Whoa--oh, here we go!

"Excuse me, aren't you from Klang? You had shorter hair back then"

Yessirreee!! He remembered me!

(^__^)

It sure pays off to show up and take part.

"Dirrty" shall be our song.

*sigh*

I did it!

After all the lamenting and sighing...

I've finally signed up!
I'm now a FF passport member....which also means now I pay tolls and parking fees just to go work out. Can't win 'em all, huh?

So Les Mills programs, here I go again!

Blood Updates (May-July '09)

After being the whole hospital episode, I thought I would be improving. And for a while, I was ok. There were follow ups with Dr Ng every other week.

8/5/09 results:
Haemoglobin, Hb = 11.8 g/dL (normal = 13-18) == improved
Red blood cells, RBC = 3.7 x 10^6uL (normal = 4.2-6.0) == improved
Reticulocytes = 11.0% (normal = 0.2-2.0%) == not good, higher than last test
LDH = 1937 U/L (normal = 100-190) == not good, higher than last test

Some good, some worse. All when the medication is high. Right about this time, I thought I was getting stable, and will improve onwards. Doc was pleased and scheduled me to follow up two months later.

At the end of May, our family was preparing to move to the new place. Right about this time, my body began to show signs of regression. It was similar to the time before I got hospitalised.

It is frustrating. I wasn't exerting or sick. The haemolysis occurred again, ie. dark blood discharge in pee. Subsequently, my complexion was pale and jaundiced again.

More than just frustrating, it was simply nightmarish. You can't imagine how horrible it is to keep it from my family, in case they get worried. I needed help but feared shocking them.

Mom and dad cared a lot and tried doing the best they earnestly can. Any suggestion was worth trying out. We just simply struggle to cope without any proper knowledge. How could we know what to do? No one could tell us if it was right or wrong until it was done.

As a result, I had too much tonic that made me "heaty". It strained my blood system and made things worse. I started being too sweaty but didn't know why. Initially I thought it was due to adjusting to the new house. Only later, we discovered we have been going overboard with the tonic. Ignorance...too much of a good thing became dangerous.

Once we consulted my herbalist, Ms Chong, we scaled back on the tonics. My system cooled and I improved tremedously. And I could begin to see the urine clearing after two weeks.

Two weeks of haemolytic crisis! It's just insane!!

Another blood test during this period with Dr Ng. This is around the time when I started to improve. Overall, the test on 22/6/09 was a regression. But I still believe God is good to me that I have not collapsed altogether. It is still a miracle I get out of bed each day.
Hb = 8.4 g/dL
RBC = 2.5 x 10^6/uL
Reticulocytes = 24.2%

I was still put on moderate amounts of prednisolone by Dr Ng. The next follow up is 1 month's time.

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When I started my new job in July, my boss warned that it'll be a busy month. It's true.

I ended up sleeping very little on many days. I just got consumed by the pace and passion of the medical industry. It's entirely my fault. *shy* Will watch myself on this.

I missed my appointment with Dr Ng on 20/7/09 due to work. Tomorrow is the replacement check-up.

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I appreciate all the genuine concern and prayers from my family and friends. Even my ex-colleague, GK and her hubby have made a bold step to pray for me in my hospital ward and stood with me declaring I'm completely healed.

My parents lovingly speak blessings over my health each day. Close dear friends kindly uphold me in prayer. I keep positive messages and words of healing surrounding me. Pastor Joel shared that in times we are seeking for a breakthrough, we have to be fully persuaded God is faithful to do the miracle. It's good to know facts, like how much I tried to read and understand about PNH. However, it's important to know that I cannot understand it all. I have to shut my mind off from reasoning. And let God's hand bring about the impossible for me.

When I last declared that my flow cytometry results showed no expression of PNH cells, my doc and the research professor from UMMC rationalised it out. They claimed I have to repeat the test with perfect conditions for sampling the blood, ie. not sick, not exerting or haemolysing. It made me shrink back and believed I cannot be healed because of the scientific fact.

When Jesus died on the cross, He took away all diseases...which especially means mine too! I'm a child of the Most High God. He is more than able to heal me completely.

So, right now, I don't want to understand why my results say I'm free of PNH. I am not in a hurry to repeat the test. I want to keep speaking the word into my health and let the breakthrough happen. This means, to me, a complete restoration of my Hb level and no more jaundice. I'm putting a demand on my faith. Why not, right?

Please understand I have not strayed from sane thinking and chant a holy-joe line. I am not going into my health situation being blind to facts. I do my research, have medical follow-ups, take my pills religiously, eat right, and will sleep more. My family has done what we can. And honestly, we can't do anymore. Only God can. Seriously.

The Interim

Well, looks like I made another disappearing act. ;)

Believe me, I've been preoccupied with many other things. Major significant things like...
1. Baby Alex, my nephew!
2. Moving house
3. Changing jobs
4. Back to teaching speech & drama classes

...all in less than 3 months!

So, you can imagine the wondrous, frenetic ride it's been. ;)

Do bear with me. I don't intend to leave you high and dry on my "bloody diaries" updates. There's some more stories to share. It might be slow...but I'm gonna try my best to get cracking.

Let me just share a couple of powerful worship songs from Lakewood that has touched me. The words bear such incredible impact...


"I am victorious"


"Moving forward / I have decided to follow Jesus / Free to Worship"

I have been virtually attending Lakewood as much as I can each week. I love the spirit-filled, grace-centred, hope-filled, messages that glorify Jesus from Pastor Joel and Victoria Osteen. The word has never failed to encourage and renew hope each time. The worship there absolutely awesome. I am extremely blessed by Lakewood. God is truly doing a mighty work in me through them.

Blood Updates (April '09)

From my last doctor's appointment till the first week of April, everything went on fine. I felt better than ever. I even began to do light workouts, like yoga and took on a bodypump class. I was awake and alert during the day.

Suddenly at the second week, it all changed.

7/4/09 : Dark blood appeared in my urine. It smelled ferrous. It shocked me because I was all fine. Last time, this doesn't happen unless I'm having high fever. Now, I've no fever whatsoever. Another instance is when I overexert in a cardiovascular workout. But I haven't done that lately.

It didn't clear after 3 days. And still, there's no fever.

10/4/09 : Still experiencing haemolysis. It made me worry that my Hb will plummet after the progress made. I went to Dr Ng for a check up.

Hb = 10.7g/dL. It's even higher than last month's 10.0g/dL! I suspected it was much higher prior to this test.
Red Blood Cells (RBC) = 3.7 x 10^6/uL (Normal = 4.2 - 6.0) It's consistent with my low Hb.
WBC = 4.5 x 10^3/uL. Within normal range of 4.0 - 11.0. Also suspected to be much higher before test.
Reticulocytes = 11.3% (Normal range = 0.2 - 2.0) This indicates the amount of immature blood cells in my system produced to compensate blood loss. Such accelerated production meant that I must've had substantial normal blood cell loss.
LDH = 2356U/L! So much rbc haemolysis.

Remember the flow cytometry test from last month? Turns out my red and white cells populations express the CD55 and CD59 gene! Whoa!! PNH does not express these components in my cells. On paper, I HAVE NO PNH.

Doc scratched his head. He called me a question mark case. He wasn't ready to let go of the PNH differential, and wants a retest. I was between feeling relieved, puzzled, and a little annoyed. After all these years, right?

Yet, back to the most pressing matter, I still have severe haemolysis shown in my urine. Dr Ng thinks it might be s urinary tract infection (UTI) and put me on some antibiotics and urinary alkalizers.

16/4/09 : After the 5-day antiobiotic course, nothing changed. The haemolysis in my urine persisted without abating. It's been ten days since the onset. This is the longest ever! And I wondered how much Hb I still have left.

It got so perplexing that my mom asked me to get admitted into the hospital for a few days till I'm completely well. (=___=") Hospital? Again...?! I'm at my wits' end.

In the morning, my blood test results were as follows:
Hb = 9.8g/dL. Rather surprising.
RBC = 3.0 x 10^6/uL. Already showing a downward trend, still consistent with Hb count.
Reticulocytes = 18.9%. It's very high.
WBC = 4.0 x 10^3/uL...which just barely makes it into the normal range.
LDH = 2592U/L. This means major blood breakdown.

Me? Still no fever.

Dr. Ng ran a few other blood tests for collagen profile, antibodies, and a direct Coombs. They were to rule out other differentials like lupus, auto-immune, or other forms of blood disorders. In the end, since my flow cytometry was positive, and I don't have lupus or other normal blood disorders, he came down to "Coombs negative Autoimmune Haemolytic Anaemia" (AIHA).

I thank God it's not something like lupus. That will be absolutely devastating. And I don't have thalassemia or myelodysplastic anaemia (a form of pre-leukemia).

I had an abdomen and pelvis ultrasound to make sure my organs were not damaged from all the high protein exposure. The scans came out all clear, save for some small gallstones. Easily manageable. Praise the Lord!

To Dr. Ng, I still remain a question mark diagnosis. On the upside, if I do indeed have AIHA, then I can start to source other forms of medication instead of prednisolone.

While admitted into the hospital for treatment and observation, I was given intravenous methyl prednisolone to halt further haemolytic activities. Once the nurse administer the drip, I could taste this intense and uncomfortable bitterness in my mouth. Such a strong drug. The prednisolone treatment cannot be halted suddenly and I still had to continue taking a tapering dosage after being discharged. Ergh.

18/4/09 : Another round of blood tests.
Hb = 10.1g/dL. Some improvement after the methyl preds.
Reticulocytes = 15.0%. Also some improvement.
WBC = 8.7 x 10^3/uL. At the higher end within normal range. My highest ever in weeks.
LDH = 1961U/L. Also major improvement.

By then, my urine colour has also cleared.

I was discharged that day itself. I was happy to leave the hospital. Being there meant my mom had to rush from home to the hospital to see me. And both her and dad were absolutely busy with house renovations and Karen's almost due to deliver. It's tiring for the both of them.

I felt like this was extra trouble that didn't need to crop up.

But then, the most ironic thing happened. I was about to drive back after sorting out my paperwork and bills. My car couldn't start. The battery was dead. I was pissed! The jockey guys were helpless with neither a spare battery or jumper cables. Random pleas for help from other parkers were futile. Doesn't anyone keep a jumper cable in their car?! I called a few people for help...also useless.

In the end, I had to call dad. He and mom rushed over from the new house to rescue me. I was never more glad to see anyone than them that afternoon!

On 22/4/09, Karen gave birth to Alexander. I was so happy for her and Eng Seng. Imagine, my sister has already stepped into motherhood. *Smiles*

23/4/09 : Another follow-up.
Hb = 10.9g/dL
Reticulocytes = 9.8%
WBC = 5.5 x 10^3/uL
LDH = 1066U/L

Everything showed improvement, and was heading in the right direction towards some normalcy. Still, Dr Ng was keeping me on the preds, albeit tapering to a lower dosage. No changes.

I'm beginning to wonder if I should go for a second opinion... But to Singapore??! Aaauuggh!

(more updates to come)

Blood updates (March '09)

26/3/09:

This time I went back for a normal follow-up. My test results were surprising! We found out...

Hb = 10.0g/dL (!!)
WBC = 4.0 x 10^3/uL (No infection, meaning all is normal)
Lactate Dehydrogenase (LDH) = 1285U/L (Normal range = 100-190U/L; LDH is a marker of red blood cell haemolysis.)

I did some reading on my condition. I wanted to understand more so that I can level with Dr Ng. Doctors in the private centres have too many patients and, unfortunately, do not spend as much time as they should to work around the treatments they prescribe.

I grit my teeth to say that I feel neglected to a certain degree.

All this while, he's always said there's nothing other than prednisolone and folic acid to take. When we added an iron supplement, look where it got me?

I don't completely understand all that I read, honestly. There's only so much of the biomedical terms that make sense. But I asked Dr Ng to let me do a flow cytometry. From the very beginning, he ran a Hams test, a Coombs test, and a bone marrow biopsy along with all the standard blood and liver profile tests. But a gold-standard, definitive test like the f.c. was never done. He reasoned that all those tests had already proven PNH.

They don't run the f.c. in SDMC and had to send the blood sample to UMMC's lab. It will cost me $$ too. As if the rounds of normal follow-ups and natural medicine are not already expensive. Anyway, the results come out 2 weeks later.

It's all this TV doctors like House and those Grey's Anatomy that made me realise medical investigations involve more than just taking the doctor's words. I want some quantifiable study done as proof. Them TV doctors...I do like them.

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Dad got anxious over me. One of his friends recommended a haematologist from Mt Elizabeth, Singapore to consult as second opinion. Though I'm tempted, I'll consider it after I get my f.c. results.

Blood Updates (February '09)

Well, whaddya know. It's been about 10 years since I've come to discover I had a rare blood condition. All this while, my family and I stood in faith that I've overcome PNH through God's grace.

The journey had been a long one indeed. It felt like a roller-coaster; sometimes the result of medication were good, then there are those terrifying "crisis" situations with me ending up hospitalised.

This year, I've decided to take this long held condition head-on. With the church declaring this year as the "Year of Jubilee of Opportunities", it's my jubilee in health! And why not, right? Right?!

I wanted to live with more wisdom and to make sure I become the best I can be. I've also been practicing speaking out in faith. In my capacity as a child of God, I have the power in my word to declare my breakthrough.

Still, right after Chinese New Year, things just seem to work against me. I'm journalling the events that happened and will keep updates as they come along.

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Sometime in late January, I was not very well. I became jaundiced for no apparent reason. I'll know it's terrible when I have to resort to wearing spectacles and squint to hide my yellowed eye-whites. This is the most tell-tale of signs.

It grew progressively worse after two weeks and I went to check up with my haematologist, Dr Ng.

13/2/09: Hb was a pathetic 5.0g/dL. (Normal range = 13.0 - 18.0)

White blood cells (WBC) is also low, at 2.7 x 10^3/uL (Normal range = 4.0 - 11.0). It means there's a prevalent infection.

He started me on prednisolone (10 mg/day) and a post-partum supplement. The latter had a high iron content, which may help with the blood count. I hate the preds because of its side effects. However, there's no other option either.

Mom and I also went to see Ms Chong, my herbalist doctor, in Tampin. A wholistic balance to the western medicine. She is marvellous. She does know how to diagnose my root symptoms. But since she's not using aggresive pharmaceutical drugs, her supplements slowly build up my organs and immune system - when the product mix is correct. Sometimes, there's no result from her meds.

This time, she recommended a herbal mutton soup for circulation, which made me feel very heaty; and a clear peanut soup for the blood.

Both physicians' treatments went well. My jaundice cleared a lot within that week.

Follow-up on 23/2/09:
Hb rose to 5.9g/dL. Still way short of 13.0g/dL.
WBC was 2.6 x 10^3/uL. Must've been some infection.

Dr Ng kept me on the preds and iron supplement. My blood pressure is verging on the high range. We scanned my records and the ranges have been progressively rising, especially during hospitalisation. So, he started me on a hypertensive drug with ACE inhibitor. The latter function works as a diuretic to help reduce water retention.

Hypertensives?! I'm not even old...or perpetually stressed! :(

The rationale for a hypertensive? Since my Hb is so low, my heart beats harder to compensate the oxygen carrying capacity. That's where I also have a slight heart murmur, which had been discovered since 2004. My echocardiagram back then didn't show any sign of valve or ventricular defect. There's no reason for any change by now. Thank God!

** At the onset of my medication, my body had to get used to the new regime. Firstly, the miracle mutton soup gave me vitality. So much, that I had problems going to sleep most nights. As for my hypertensive, even with 5mg a day, I start to feel groggy 2 hours after dosage. My morning work suffers. And my afternoon is a lot of toilet breaks. It was solved by taking the pills at night instead. Not much of an eureka. *grin*

(Anyway, if all these medical terms are lost on you, just look up wikipedia!)

----------------------

During this time, my parents got very worried. Anything that is indicated to help me with my condition, proven or not, is something they take seriously. If it's the soups, they'd insist for me to take more. If it was a fruit, dad will buy a huge bag of it. If it was a supplement, dad might say take double the dosage.

If I had to bathe in the Klang river, they'd probably dunk me in themselves! Just joking...

I'm really grateful for concerned parents. I don't want to worry them, but when my symptoms suddenly flare up, I really can't hide anything. And this time around, the jaundice blew up without any fever.

I started taking the Holy Communion everyday when possible as a step of faith to remember Jesus already paid the price of my healing through his body and blood.

Oggix blocked

Whatever any of you have been typing in my Oggix since.....err.....February, I CANNOT VIEW. The domain has been blocked by my computer's anti-virus or firewall. What's Trend Micro considered as, anyone??

Anyway, I'll reinstall another chatbox that will, hopefully, be spam-free. *pfffttt* So much for number verification when I still get countless spam posting from random sources! Oggix is disappointingly lousy.


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Work busy-ness, web-laziness, book-worminess, TV-addiction, new house-hecticness, blah blah...has not encouraged me to blog or be online much. My FB has been very neglected. But then again, with so many quizzes being posted, FB feels more impersonal than ever.

I have been in the hospital for a reason. And now there is another twist in my health story. But trust me, it's a good one this time.

My doc insinuated that I should write it for the irony and wonder it conjured. As for me and my house, on the other hand, we believe a miracle is in progress! I will blog out the experience...I'm not sure where and how to begin.

So it's coming out... I'm getting cracking.

What goes around...

Sometimes I just catch myself freaking out with my new environment. Customers can be demanding. Colleagues assume I know everything and get mad at me for getting my information mixed up. The other department has plans...we go for many meetings...everyone speaks in jargon I don't understand...

Major freakout!

Then I recalled... I used to be mean to new colleagues too. Ergh!!

Goodness, that serves me right. Anyway, here's to remembering it well enough for me to remember to be nice and more thoughtful to newbies. Because, oh my, we need all the help we can get.

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:: Experience is something you don't get until just after you need it ::