Tuesday, March 17, 2009

Why I don’t drink

ps : it's a super long post

pss : I actually wrote this last week before I realised what day it was the next day.

I don’t drink. While I’ve tried quite a number of concoctions, I’ve never liked the taste. Thankfully I ain’t one of those up-nose people who condone others who do. It’s a personal taste – live with it!

The thing is while I’ve always maintained that it has to do with the super bitter taste (how the hell do you ppl drink that stuff), I think unconsciously I’m freaked out about the consequences.

Excessive drinking usually leads to one of 2 things kidney failure and liver failure. It may not immediately kill you, but the dying process is unbelievably painful.

“Hey but it’s not the number one killer!”

Let me tell you something, you have no idea what the patient and their families go through.

I was 13 and just out of my tuition class I was waiting for my dad to come pick me up. I still remember that night vividly. My dad’s car stops and as I was about to get in when he tells me go find someone to drive the car. He looked like he was in intense pain.

I got out and looked around and found a family friend of ours about to drive away in his car. I managed to stop him and told him what was going on. He rushed out and headed straight to dad and assuming he was having a heart attack we headed to the temple to pick up mom and rushed dad to the hospital.

That was our first brush with emergency rooms, first of many such visits.
It took the drs a while to figure out he wasn’t having a heart attack. My dad’s kidney’s had both failed. Finally the renal specialist sat us down and gave us the grime news.

Both my dad’s kidneys were no longer functioning. The dr had warned my dad about the situation months before (which he didn’t tell us). The cause was identified as a young age wound to the hip which was not treated properly and intensified by my father’s history of high blood pressure. Apparently he had been living most of his life on one kidney thanks to that accident. The injured kidney had long shrunk to the size of a penny.

The funny thing is while my dad was a light drinker, he was the one who followed the strictest food regime at home – low salt, low sugar ext.

We had 2 options to immediately begin dialysis treatment or arrange for a kidney transplant. Most kidney failures are caused by excessive drinking but the cases like my dad though not common, are usually high risk cases where transplant is usually not recommended.

You only need one kidney to live but on the condition you control your diet. Kidney transplants don’t come cheap and then there’s the nearly impossible task to find a matching donor. Malaysian rules then, denote that the wife and her relatives cannot donate their kidney. Only a relation from your side of the family or children can donate a kidney. We also cannot receive a non blood related donors kidney unless they are pronounced dead and are registered organ donors. The waiting list for that is pretty long.

So the only option we had at that moment was to undergo dialysis. Dialysis does the exact work your kidney would do outside your body. Blood is streamed out into a dialysis machine and cleaned out of the unabsorbed minerals and residue from food and drinks. The process takes about 2 hours and must be done at least 3 times a week.

People undergoing the treatment are usually advised to go vegetarian, REMOVE salt from their food and avoid a list of high mineral foods especially those that contain potassium such as Durian.

My dad used to be crazy about durian while both me and my brother rarely eat mutton he loved it. So the whole family went through drastic change in our diets. About a few months back I had decided to become a full time vegetarian which my mom decided to follow. Dad hadn’t been happy about it but now he had to become one as well. Salt was totally removed from food cooked at home. We practically ate saltless food or with the bare minimum necessity for 4 years.

My dad was the sole breadwinner at home, mom was a housewife, I was 13 my younger brother was 11. So he would wake up at 5 am in the morning and head out to his dialysis centre in PJ with mom. Come home at about 8 rest for a while and then head out to work. In 1992 this was still considered an uncommon ailment. While his office was understanding about his situation, he still needed to work.

Dialysis may seem like a god sent cure but it is a painful process that slowly drains your body of the mineral it needs and causes side effects like brittle bones and teeth and more. It’s what you would call a slow killing machine. In 1992 there were no free dialysis centres or subsidized centres. It was an expensive process that was a necessity to them.

Most people couldn’t even opt to have a transplant as their bodies were too weak for the procedure.

You would think people would have been there for you in your time of need. Let’s just say people took advantage of our situation, used us, my mom’s mother who my parents had been looking after post her operation, abandoned us saying she wasn’t gonna live in a sick man’s house, my dad’s sister who offered her kidney and retracted it after getting what she wanted from dad and the works. You wonder why I hate most of my relatives ;p

There is a silver lining to the story. All this and my dads deterioting health pushed us to head to India to get the transplant done. India thrived on medical tourism then which was an unheard term. In India you could legally purchase kidneys for donors that were screened by the hospitals. The cost is huge but comparing it to my dad’s life it wasn’t a big deal for us. The sad thing is the donor actually gets very little money.

There was this one night none of us could forget. Dad was on his way to India to discuss some business opportunity. It was during a navarathri celebration and I was performing at this temple in Batu Caves. We reached home to receive the dreadful news that dad’s flight had to be redirected to Singapore on an emergency. Dad had suffered an attack during the flight take off. This was another side effect to the dialysis. We hadn’t realized that patients need to perform a dialysis on the day of departure to avoid attacks to their system.

The bill for that was a very interesting number. Someone in our family actually made a plane land ;p NOT funny.

That kind of sealed the deal for us. We decided to head to India to get dad’s kidney transplant done. We were warned against it as dad was given only a 10% percent success rate due to his high blood pressure condition. We didn’t really have much of a choice at any rate whichever way he could die. It was better to take the risk then see him suffer.

My dad insisted that we should follow him no matter what. If he was going to die he wanted his family near. Can you see the trend? Our family has practically lived in hospitals and faced death so much we’re kind of used to the word!

Anyway right after my PMR exam in1994 the whole family quietly packed up and headed to India. I’ll leave out the details about our trip, I think I’ve written about it or maybe another time.

First we had to find a donor and mom insisted on a young man. Getting someone to match itself was a problem, getting a younger man took us 2 months. In that time we lived out of a hotel for a month as Chennai isn’t friendly to foreigners. It finally took a mention of my moms caste to get us a place a month later! In rome live like the romans!

I don’t know how many times god smiled on us. The whole trip was one miracle after the other. My dad’s operation was the second last legal kidney transplant in India. Right after that, the Indian government banned the purchase of organs from living donors. He freaked out his drs by waking up right after his 4 - 6 hour surgery and asking them was it a success, heard the answer and lost councuse again!

The nervous wreck family sitting outside were puzzled to see the dr come out smiling. All he told us was, in all my years I’ve never seen anyone wake up after all that medication!

My dad was placed in a single ward ICU. No one gets to go in besides the nurses and drs. My mom was allowed in only a week or two after. So we could only see each other from this little window and dad was in a lot of pain.

Even after weeks of precisely matching a donor organ, the body can easily reject the organ as it reacts to the organ as an intruder. So to reduce the rejection percentage, patients need to consume the cyclosporine tablet. The tablet cost about RM1000 – 2000 for half a month. A patient cannot live without these tablets.
This tablet helps reduce the patients white cell count so that the body is always weaker which makes them vulnerable to common diseases. So while the diet can be relaxed a bit, patients still need to ensure they don’t even catch a cold. Not only does it take longer to heal but could risk your health and the vigor of the donated organ.

It didn’t end there for us a week before we were planning to leave for home, that caught an infection and was put into intensive care again and the drs refused to let us go. By the time we got back we had been in India for 4 months and missed 3 months of school.

My dad still had to wear a mask to reduce infection rates for about a year, of course being him, he took it off in less than 6 months. Dad lived about 10 years after his transplant. He was one of the few transplant patients who successfully beat the odds. That of course was attributed to the fact that he remained a vegetarian for the rest of his life, ate a balanced diet with reduced intake of salt and sugar and stayed away from potassium.

Despite all that, he still had to deal with 3 heart attacks caused by blot clots formed due to the consuming of the cyclosporine tablets. One of the few side effects to taking the pill. The last attack took his life. We believe if he had lived then, his kidney may have failed him.

It took my dad 10 years to pay up the bills he accumulated from purchasing the medicine and undergoing the transplant which he paid using credit cards. Middle class people are neither rich enough to help themselves nor poor enough to receive help. We did get some donations from the company and colleagues he was working with. Dad used to joke that if his kidneys hadn’t failed we’d have been millionaires. ;p

The government only began subsidizing the cost of the medication and dialysis of renal transplant and failure patients in 2001. A much welcome relief for many patients.

I wouldn’t wish this even for an enemy. The family and patient have to go through just about hell for survival.

I don’t think I would even have the courage to go through this and neither would I be able to afford any of it.

Though my dads condition wasn’t hereditary, I freak out everytime I have even a slightest renal related symptom and proceed to bug my dr to conduct tests for me. I once did 2 urine tests 2 weeks in a row much to my drs protest to make sure I was ok. We came to the conclusion I was plump but everything else was healthy give or take the occasional flu. Paranoia can be good! ;p

Oh there’s something called insurance right? Well don’t even get me started on that bunch of liars. My dad had a great eastern insurance package from years ago and when he got back, he was promptly told we do not cover any operations outside of Malaysia, Singapore and Brunei! I wonder if we died there would they tell us I’m sorry but we don’t recognize death in any other countries. You are still alive to us, please ensure you pay up your monthly bill or it will lapse!

Did you know about the women disease clauses? The new disease clauses? The virus infections like SARS? SORRY people they don’t cover you ;p

Let’s just say insurance agents don’t like me!

The morale of the story is drink within your limits, eat healthily, eat more veges. If you get injured, for god sakes go check it up. Don’t overdo anything including the healthy stuff. Too much or too less of anything is bad – the key word is balance. And do regular checkups.

If you can and if you want to, become an organ donor. It’s a super easy process. Here’s how I became one.

So think the next time you decide to binge on alcohol or red meat. Think about those huge needles that they will poke into you to cleanse your blood!

2 comments:

Anonymous said...

Your dad seems like someone who fought against odds. It does take tremendous courage to fight such pain.

A real good post.

-kajan

Anonymous said...

Touching recount of a very difficult time in your life. Makes me wish so much to want to meet you.