diuretics to remove the access fluid to avoid my arteries from bursting from the overload of fluid. 

#  BAD NEWS

After two hours waiting at the outpatient area, suddenly I was told that I have to be placed under observation and I had to be hospitalised. This can't be deep vein thrombosis. I still have my Chinese New Year to celebrate. I did not tell my parents on the day that I was hospitalised. But I could not kept it any longer when they did not see me on the 3rd day. What was initially supposed to be a few hours of observation became 3 days of full observation. They took at 24 hour urine sample from me and confirmed that my body is discharging all protein and it has to be nephrotic syndrome. The name still sounded alien to me then. But I got used to it much later. 

# FALSE HOPE

The first thing that any sick person would encounter is the initial shock. The refusal to accept any diagnosis to be true. It was like only yesterday when everything seem so normal. I was told that after one round of steroids, I would be fine and my body would reset its function. Well, I though maybe my body just need rebooting and after that I would be fine. A little steroid won't hurt. 

I was sorely wrong. It wasn't a little steroid. I was fed 12 tablets of prednisolone (steroids) which is the maximum allowed by my weight. I didn't knew what to expect. Well, I had some white hair back then, it became black again after taking preds which is what they call the steroid. Didn't seem it was harmful. The protein discharge were under control. Looks like its working. But at the same time, my body was suffering from the drug. My weight increased, my face was round as moon (which is a common symptom faced by people who consume steroid, its called the moon face syndrome) my skin started thinning and I start to have stretch marks. 

![Screenshot_20170916-032903.jpg](https://steemitimages.com/DQmXeyoixxbF51AV45dkTQbRUK6CtWkWC1BbR4PpkttPBCr/Screenshot_20170916-032903.jpg)
(My face all puffed up and I am not even able to button my top button)

It was quite hard to accept. I was a very active individual. I play lots of sports. I am able to do 50  push ups without much fuss. But steroids has deprived me of that. I am not able to even do 10 push ups. That was when I realised that steroid affects the limbs. So, I am pretty weak and my muscles would go into spasm every now and then if placed in awkward position. 

# NIGHTMARE DIDN'T END THERE

The worst wasn't over. The false hope that one round of steroids would reset my body system as a false hope. After quitting steroids by slowly tapering down it took my body only less than 1 month before starting to show the same symptoms all over again. I did a biopsy and it was confirmed. I am a true blue nephrotic patient. The only thing I can rejoice is my decision to use the public hospital which has been quite easy on my wallet. The entire ordeal inclusive of medicine, hospitalisation and all other costs has not exceeded RM2,000.00. 

I became weaker day by day because of steroids. I can't no longer work like normal. So, I left my job. I stayed home and hopefully things get better. Each time after I stopped taking steroids, the problem woulld manifest itself, but like all stupid doctors they tell you, 'well at least you are not steroid resistent'. Well, arsehole, I am not steroid dependent! I need steroids to keep my problem at bay. 

# TAKING MATTERS INTO MY OWN HANDS

I had no choice, at the rate it is going, my body is suffering the most extreme punishment. I had to make a decision. I spoke to my doctor who is a nephrologist, an expert in the kidneys. Well in a very unsympathetic tone, she said, 'you think you are smarter than a doctor?' If you don't take you have only 2 months to live. Your vital readings all will skyrocket. I was thinking at least if I have 2 months I have my dignity for 2 months before finally calling it a day. 

I have to make a decision, either find an alternative medicine which is actually more toxic than the steroids which I am currently taking or leave it to His hands. I took a leap of faith, I cease all medication. The first day, I could not leave my bed. My body swelled up and I was extremely lethargic. Looks like it won't take 2 months. It will be faster than that and I am going to meet my Maker. 

I thought it was a bad decision. This was a decision that I took without telling anyone at all. My parents thought I needed the rest hence they did not disturb me. My health tumbled downhill and on the 4th day, it started to get better. Bloody chicken arse, I was suffering from withdrawal symptom from the sudden stop of preds. 

That was when I realised, perhaps He had given me another shot at life. I did not recover from my condition, but it has been kept under control. I tried buying health insurance but I had been rejected countless of times. The insurance company refuse to even increase the premium and took me to be a very risky subject which is almost likely to claim a bomb from them. 

This is me today, actively participating in competitive sports at the novice level. So, if you doctor tells you your life will end, you have to confirm this with Him up there to see if it is true. 

![table tennis.jpg](https://steemitimages.com/DQmaAxH631Z6krXaAG5a1mTAx57WmQnAHsRfe1vn6tA2Yax/table%20tennis.jpg)
(me playing competitive sports at novice level in 2016)

@crazybgadventure and @suicidalviral from the unmentionables checkout their posts.