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The Start

I started this blog because someone told me people need to hear what happened.

Actually, I am not very good at writing, so here goes. I was diagnosed with type 2 diabetes when I was 16, during a routine blood test to enter Temasek Polytechnic. Type 2 diabetes is the type where the body gets so resistant to insulin that the blood sugar starts to rise. Type 1 diabetes is the one which is caused by the dysfunction of the cells that produces insulin.

Well, being a naive 16 years old, I only thought, “YESSSSSSSSSSSSSSSSS, I CAN DONT WORK HARD FOR NATIONAL SERVICE!”

For those who don’t know, National Service is this thing in Singapore that requires all male citizens to serve the nation by being a soldier for at least 2 years.

With the news that I am diabetic, I was happy, for I will not be combat fit and will be assigned clerical duties…

Afraid to die alone

Time runs out.
Photo by Aron Visuals on Unsplash

A friend shared with me that her cousin passed away, leaving 2 kids and a wife behind. He was around my age, mid 30s.

This triggered a memory in me.

There was a period of time, around 1 and a half months before going into the hospital for emergency dialysis, where I was afraid to be alone. I would always look my mum and want her near me. I would get her to sleep in the same room as me at night, almost as though I won’t see her anymore in the morning.

In the day when there were people around me, I would be fine. At work, at the MRT station, bus stop, everything is alright. I did not feel the need to be near a particular person. It only happens when I am alone, when I would start looking around for a person so that I would not be alone.

This lasted until i was admitted into the hospital.

I guess the body knows when things are bad and sub-consciously, I don’t want to die alone and not be discovered. Or is it a survival mechanism, in case I lost consciousness, I will be discovered and rushed to the hospital.

In any case, what I experienced as my last moments drew near was the need to not be alone.

My life during dialysis

Throughout my year on dialysis, I had always say that I do not want to go through the kidney transplant surgery. There were many things in my mind that stopped me from wanting it. Things like the risks for both me and my mother, the hospitalization stay, recovery period etc. There came a point in time when I accepted that, maybe dialysis for the rest of my life wouldn’t be so bad.

Looking back, I think those were a front, like a coping mechanism for the mind to accept the reality that the transplant is never going to come.

My transplant coordinator said that I looked so disappointed and was always complaining about not being able to get the transplant early. Before she told me that, it had never occurred to me that I was complaining throughout. I thought I had accept it. Deep down somewhere, I had not and it showed up all the time without me being aware of it.

It has become a routine, the schedule for dialysis. I went for my 4 hour sessions every Monday, Wednesday and Friday so that I can have the weekend free. During the weekends, I would bring my birds for a spin on my electric scooter. I could not have rode a normal bicycle. My hemoglobin was still low and I get breathless easily from exertion.

Image may contain: one or more people and outdoor

This fella accompanied me to many places on my escooter. Riding around was free. I felt a lot of freedom just riding aimlessly from 1 point to another, not thinking about anything. Wonder how this fella is doing now…

During my year on dialysis, I remember this lady. She was extremely chatty and jovial. An ex teacher. She always joke about random things and interact with all of us patients. She is from the afternoon slot so sometimes, I will see her when i arrive for my shift at the machine.

1 day, I heard from another patient that she was urgently ward for fluid in her lungs. It just happened without warning, at a shopping mall, while she was waiting for her husband outside the toilet.

She passed away on the same day.

One can never predict what will happen next.

The cost of dialysis

Photo by Josh Appel on Unsplash

I was out of the hospital with the shiny new catheter installed on my chest. Dialysis in the hospital has been smooth with no hiccups. I felt okay. It was not a process as bad as I had imagined it to be. Of course, there is always a reminder at the back of my head, “I am doing dialysis without having 2 thick needles poked into my arm.”

During the dialysis counselling session, I asked if I am eligible for any subsidies from the National Kidney Foundation. The reply was that I had to go through a means assessment and the approval will take a few months. During these few months, I would have to be on dialysis at a private dialysis center.

The price from the normal blood hemo-dialysis? $1800 per month, and this amount exclude doctor’s appointments and medication from the hospital. For this amount, 50% is covered by Medisave, the rest…. Out of your wallet, in cash. I am lucky I got my company’s insurance to cover this amount so I never had to get any subsidies from NKF.

Dialysis at the private center was different from at the hospital. For the 1st few session, I had experienced chills and fever throughout. It was not a pleasant experience.

See, the machine takes out not just the toxins and water in the body, it takes out nutrients too. Sodium, sugar, potassium etc, all gets disposed through the dialysis process. Sudden cramps and hunger pangs are common during the dialysis session.

We are always advised to take less than 500ml of fluids per day. 500ml includes soup, fruits etc and not limited to use water. If we get too much water in our system, our blood gets diluted and excess water will also end up in our lungs which will drown us. As the amount of water being drained increases, so does the risks of complications such as cramps, high blood pressure and infection.

The dialysis process is a way to extend life, not a way to live. As a patient go through dialysis, the patient gets weaker and weaker as nutrients get removed and bodily functions depletes.

I remember going through 1 bowl of fried rice along with egg and a piece of fish, after 12 buns or a loaf with white bread with kaya and butter spread on them every 3 hour dialysis session. All these carbohydrates rich food without my blood sugar spiking.

The longer a patient is on dialysis, the lesser the chance of being fit enough to receive a kidney transplant from a cadaver.

“Cost” is not just money. Money is small. “Cost” also includes time, yours and your loved ones. Includes the opportunities lost, and a myriad of things that you might not be even aware of.

We always take the ability to work, to walk, to breathe, to see for granted. Most of the time, we even complain that we need to work, to walk. It’s always when we lose the things we take for granted that we realize how reliant we are on them.

Central Venous Catheter

Diagram and photo of the tunneled catheter

There are 3 options for dialysis,

  1. Internal Arteriovenous Fistula
  2. Internal Arteriovenous Graft
  3. Central Venous Catheter

Both AV fistula and AV graft require a surgeon to cut the arm open to modify the veins and arteries in there to create an access for the dialysis needle. This process is irreversible and side effects include loss of strength on the hand. If these procedures are not done, the blood flow will be too slow for effective dialysis.

The AV graft and fistula can only be used 1 month after the surgery to create it. The central venous catheter is an interim measure before eventually moving to dialysis using either the graft or fistula. As the catheter is inserted directly into the heart, one of the risks of long term use of this is the infection of the heart cardiac arrest and heart attack. The catheter can cause a blood clot within the heart which then triggers a heart attack or the stress of having a foreign body in the heart can cause the heart rhythms to go out of whack and cause cardiac arrest.

I was wheeled into the procedure room to have this tap installed in my chest for my dialysis.

The doctor sedated me. I was wide awake throughout the procedure. I remember a lot of pulling and a scanning device to ensure that the tubes are in the right places before stitching me up. A LOT of pulling. I deduced that the doctor is trying to separate my skin from my flesh so that the catheter can slide into the gap underneath.

The doctor and me were having a nice mundane conversation throughout the procedure. He did a nice job keeping me distracted.

I was then wheeled back into the ward and rested.

Went for my 1st dialysis session using the catheter and it worked perfectly. I was then scheduled for the thigh catheter removal the next morning.

The removal procedure was conducted in the ward. The doctors removed the stitches holding the catheter in place and pulled the thing out. He then applied a lot of pressure to ensure that there was no bleeding at the side and applied pressure bandage.

Strong pressure bandage + groin area = NOT A GOOD COMBINATION

But the only thing I was focused on is… the sole of my feet can finally touch the floor after 7 days…. I CAN GO TO THE TOILET ON MY OWN NOW.

And so this is how I began my 1 year dialysis process.

The gift that came 10 years early

Anatomy of the kidney

One of the many conversations we had in the hospital, one of them is the possibility of a kidney transplant.

There are 2 types of kidneys available for transplants, kidneys from living donors and kidneys from donor who just passed away.

The chances of a cadaver kidney transplant in Singapore is like striking lottery. Other than a 10 year wait list, you have to be chosen from the hundreds of eligible potential recipients from the list.

Not everyone is eligible for a kidney transplant. In fact, the kidney transplant surgery is such a major surgery, the donor must be fit to give and the recipient must be fit to receive.

My mum did not have to think when the kidney transplant conversation popped up. She immediately volunteered, I did not even have the reaction time.

Everything changed when she volunteered. My doctors did the blood tests on me and found that I was unfit for transplant in my condition. I had extremely low hemoglobin count, less than 7g/dL. Normal for men being 13.1g/dL to 16.6g/dL. The minimum required for the surgery to happen was 10g/dL. Why 10mg/dL? This is to ensure that I have enough oxygen throughout the surgery so that I don’r die of asphyxiation when there is blood loss.

I had to be given regular blood transfusions to being the hemoglobin count up.

I was a vampire.

The kidney produces a hormone call erythropoetin which activates the bone marrow for red blood cells production. With kidney failure, they stop producing this for me so red blood cell production was impeded.I was having sudden nose bleeds that can last for hours. Think my colleagues back then would have seen the blood soaked tissue paper I had in the bins beside me in the office.

My doctors also confirmed that my mum is completely healthy and fit to donate. They had to get me to be fit to receive in the shortest amount of time. This was the sole deciding factor of not doing the surgery to have the veins and arteries rerouted to form an access large enough for the dialysis to happen.

And so, this marks the beginning of my year long dialysis journey.

The thigh catheter for dialysis

Well having a tube up my groin was not a pleasant experience.

I had to keep my thigh straight to avoid bending the tube that connects my artery to the catheter. I was told to lie down and not get out of bed at all.

The nurses afforded me the best care they could. I can never forget how far they went to make me comfortable. They had to put up with my nonsense, basically my temper, my frustration etc while still maintaining the level of care for me.

From the patient’s view, there was no dignity in having to do all your businesses on the bed but to the nurses, they are the ones having to clean me up after.

My ex transplant coordinator said that I complained and bitched a lot. The nurses definitely bore the brunt of it.

I went on dialysis 4 hours a day, still holding onto the hope that my kidneys will somehow come back to life and work again.

Dialysis at my stage is all about just connecting tubes and allowing my blood to flow into a machine to clean out the toxins.

The thigh catheter can only last 7 days as it is an emergency measure. The doctor told me that they will need to insert a catheter into my chest as a temporary access to my artery for dialysis.

At that point in time, there was nothing I can do. Totally helpless.

First Near Death Experience

painting of man

I woke up suddenly in the middle of the night, looking at a strange place.

First thing that came into existence in my mind is… “Why am I here in this shit hole again.” As though I was back from… somewhere.

Back then, somewhere in 2016, maybe August or September, I was dragging my heavily swollen legs everywhere I walked.

My shoes went up by 2 European sizes, from 40 to 42. I weighed 85kg, I was suppose to weigh 75kg. I had 10l of water in me.

A simple walk at an underpass, from the Northeast Line at Outram Park transiting to East West line, I had to stop in the middle to catch my breath. I was drowning in my own fluid.

That night when I slept, I heard 2 breaths with every breath I took. Looking at hindsight now, it must have been the water that flooded my lungs. I had difficulty sleeping as I went out of breath. I had to prop my head up using 4 pillows to ensure that I could sleep.

Maybe unconsciously, I know my time is going to be up. I had this unexplained fear in me during that period. I did not dare to sleep alone, as though I am afraid to die alone.

1 night, I suddenly awoke, with no memories at all.

I looked around my room asking myself, “why am I here in this shit hole again?”

I looked at the window, “I know its “night” out there, but is there a “day”?” “How do I know what is “day” ?”

Suddenly this panicky woman asked me, “Do you know who am I?”

I looked at her and asked… “Who are you?” “Oh yes, you are my mother.”

“What year is it?” she asked. “Is it 1986?”

This world I am in is so familiar but it made no sense to me. I stared at the door to my room and thought “ah… there’s a living room out there… wait, what is a “living room” ?”

I went outside my room and went to sit down in my sister’s room. My sister had a bunk bed with a staircase, so I just sat at the staircase. I was looking at a scene, my sister walks into the room, asked me a question then she came back in again, and asked the same question. Exact same scene, exactly the same sequence, exactly the same question. And my reply was always the same, word for word, action for action, exactly the same. I tried to consciously alter the answer I gave, I was helpless. I will always end up saying the exact same thing over and over again.

Until today, I still wonder what it looked like to be on the outside looking at me. I was trapped in my own twisted looping reality with no concept of time. In that reality I was in, time was looping, not linear.

It stopped looping when I finally stood up and walked out the door. My mum wanted to call the ambulance but I insisted on going through with supplements and a treatment plan offered by a wellness company which promised to reverse kidney failure.

Irrational.

My mum and sister finally managed to trick me into a taxi that took me to the hospital. In my mind, the only thing that kept on repeating were thick needles poking into my arms. Dialysis.

When I reached the hospital, I was immediately put on the bed and pushed into observation room. I insisted I can walk but no, the nurses put me onto a bed anyway. Guess I must have looked like I was a walking dead to be accorded such treatment.

I was having hiccups all the way. I thought nothing of it until a doctor came in and said that it is typical for kidney failure patients to have hiccups non stop.

I was put on emergency dialysis that night, a catheter right in my thigh into my femoral artery and vein. I still remembered clearly how it happened.

I asked the doctor if it was painful, he said there’s anesthesia and took the 1st incision. then I saw blood oozing out and i shouted “blood blood!”

He told me, “You have 5 litres of blood in you, you won’t die with a few drops!”

Then I laughed and he laughed too. I guess I was having a toxins high back then… Blood test results returned 1200 mmol/L of creatinine that night. Normal range is between 60-100 mmol/L.

The doctor came in the next day and told me that I had to spend the next 7 days in bed because of the catheter, no getting out of bed.

Sure, all the meals are served to be, breakfast in bed always sounds nice. But what does in must come out… right?

He also told me that I would have only survived another 2 weeks if I have not come in the night before. 2 weeks? I already felt that I came back from the dead.

Proud to smoke since 12…

My dusty 4 year old pack of cigarettes

You know, people always say that you are who you mix with.

I have been a rebel since I was 12. Whatever you tell me not to do, I will.

I smoked since I was 12, and today, I proudly announce that to everyone.

Smoking for me back then was to belong in the in crowd. The crowd of bad boys doing the bad things because bad things are cool and bad guys get the girls yea?

Smoking had always been a part of my adolescence, teenage and young adulthood. I still remember that I bought cigarettes stick by stick from the mama shop downstairs, lying about getting it for someone else because I was underage.

I hid the fact that I smoke from many people who wanted me to quit. I became such a good chameleon that I can, at will, control whether or not I craved for the stick.

It was 4 years ago when I started exercising in the gym when the cigarettes started tasting bad.

I had tried nicotine gum, sweets and other ways to stop but to no avail. Strenuous exercise however, stopped the cravings.

It was there and then, I chose to stop smoking and I stuck to it. Gym until every stick tasted bad. Until I stopped completely at this pack. There are currently still 10 sticks in this packet and I intend to keep it this way until I die.

I am proud to say I smoked since 12… and quit.

The troubles do not seem to end

The thing about problems, they do not seem to stop once they come.

I had cataracts on both eyes because of diabetes and the retina detachment. Yes, cataracts at 30. Imagine going to the waiting room to be surrounded by 50 year olds or older. I stuck out like a sore thumb.

I had a total of 3 surgeries done to my eyes to ensure my vision, or what’s left of it.

With these surgeries come blood tests, showing that my kidneys are not holding up. Every blood test yielded worsening kidney functions.

The diagnosis of the kidneys at that point in time? Stage 3 chronic kidney disease.

Having a direct and blunt, or so I have perceived with my impaired cognitive functions and emotional stability, did not help me building rapport and trust with me doctor. I did not trust my doctor simply because the medicine give was not producing results.

From diuretics to steroids, nothing worked. I had metformin to control my blood sugars back then. They thought it was appropriate.

The dieticians thought that a high carbohydrate diet low fat low sodium diet is appropriate. Now I know, they are not appropriate.

Photography – A hobby lost

Photography was one of my favorite hobbies. I do not do any post production, no alterations to the visuals of the photos, no filters.

Armed with my Nikon D90, I would shoot anything from sunset to animals. I don’t really enjoy shooting posed shots. Cannot seem to capture the moment for the person.

To me, photography was a way to capture that moment in time. A moment which I want to preserve. Sunrise and sunset were my favorite subjects when it came to shooting. Imagine waking up before the sun’s up to capture that golden hue.

I love warm colors. The yellow, the orange. There is always a clear definition of how a perfect sunset must look like. It was as though every photo has its own composition even before the shot was taken.

I loved the visits to the zoo and birdparks. Animals are such nice subjects. There is no pretense. They do not need to look good. They just do.

After by surgery, photography will never be the same again. I cannot look through the viewfinder with crystal clear eyes anymore. Everything is blur and tainted with black spots and veils.

It might be something I can never get back. Photography lost.

My D90 is still with me. Albeit old, its still working, and I doubt I will sell it. After all, it is my one and only DSLR.

I miss going out to capture shots like these…

Photography is just one of the many things I will lose in this journey.