Waking up after a long sleep of negativity......

I'd like to say that I've always been positive about my lot in life but I haven't been, not always. I have episodes of denial and depression where I'll keep questioning God, "why me?". For those that are new to my blogs, allow me to explain : I have SLE, Lupus, as it's popularly known and it has cause my ESRF (end-stage renal failure), in other words, I now require dialysis for the rest of my earthly life.

I know that I've drove many people crazy with my "why me?" diatribes. I've always been envious of my old classmates who have gone on to successful careers, marriages that have double incomes with property (houses), cars etc. Things that I currently don't have because I'm finding difficulty to secure employment.

I'm ashamed to say that I have a very negative view of myself : a woman in her 30s, still living at home with her parents, without a job, and without functioning kidneys. I've always felt like a big, fat failure until tonight, after reading a story from "Chicken Soup for the Soul : Think Positive" by Toni L. Martin.

In this story, Toni talks about her late daughter, who also had SLE. But unlike me, she had it worse, at least I'm not in pain or in hospital. My life is actually pretty normal except for the fact that I visit a dialysis center 3 times a week for my treatments. Toni's daughter, Amanda, had to have dialysis every night for 10 hours, and had to be hospitalized towards the end of her life. I'm not sure whether she was in pain towards the end of her life, but compared to her, I'm can be considered pretty fortunate.

I have 4 dialysis-free days that I can do whatever I like in, merely because of the fact that I'm not employed like all my other friends. I have a confession to make, I've always wanted to be a published author. If I had been completely healthy, I would probably be working myself to an early heart attack in a stressful IT job (what I qualified in, I have a degree in IT).

Now, at least I have to free time to try writing some pieces and get them published. Which is exactly what I'm going to do from now on. Yes! I'm now a full-time author! I will not complain about my life anymore! I feel as if God has reveal His purpose for my life tonight! And I'm so happy I can almost burst from the joy I feel in my heart! I'm Free! I'm free to write!

I've always wanted to write children's books. And now, I have all the time in the world to indulge in my passion of writing, including this blog! Actually, this blog is just a start, a start to get me into the discipline of writing anything, anything that occurs to me.

My heart is bursting for joy at this moment! I finally have a purposed in life! After wasting 6 years in the deep slumber of negativity of moaning and complaining, I've finally 'got it'!

I must! I must! I must control my fluid intake!!!

After countless warnings from the nurses about my fluid intake (read : ice-cold water) and spending about 3 to 4 months at the top of the heaviest patients list, I've finally decided to get serious with myself and not take my good health for granted.

You see, dialysis patients like myself can't afford to keep extracting 4 kilos every time we dialyse. It will weaken our hearts because our hearts have to work harder, the more fluid is extracted from us. In most dialysis centers, the maximum that can be extracted is 4 kilos. So, yes, I'm a very naughty girl!

I used to be a good patient, I would only gain 2 plus or 3 plus kilos every time. I don't know what's got into me, I guess I was thinking : "What the heck! Everyone dies sooner or later, I might as well have a good time drinking ice-cold drinks in this hot climate!". Which is of course, very wrong and foolhardy of me.

I guess that after being on dialysis for 6 years, I'm beginning to get a little over-confident of my seeming good health and problem-free heart and also I might be having a death wish because I'm a little sick of being a dialysis patient. Imagine being stuck to a machine for 4 hours 3 time a week with one of my hands immobile (the hand where the dialysis access is, the hand that connects me to the dialysis machine).

True, I've finished many good books (my own and the library's) during dialysis treatments but I keep thinking, there has got to be more to life then this! I mean, I can't even get a regular job like a regular person because which boss likes it if his/her employee has to get off work early 3 times a week?! I'm still looking though........I'm sure somehow somewhere I'll find a good job that will take into account my limitations as well as my talents and qualifications.

In the mean time, I just have to keep applying, praying, hoping and keep a positive and hopeful attitude. And most importantly, if I want to live longer, to control my fluid intake...............

Another 2 have left us...........

After that middle-aged gentleman landed in an ambulance that evening, everyone wondered about his fate, about whether he will pull through and continue living while on dialysis treatments like the rest of us. He was in hospital from that evening till now............until, Tuesday night, when he answered God's summons.

That's right, he has left us. But then we (the rest of the dialysis patients in the center) kind of expected this because he was feeling poorly for the last few weeks he was undergoing treatment. In addition to that, his arm access has collapsed, that means he can't dialyse through neither of his arms anymore. His temporary neck access also got clogged up till his face was bloated.

Because of all that, he was dialysing through his thigh, which isn't very hygenic, especially for a man as it's near the organ where men urinate...... Needless to say, he was one unhappy man!

Like I said, we expected news of his death anytime, and the fact that he has hung on to life all this while is already some sort of a miracle, given his health complications. But he is not the only one to leave us...... An elderly lady who is a paragon of fluid control, and was seemingly healthy left us on Monday evening. Just about a day before this man.

This lady's death was totally unexpected. Like I said, she's one of the better patients, someone who really watches her fluid intake (even I have trouble with that!), she usually extracts at most 1.8kgs, which is very good for a dialysis patient. I usually extract more that 3kgs! (I'm so ashamed, compared to this Aunty!).

In addition, this old lady doesn't have any heart problem or any other problem, though she's above 80! Sure, she needs to be pushed in a wheel chair because she can't walk now and can stand only a short while but hey, she's above 80! Her death was a big shock to us all!

Another old lady's arm access has also failed, so she has to go through Peritoneal Dialysis. A nasty form of dialysis, where you need a catheter inserted surgically into your stomach and you pump 2 litres of fluid every 6 hours for everyday of your life. Some patients prefer that but for me, no, thank you, I'd rather stick to Hemodialysis!

So, in short 3 people have left us, 2 to go to Heaven & 1 to home treatment on Peritoneal Dialysis. I hope I never leave this friendly center until it's time for me to meet my Maker.......

Someone landed into an ambulance last evening....

Hi, I was just having my dialysis treatment as usual yesterday evening. Then, all of a sudden, someone's treatment ended, which just means he has completed his 4 hours of dialysis. But when the nurses went over to wake him (he appeared as if he were asleep), he just wouldn't wake up! Despite several nurses (they were all crowding around him by then!) shouting his name, and slapping his cheek, etc.

This middle-aged gentleman, usually goes home by cab as his children are all busy with their own lives. However, after unsuccessfully trying to wake him, everyone realized that he was in fact in a dialysis coma; which means he fell asleep during treatment and slipped into a coma without anyone being the wiser; in other words, he collapsed without anyone knowing it (including himself).

So, instead of a cab, he ended up on a stretcher in an ambulance. I will pray for him tonight. But if he doesn't make it, he will just join the rest of the people I know who's been called home to the Lord from the dialysis center.

Sure, I feel scared. If it can happen to him, why not me, I'm a dialysis patient too......

Why I'd rather be on dialysis than have a transplant.

Hi, I'm a dialysis patient. I have been one for around 6 years. I am not a good candidate for a kidney transplant because the cause of my kidney failure is SLE. SLE patients aren't good candidates for a transplant, as the SLE that caused my kidney failure in the first place just might happen again. SLE is an autoimmune disease whereby my immune system produces mutant antibodies that attacks my own organs. That, my friends, in a nutshell explains what happened to my kidneys.

A bit more about SLE, in different SLE sufferers, different organs get attacked. For some, it's the kidneys, others, the heart (which can even be fatal), some others, the skin, and some, even the brain. I have been on the renal diet for a total of 13 years, which means I've managed to stall eventual dialysis for 7 years after I was first diagnosed with SLE.

What most people don't know is, even if a dialysis patient (for argument's sake, one that doesn't have SLE) does get a successful transplant, they will have to be on immunosuppressant drugs for the rest of their lives, at the tune of USD1,000 (approximately) a month. Fine, if you're rich, but how many people are? A lot of people aren't rich enough to afford that, a lot of normal, healthy people. What more a dialysis patient who's just had a successful transplant?

The government will give aid to a person on dialysis but not a person who's had a successful transplant. That person will be treated like a normal healthy person. Hence, he/she will have to pay for the immunosuppressant drugs himself/herself. Month after month, for the rest of his/her life. Who can afford that? For the rest of his/her life? I don't know about them, but for me, I'd rather be on dialysis. It may be inconvenient but at least I can rest easy that I don't have to keep coughing up thousands and thousands of hard-earned money a year just to keep my transplanted kidneys alive!

And a lot of those drugs are steroids. They puff up the face horribly. I've been on steroids before for my SLE. And I say "No, thank you!", I've had enough of looking ugly for a long time! I'm not going to be on steroids for the rest of my life just to avoid the dialysis machine! It isn't worth it! Especially if I have to keep worrying about paying an exorbitant price month after month for the rest of my life!

Even if I wasn't an SLE patient, I would still choose NOT to get a transplant. For me, the added financial and physical stress just isn't worth it. Others in my position might think differently but this is my choice and this is my stand!

No excuses!

My weight has always been on a yo-yo trip. It goes up and down and up and down again. I have concrete proof  in the form of my dialysis records. There was a time when my dry weight (weight after dialysis) was 54.5kgs! There was also a time when it was 68kgs! My dry weight is currently 56kgs and now I'm depressed! Why can't it be 50kgs?! (my goal weight).

I'm not very tall, so the slightest weight gain turns me into a round beach ball! Okay, perhaps I'm exaggerating a little but that's how I feel whenever I see photos of myself now. My face especially is so round I feel like burying my face in the sand so no one can look at me!

My Dad keeps telling me that as a dialysis patient, I cannot exercise as intensely as a normal person. Perhaps he's right but that's no excuse for me to weigh what I weigh and to look the way I look! No excuses! No Siree! From now on, it's exercise!, exercise! and consciously making wiser choices of the foods I eat and eating less of food in general. No more desserts! And no more 'special treats' like potato chips, fries, burgers, pizza and what not.

Maybe I'll give myself a small treat of not-so-healthy foods (aka, junk) once a month, not more than that and it has be a reasonably small portion. I may not be able to exercise as intensely as a normal healthy person but that doesn't mean that I'm exempted for exercise!

I'm a fairly young adult, so it's doubly important to me to look attractive. Not just to attract the opposite sex but to make me feel good about myself and to bolster my already flagging self-esteem. I'm already very self-conscious about the scars on my dialysis arm (I can't wear too revealing clothes like off- shoulder/spaghetti straps now), so being overweight is not helping matters much.

Just because I'm sick doesn't mean I have to look sick or unhealthy, I can still try my best to do whatever I can to look attractive and to be healthy! So, Day 1 starts today! Well, bye! I'm off for my jog!

When Death Becomes More Real

I've been a dialysis patient for more than 5 years. And in these 5 years, I have experienced the death of many friends. Most of them, people above the age of 50.

You would experience a sense of detachment when you read of people dying in accidents or natural disasters in the newspapers or even if you have visuals from a TV news report. It's like a 'things that happen to others who has nothing to do with me' kind of feeling. You feel that it is not likely to happen to you and it's none of your concern, so these deaths that you read, watch or hear about takes on an unreal kind of feeling.

But when someone you personally know like a friend who undergoes dialysis with you passes away, then it brings it much close to home. It becomes too close for comfort when you think : "Oh my God, the next one could be me!". Death becomes a lot more real.

I, personally have been warned again and again : "Watch your fluid intake, you don't want to end up like Uncle A, who passed away because he was literally drowning in his lungs because he drank too much water each day!". Dialysis patients rely on their treatments to extract the extra fluids and to filter urea, creatinine and other waste products in their system as their own kidneys are no longer capable of doing that job. Trouble comes when you 'owe' the machine some body fluids per session over time. The fluids then have nowhere to go and get accumulated in the patients lungs, till he/she literally just drowns in their own body fluids, that's how Uncle A died.

I know, I have been warned again and again, not to make the mistake Uncle A and most of the countless others have done but then again, when you're thirsty, you're just thirsty, you know. You just have to drink. But I have decided to take up the challenge to weigh less each time before my dialysis treatments.

Unfortunately, I have been accustomed to drink as much ice-cold water as I want, so it's definitely going to be a challenge but if I want to live longer and not die prematurely like the uncles and aunties that have passed away, I'd better have more self-control when it comes to drinking water. No more chugging down as much cold water as I want. It's time to discipline myself! Wish me luck!