It seems that every time I get admitted into the hospital, or whenever I post a photo of my forearm with dextrose all over it – it freaks people out. 😆 I admit that I very rarely talk about my health anywhere online, what more with my personal life. Most of my social media accounts are locked now compared to in my late teens-early twenties when I would carelessly tweet and post messages online and not think of repercussions later on.
I have also been asked too many times the same question of what happened to you? by several people. From friends, to people I live with, people I don’t see often, people online, even people I don’t know who think I am too young to be where I am right now. Other than that question, they’re always shocked to find out that I have this illness such a young age.
I’ve come to laugh at the reaction process of people.. first they’re surprised, and then they’re shocked.. because I am so young, and I was so.. normal! Like how can this be ever possible, you’re skinny as shit, you don’t look sick at all!
Thank you guys for the concern, I appreciate it, I really do but it does get annoying getting asked the same question over and over again. Also, people pitying you.. again and again. The latter is definitely the worse.
For the sake of these redundant questions ending, here’s what happened (but first, let’s go back to the early 90s for a
brief history of how I got here):
I have been diagnosed with Nephrotic Syndrome at an early age (3 y/o) and developed later on as End Stage Renal Disease (ESRD) as I got older as a result of my lifestyle. I can’t really explain it comprehensively in my own words but what I do know is only a very small percentage of my kidney organs work well now. Perhaps this infographic (PDF) may educate both of us: Nephrotic Syndrome Fact Sheet.
As you can see, I don’t really thoroughly research. Call it what you want: Denial, refusing to face the truth, whatever.. but yeah. 😛 *insert dramatic moment of refusing to say goodbye to my YOLO lifestyle*
Thankfully in my experience, I can still urinate. Normally, if you reach this stage, you will be unable to urinate forreal. So I feel like I don’t really have 100% ESRD yet, as long as I keep watch of what I eat, maintain a healthy lifestyle~ and don’t abuse (meaning, going back to bad habits of the previous lifestyle hahaha).. I’ll be okay.
As early as 3 years old, I was supposed to also have started the dialysis treatments but my parents weren’t happy with the idea and instead what they did was to strictly monitor my food intake and constant checkups with my doctor. In the next twenty years it worked, it actually worked, and I was living life normally, not stuck to a lifetime schedule of getting treatments every other day and missing out on what life has to offer young me.
Things changed when I got to the end of my adolescent years to my early twenties. The millenial years. I was a junior in college and everything was just too tempting not to try. I’m talking about food, silly! Since I grew up in a home with strict food monitoring, even when I was in pre-school to elementary and highschool I was so cautious of the food I eat. I’m not supposed to have too much of oily, fatty food.. meat, especially.. and it always has to be a ‘low salt, low fat diet’. In my experience, food that’s stripped from the taste we all know. Tasteless. Bland. Bah.
I also always slept on time, never past midnight. They say that sleeping late night causes your kidneys to work twice as much as they are suppose to! So the possibility of working late at night, such as in a call center, was off the list forever. This would also explain why I can’t take up regular office jobs and employment because of the overtime and stress.
When I was in college, the late nights could not be avoided. I was also not the best with time management. I slept more and spent more late nights actually working on homework, plates, projects before their deadline. I’m pretty sure that I work better late nights when everyone’s asleep!
As for the lifestyle.. I am not a smoker nor do I drink alcoholic drinks other than just trying it out (in such little amounts, I’m sure it doesn’t count for anything) but I go to a lot of gigs and concerts that end late at night or sometimes even morning. I was exposed to a lot of smoke from cigarettes too and a lot of people (both are bad for ESRD people like me because we are prone to getting sick and infections). Think of all those times I did that, it was like punishing them poor kidneys. Oop. AND I ate a lot of bad food (junk food, meat.. masarap ang bawal, eh.). Double oop, and whoops. And the worst were skipping meals, eating very little, or not eating at all. Hence, skipping the medicines I should be taking.. further punishing what’s left of my poor little kidney organs.
All that in a span of six years.. from 20 to my current age now.. (guess, lol). In the later years, I have started to cut back on my bad habits because that’s when I was starting to feel that something was wrong with me and it’s not something I can just ignore anymore.
- I was starting to feel that I got weaker every day: I didn’t wanna go up from sleeping. I was always in bed and couldn’t get up on my own, and it felt like I was going to be bed ridden (depressing to be in that state in such a young age tbh).
- I couldn’t eat as much as I want, even if I tried, because most food would leave a bad taste in my tongue and if I tried to went ahead with it I would just end up vomiting the food. I always felt like vomiting even if I didn’t eat anything. One little food that gets in my mouth the wrong way, I throw up.
- I had the worse case of motion sickness (which I never experienced before): whenever I go out and get in a moving vehicle they drove too fast and turned left or right too soon, it upsets my stomach. I get dizzy easily and want to throw up whenever something moves too fast (say I sat on a wheelchair and I was pushed back to my room) and optical illusions would make me throw up too.
- I get dizzy and disoriented whenever I sat down, the most I can be in a sitting position was 20 minutes and after that I had to be back to lying in bed. Body cramps all over. Always hungry but can’t eat a lot.
- The gradual loss of my sense of taste.
- I was getting paler every day, skinnier every day . I feel like I was on the way of looking like Christian Bale from The Machinist (as OA as that sounds, it’s true).
- Frequent headaches and jolting pain around kidney area.
- Eyesight problems.
- I was unhappy throughout all this. Sure, I was getting skinnier but weaker? No thanks.
Cutting back on bad habits during this time was a moot point because it didn’t help me at all. It was too late to do self-medication or relieving on my own now and I had to consult back a medical person about this. I was starting to fear that maybe.. it’s finally time to reconsider that treatment we have all been avoiding since I was a wee little one. The big D: Dialysis. 😐
Still in denial, I mustered the courage to go to the doctor and the first words I said were: “hey doc, I fucked up and now I’m ready to do dialysis treatments.” Jk, I didn’t say fuck to her. At the time I wasn’t thinking of what I’d leave behind (goodbye social life, travel adventures, lifestyle, everything sugar, spice, everything nice and cool) but all I wanted was to get better again. What’s there to lose, anyway, I didn’t have commitments to anyone at the moment, no work, no social life to attend to, I was at home 100% of the time and couldn’t go anywhere because I’d get motion sickness.
It was time I get back to taking care of myself
Doctor came to a conclusion that I was feeling all those things I had listed before because the creatinine level in my blood had risen up to insane levels. For our reference, 0.6 to 1.1 mg/dL is the normal level of creatinine for women, mine was around a thousand. I was able to hold that in for more than 10 months, while some people if they have reached 500 or 600 they would start fainting and it could have been worse. I think it’s because I barely do anything that’s why I was able to hold that in for a couple more months.. then again I experienced the worst symptoms ever in my life. I thought I was going to die. 🙁
So, again, the diagnosis was: Starting Hemodialysis treatment to lower high creatinine levels to manageable levels for Nephrotic Syndrome-ESRD patient. I wrote a loong post, but that’s probably the only line you needed to read to know what happened to me. 😆
She wrote a doctor’s note that I get admitted to the hospital specializing in this a week later to get started on hemodialysis, with prep up for a Kidney transplant ASAP. Excited about the latter (because, finally?) but not too happy or expecting of it because it will cost a lot and I don’t see us being able to afford it anytime soon especially because my dad started on dialysis recently (minus the possibility of a transplant) as well. Such a costly treatment that it will eat up money fast.
That’s all for now.. the hospital part of the story will be for part 2, if I ever get around to doing that.