Thursday, December 2, 2010

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.......

Tuesday, November 9, 2010

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!

Sunday, October 31, 2010

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!

Saturday, October 2, 2010

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!

Sunday, May 30, 2010

It all depends on how you look at it.

You know the saying, 2 people can look at a glass of water, one will say the cup is half full while the other will see the cup as half empty? In other words, 2 people can look at the same thing but have different perceptions on the same thing. The optimist will see the good in things while the pessimist will see the bad in things.

Well, I choose to be an optimist. Even though I have SLE and am now undergoing dialysis 3 times a week, I choose to see myself as blessed. I may not be working full-time and I may not earn as much as some of my friends, but I have a pretty nice life. I live with my family and I earn enough for my own expenses. Right now, I'm trying to save as much money as possible, so I try to spend less most days.

Lot's of people will say someone is my situation has to be either depressed or suicidal but not me. I used to be depressed and negative about my situation but not anymore! What's the point of constantly comparing yourself with people more fortunate than you and whining and complaining all the time? You'll only drag yourself down and make yourself even more depressed.

I choose to be happy. I choose to be contented with my lot in life. After all, this isn't our permanent home, Heaven is. I choose to live life the best I can so I'll go the Heaven when I die. Because in Heaven, there is no Death, Sickness, Pain or Sadness. It's my choice.

Consider this : I may be on dialysis but I still have the gift of sight, which I thank God daily for. I can still read, watch TV or cross-stitch, crochet or do other needlework. I still have 2 arms and 2 legs. I have 3 square meals a day and the occasional snack. There are people in this world who don't even have one meal a day.

Now, don't get me wrong : I'm not comparing myself the those less fortunate than me to make myself feel better. I'm just trying to put things into its' proper perspective. In any situation you're in, you can choose to be miserable, or you can choose to be happy. I choose to be happy and full of joy despite everything! What about you?

Monday, April 26, 2010

What do you think of being a Christian?

Hi again!

I was wondering why Christians make such a fuss about regular pop music. Sure, the lyrics aren't exactly what you would call holy but I find that if you close one ear it's not too bad. I certainly don't believe that all Christians should shut their ears totally to secular music and just listen to praise & worship or hymns alone. To me, that would be boring and I, for one refuse to do that.

Of course, I don't listen to the really profane like heavy metal or (I don't know what they call it) music that has lyrics relating to satanic worship or the like.

I just think that we Christians should be set apart for Christ but don't forget, we're still living in this world for now. So, should we go through life with blinkers on our eyes or earmuffs on our ears? I don't know about you but I don't think so! While we're here on Earth, we might as well enjoy what it has to offer but of course, make sure that it doesn't lead to sin, remember, I'm Christian too, despite being a little liberal when it comes to pop!

Till the next blog! Stay healthy & happy!

Saturday, April 24, 2010

My life so far.......


I'm a woman in her mid-30s who was diagnosed with SLE in 1997. In 2004, I started HD. I've now been a HD patient for more than 5 years! Whew! how time flies!

Now, how was it discovered I had SLE? Allow me to explain. I had just graduated at that time, I applied for a job in a big company and there was a compulsory health screening. During the urine test, it was discovered that my urine had traces of kidney failure. Because the clinic would not proceed without payment, I shifted my investigation to a government hospital. And I was fortunate that I was diagnosed early without the usual running around departments in the hospital that some SLE patients face because SLE is known as the disease with many faces that is, its' symptoms are similar to many other conditions, so it's very difficult to pinpoint accurately.

Then came my next challenge : delaying dialysis for as long as possible. I was immediately advised to adopt the renal diet, which isn't as fun as the normal person's balanced diet. Which meant I had to watch my sodium, potassium & phosphate levels. I had to eat less salt, certain vegetables and fruits (potassium) and also less beans, nuts, soy products, dairy products and even mushrooms (phosphate). I was also advised to drink less fluids. I struggled with the diet for 7 years but, even though I tried my best to be obedient to the renal diet, eventually my kidneys failed and I had to start HD (hemodialysis).

It has now been slightly more than 5 years, and the dialysis center I go to has become like a second home, all the nurses and staff there have become my close friends.

Before I started HD, people used to tell me that HD was 4 hours of suffering, but it isn't! There's the initial pain of the prick of 2 needles but after that, you don't feel a thing. Then there's also the initial stage of successfully creating a fistula or graft for the HD access. It involves waiting and certain complications but once that hurdle is over, HD can become a part of your weekly routine.

What I'm trying to say is, being a dialysis patient is not so bad once you've stopped complaining and accepted it. I thank God that he has opened my eyes and heart to realize how fortunate and blessed I am despite all this.

So, if you have been diagnosed with a major chronic illness, don't fret, it's just another doorway to another life, which may not be so bad after all. We are all sojourners in this world, our REAL life begins after we die. Yes, I am a Christian, and I believe our real home is in Heaven.......

Thank you for reading my blog. I will write more from time to time, watch this blog.....