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Life with NIPHS, Sungai Besi (2026)

Also, to shed some lights to the medical field on such rare disorder. Also, to shed some lights to the medical field on such rare disorder from the patient's personal experiences.

24/07/2022

AFTER THE STORM
~ 26 September 2021 ~

Just learned that I had to stay in the hospital for a few weeks. They needed to do quite a bit to treat my post-op complications.

My jaundice had worsened. But thank God, the bloating sensation subsided.

It did not happen suddenly. I had been feeling intense pain and my abdomen had been bloated since the distal pancreatectomy on 1 September.

Just that, it got worse and worse until my abdomen became frighteningly BIG, and the pain could not be relieved by the prescribed strong painkillers…all these were part of my so-called post-surgery complications.

Anyway, I still could not quite talk now. My mouth was extremely dry because of the nasal tube for draining the fluid in my stomach. I was all tubed up....TPN (liquid nutrition), drips, IV lines for painkillers, medications, antibiotics and whatnot. For the first time in my life, I was bedbound, with diaper >.<

My Prof surgeon said my jaundice was not getting any better. He would order a procedure tomorrow to drain the fluid out from the side of my abdomen, again.

Oh yes, the BLOOD TRANSFUSION. It was a never-before experience for me…exhausting. As they had to stop the TNP when they did so, causing my blood sugar to plunge way low and thus, became hypoglycemic. Consequently, they had to inject sugar back into me again...and it went on and on and on. An episode of torturous, prolonged on-and-off hypoglycemia.

Now, my personal feelings/thoughts about the 8-pint blood transfusion. Initially, I was truly and deeply grateful to these 8 persons, whoever they were, for saving my life with their blood. However, after some time during the long process of transfusing, ridiculous it might sound……I felt like I was a vampire, “feeding on” human blood and clinging on to it for my own dear life. It was…repugnant, to say the least. But then again, please do not misunderstand - all in all, I could never be grateful enough for all the blood donors out there. They did not know they were doing a selfless deed to others at large; true heroes they were.

After the blood transfusion, my systolic blood pressure shot up to 145-155; my whole being was constantly feeling hot and indescribably uncomfortable. It was like 8 different persons had taken over my body...the compassionate nurses could testify to it. And it took two weeks for all these to be back to normal. A very strange experience, if I must say.

On the bright side, my haemorrhage in the liver had improved. Haemoglobin level had also gone back up, albeit the pancreas and bile duct still being swollen and needing close monitoring.

Prof said, I would not have had made it if I were rushed back to the hospital a tad bit later.

I was, literally, at the edge of death. Surreal.

06/12/2021

THE SURGERY
~ 25 September 2021 ~

I last wrote on 13 July, “...this surgery might not be a success. But I am more than willing to take the chances. With the risks involved in the impending surgery(ies), this could be my last posting…”

Well, that was not my last posting. I survived. I survived the surgery (to remove more of my pancreas), with horrendous post-op complications that almost took my life.

The distal pancreatectomy on 1 September went smooth and well. I was discharged 2 weeks later, without knowing the nightmares had yet to begin.

22 September - the fateful day. I was rushed back to the hospital through A&E because my mischievous remaining pancreas suddenly decided to act out and leak, causing intense pain and other complications including the rupture of the bile duct, and bleeding in the liver due to the pressure built up in the abdomen. This fateful day, all hell broke loose.

Oh, I became yellow too.

Upon reaching the hospital’s Emergency Room, I received immediate treatments…..and then everything went blur……

As I woke, I was already in the ward. I could not talk. My mouth was extremely dry because of the nasal tube. I was on Total Parenteral Nutrition (TPN), drips, IV lines and whatnot. I could not move. A procedure to drain the fluid out from the side of my abdomen was carried out the next day.

This morning, I went through all sorts of torturing scans...amongst which, Contrast CT Scan, another scan to check on the fluid collection in the abdomen using dye through the “draining hole” at the side of my abdomen. And, surprise…..some blood clots were detected inside. Prof said they would monitor and wait for the clots to settle in.

Notes to self : Contrast CT Scan is very common for capturing clearer pictures. I have done it countless times. But not the one from the side of abdomen where a big monitor shows the innards in real time – this is something new to me.

Oh yes, I needed 8 pints of blood because of internal haemorrhage.

This, was my first brush with death.

17/07/2021

THIS TOO SHALL PASS
~ 13 July 2021 ~

My dearest all,

Can you remember… when was the last time we sipped coffee together? When were our last small chats? Last giggling together? Our last heartfelt smiles? Last warm embrace?

I was hit with a severe hypo attack during my meal last night. Yes, you are right, during meal - it was a joke. Nobody would believe me.

In fact, this was not my first. The first experience was mild, therefore I did not take it seriously. But it hit me real hard last night. I ended up being escorted to bed right after. I wish I were joking.

And on 22nd June, I collapsed unconscious. Again, the second time. Hubby found me on the laundry floor. I was out for at least 15 minutes.

Although I have made peace with NIPHS and decided to co-exist with it, the second unconscious collapse and the highly unusual hypo attacks during meal had forced me to pause, and re-think if I should continue to subject myself to such life-threatening risks anytime, anywhere, anymore… I mean, something MUST be wrong inside. I cannot be living my life this way. It is insane. My life quality is so severely limited. I dare not even do what I used to enjoy doing anymore i.e. driving. As far as I am concerned, the word “independence” has long been struck off from my dictionary.

It has now become more and more apparent that, the chances of my family finding me dead when left alone, are getting higher. Yes, I have accepted NIPHS as part of my life; but this is all too ridiculous. There must be another way to live with my condition. There has to be a way to stabilise the erratic conditions and to provide some form of safety assurance in my daily life.

After chancing upon an FB Group named “Hypoglycemia Complex Cases”, I finally feel I am not alone. I have finally found a group of “special” people from different parts of the world living with complex hypo cases, sharing if not the same exactly, at least similar experiences as mine. They all have to put up with the same ridicules and frustrations coming from their respective medical specialists/healthcare providers. Our rare conditions are hardly even acknowledged, simply because they are beyond the comprehension of the medical specialists/healthcare providers... and I thought this only happened in my country.

Well, after the second collapse (with in between, countless of hypo attacks, be they mild or serious), my Prof Surgeon and Endocrinologist had re-weighed the post-surgery risks and the potential benefits to be derived from; and decided to remove more of my remaining mischievous pancreas, with the hope that the surgery would somehow improve my condition. Of course, this surgery might not be a success. But I am more than willing to take the chances.

With the risks involved in the impending surgery(ies), this could be my last posting.

All I know is - this, too, shall pass.

When was the last time we created memories together? When did we last do the little simple things in life? Our last foolish babbles? Our last hugs? When did I last told “I love you”?

Remember these moments. That is all I ask of you.

07/04/2021

AT THE BORDER

~ 6 April 2021 ~

I was at the border, again.

It’s nothing new to me anymore, except the pattern each time it strikes in.

I take it that God somehow gave me a nudge and woke me from yet another sharp dip (hypo attack) during my sleep. This time around, I opened my eyes just to find myself in a daze with hollow hearing, and paralysis. I was all by myself. I must do something, for survival, at least.

It is interesting to know that the smallest body movement needs energy. We always take it for granted; only realising it when our bodies are in dire need. It was hell of a daunting task for me to reach out for my handphone by my bed, and then merely press a key to send out SOS messages. The next thing that followed, was my sister from another district, calling my hubby who was in our living area (obviously, missed my SOS message), to inform that I needed help. Tell me about technology.

After hubby and son rushed to feed me with sweet drinks, I fell back to the familiar deep, dark space.

My body has been communicating with me in its own unique way. Three weeks ago, when I took the chances and dashed to a shopping mall to buy some essentials, it protested, fiercely. Toward the end of the short dare, I was reduced to a squatting position in a shop. I was left with no strength to remain standing. Thanks to the kind shop assistant who helped bring a shopping trolley from the other end of the mall and loaded my stuff into it. Half leaning on the trolley for support, I quickly went to the car. This reminded me of the time before my distal pancreatectomy (partial removal of pancreas) 8 years ago. I was that weak back then. Well, another deteriorating sign? Fight on.

I have been at the border, again, and again, and again. The feeling is weird. Those moments, I felt the lights in me getting dimmer and dimmer. And when I was at the other side, it was complete darkness…no more lights, sounds, feelings, time, orientation…just a void filled with nothingness.

But God pulls me back each time. Perhaps He wants me to replay enough times in my head, the wonderful moments we had together; the crazy laughters we burst out loud; the foolish jokes we made every now and then; the childish and untamed ideas we toyed with; the beautiful horizon where clouds and waves meet…until then, He won't let go.

“…I get along without you very well
Of course I do
Except perhaps in spring
But I should never think of spring
For that would surely break my heart in two…”

23/01/2021

EMBRACE

~ 23 January 2021 ~

Last night, it crept up to me again, very silently.

Just when people close to me have been telling that I look better lately, it strikes again. This time, real hard.

The attack came past midnight... when I was half asleep. Thank God my body was aware this time around, and sent signals to my brain. My sugar plunged so fast that I was paralysed within seconds, leaving me with just enough energy to call out for hubby from his dreamland.

I could not even move or sit up to drink the soya bean milk rushed to me. The only thing hubby could do was to let me take the soya bean milk from a straw, in bed. Difficult to swallow lying flat, though, but it served the purpose. As the overwhelming weakness filled my entire being, I could not even figure out if my body and mind shut down, or I fell asleep right after.

The next thing I knew, I opened my eyes late this morning and, I was still breathing. But my body was so weak that I could not even walk. Ended up having a simple breakfast by the bed, with hubby’s help. It took me more than half a day to regain a decent amount of energy.

Now, that was indeed another level of intensity. A fresh, new experience… as if my body was trying to communicate with me. Made me wonder if it was a sign of something bigger yet to come. But all in all, I still thank God. It could have been worse. It could have been my last night in this beautiful world… even though it really does not matter to me anymore, frankly.

Not that I have not been having any hypoglycemia episodes lately. At least I have been able to handle the episodes well whenever my pancreas decided to “poke” me and have fun with me. As told before, practising yoga has calmed my mind so much that I have accepted my life with NIPHS. I manage to deal well in times when my sugar dips, and accept the come-what-may's. But then again, as a mere mortal, it is still scary when I find that my body no longer acts at my will. I do not know my own body anymore.

Well, no matter what, I will bounce back, again and again and again. And as far as I could, I will still write to record my experiences with NIPHS. I hope my posts could help the rare NIPHS patients out there have a glimpse at the various types of interesting hypo attacks, and deal well with them. One very important lesson NIPHS has taught me, is to accept incurable chronic disease with grace.

Embrace it, and we shall find peace.

To all who have crossed paths with me in this lifetime, now destiny seems to have whispered the obvious. When I finally stop bouncing back, and we lose each other somewhere along the way, remember to embrace our times together.

Embrace, and we shall find peace.

02/12/2020

I AM ONLY HUMAN

~ 1 December 2020 ~

Since I started a one-to-one yoga session in end August, with the initial hope of regulating my blood sugar, I have learned something else instead. Something deeper than mere yoga poses....it is peace in my soul. I have learned to accept my rare and erratic medical condition. I have learned to embrace NIPHS. I have learned to appreciate life. And I have learned to make peace with my destiny.

I salute and respect how my late father endured the pain of his liver cancer. It is believed that pains caused by any type of cancers are of the highest degree. Yet, he never even uttered the word "pain", nor did he even led out the faintest sigh of agony. Never.

Praise the Lord, I am not suffering from cancer, yet. However, this chronic, erratic, unpredictable hypoglycemic torture is by no means even near easy to deal with neither. But I am surviving...one awful episode at a time.

Three weeks ago, simply a short moment of dizziness brought me a nasty fall in the washroom. My head hit the bath tub, then on to the solid floor. I was so weak I could not even get up until hubby came in about 30 minutes later. Motionless, I lied on the floor and kept telling myself to stay awake in between blank moments, so as to prevent myself from "drifting away" in such manner.

The few days after, a minor concussion ensued. I felt very weak, tired and in a daze, all days through. It took me a week to recover. Well, all in all, I am still thankful, as it really could have been worse.

Not whining. Today, I had one of the very bad migraines, followed by yet another hypo. And yes, tonight, I feel emotionally drained.

I am no saint. No doubt I have learned from my Yoga Master to be mentally calm and accept come-what-may. But tonight, I feel like crying. I feel like being set free. I am just a human made of flesh and blood. I have feelings.

Falling, has now become part of my life. I have fallen at least three times in the past two months, due to split second of dizziness and hence, loss of balance. Each fall more serious than the previous. I could have been gone by now. Perhaps my time is not up yet.

I am writing in blood on my walls now, because the ink in my pen has run dry. One day, when I am finally gone, move on. But remember me, and my abundant love. Remember us, will you?

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