So this will be my most personal update yet…
To know more, click on the above.
1. What’s Up?
I have been living with Nephrotic Syndrome for some time now – 20 years to be exact. That’s more than half of my lifetime. I was first diagnosed with the condition when I was 4 in late December. According to my family members, they were shocked to see me all swollen during the day after my great-grandmother’s funeral. Nervous, they brought me to a children’s specialist and quickly I was referred to the Sarawak General Hospital. From the day I was diagnosed, my life and the life of my family was changed forever.
2. Are You O.K?
The first thing you should know about the condition that I am in is that I am actually fine – except when relapses occur. What is a relapse? A relapse happens when I get all swollen up like the first day I got the syndrome, with the added effects of frothy and very deep-yellowish-orangey-reddish coloration in regards to my pee. The swollen thing that I get is an indication that water is building up under my skin – edema – and when you press my skin, there would be a dent on it that would take time to disappear.
3. Could You Die Because Of Your Syndrome?
No – I hope not. The cases of deaths related to Nephrotic Syndrome is rare if not any. It’s not really something fatal. It can get worst if I don’t take good care of my diet and lead a healthy lifestyle, but the most important thing is to always, always, ALWAYS remember to take my meds.
4. Are You Normal?
I like to think that I am. My family sometimes forgets that I have the syndrome while only my closest friends know I have the disease. The doctors (when I was younger) were scared that I might have social and physical defects because of what I am experiencing. When I was a kid, my physical defect was caused by this steroid that I took. It increased my appetite to a maximum level that when I was 12, I weighed around close to 90kg and I was less than 160 tall at that time. Imagine the state I was in. But the doctors took away the steroids and I have been losing weight ever since. But now I am gaining the weight again but that’s a whole different story.
5. Can You Get Better?
I hope. There are some cases that a child grows out of the syndrome and seems to be living fine without medication and all. But I am 24 this year and I still am relying on my meds. On my recent visit to the docs, I asked her whether there was a chance for me to get better, she said that most probably I would be under a lifetime observation – which sucks.
6. Do You Think Your Life Would’ve Been Different If You Are Not Affected By The Syndrome?
I have no idea. I think I would lead a different life, a life that is more free, something less chemical and drug dependent. That would be a great life to lead I think. Not having to waste time waiting and seeing the docs, or get scared of getting into worse health situations that I am in. I am thankful though because I think with this syndrome, it has helped me – directly and indirectly – to be the person that I am today. So there is an endless possibility to this question which would take a lot of time and complexities to explore.
7. How Was Your Life As A Kid?
It was challenging if I were to look back at it. I was hospitalized a lot of times, up to a period of one week to two weeks. But somehow or rather I managed to get good grades at school but I don’t know how I did it. I ate a lot. I was fat. I ate a lot of meds. Life was tough but I pulled through, but funnily I couldn’t remember how.
8. Future Life?
Future life? I just hope that I’ll be living a life as close to normal as possible and not to rely on meds and by normal I mean not having to see the doc that much. When I was a kid, the doc asked if my p***** was functioning fine. At that time I didn’t know but now I do (haha). There was even talks on seeing the condtion of my swimmers but that’s yet to be done. So the thing I really desire for now is a life closest to a normal person who is healthy and fit and who does not have to the see the docs that much and not having to rely on meds to get by.