HI FROM DR RAZAK

first workshop for 2010

2010-01-20T22:43:00.005+08:00

Last weekend, MaxFamily had the first workshop of this year and we had it in Kota Kinabalu. It was a warm welcome from Sabahan people even though the weather was raining that day...

As we started, more participant came in. We started the session in a bit different way. Three patients were willing to make their testimony in front of audience and it really kicked off. I tried my best to moderate while keeping the ambience as cheerful as possible.

As usual, many of them expressed how grateful they were to have event like what they have just went through. Thanks to the doctor and the hospital staff in making this another useful event for the patients and their caregivers..

great meetings

2009-12-13T07:43:00.006+08:00

There were 2 great meetings for 2 consecutive weekends for Max Family and definitely has added another great milestone to the group achievement.

First, for the first time our charity visit happened at kids orphanage home. Smiles and laughter filled the house especially during the coloring and games session. We were so touched knowing that all these kids has been deprived of love and we do hope that our presence has brought ' a sincere piece of love' to share with.

Second, yesterday, I met with a quite number of JB CML friends and caregivers. Successfully, at the end of the session, they have formed their own group. This has been Max Family's vision i.e. each region/ centers to have their own small local support group and to work independently in the future. This also will make them self-empowered at a group level and hopefully they will be able to create a sustainable CML awareness at their local areas.

It just reminded me on how me and a few others has started the group 3 years ago.....:-)

Oh yes, my lung function test has showed some improvement from the last test during which I had a bout of cough attack....

charity visit

2009-11-20T22:00:00.005+08:00

I just got totally recovered from bad coughing episode which had left me in bad effort tolerance and breathless at certain times. The doctor advised me on longer leave so I could get better and enough rest. Now, I felt much, much better but still have to go slow on certain things and not to overexpose myself.

Having said that, me and my core group are ready for another significant event that we use to have around this time of the year... outing for a charity visit. This time, we feel that we should change the way we do things. We have plan to go to a centre that we think has possibly been least visited and taken care of from the public and we have found an orphanage somewhere around.

To anyone here who interested to contribute, do not hesitate to contact us at www.maxfamily.org

what is a support group

2009-10-01T23:03:00.014+08:00

When I first got to know that I have a leukemia, I almost confused with my own reaction.To be exact, I did not know how should I react. Slowly I noticed that a lot of emotions started to come in... feeling sad, worried, afraid and anxious to know what was the next thing that could happen to me. Frankly, I did not turn into tears until I started to break the news to my love ones, one by one.

I presumed that I will be okay since I am myself a doctor, and thinking that I am still fortunate to be always in a situation where everything done on me was in the shortest time and most convenient possible. I never felt that I need to share with other people burdened with the same problem like mine. I knew that I could have control on myself, I could find answer to any issue and think I could walk this journey alone without trying to find somebody like me to share the problem along.

Until one day, someone and few others like me, sit, talked and shared things that we have in common... i.e. living with cancer. From then on, I started to realize that it could wasn't me that need helps, but out there , there is always somebody who desperately need to talk to someone. Someone whom they feel could understand their feeling and relate what they are going through.

Now, I have made my own conclusion. Share what ever piece of cake that you have, you are making someone happier. That is what support group meant for..... it is a place to give and to receive...

CML awareness month

2009-10-01T22:52:00.005+08:00

My dear friend and followers, on October 1st, the Max Foundation open an awareness campaign to support CML survivors and each other around the world, by uniting people everywhere in the fight against cancer. Read on to learn more about how you can participate no matter where you live at:

www.themaxfoundation.org

summary after 2 years

2009-09-30T00:00:00.008+08:00

Post Transplant Period: 2 years and a few weeks

Remission Status: 3 times molecular testing: Undetectable for BCR-ABL protein

Current Treatment Status: Still on Glivec and to maintain indefinitely until next good news?

GVHD Status: Since last attack on the lung, no major issues

Blood Group: Must have converted to A+ve (my donor) from O+ve

Weight: Back to pre morbid status

Height: No loss of height

Hair: Longer but not as thick as before transplant

Skin: Getting fairer again from Glivec effect.

Appetite: Better

Career: Back to work almost one and a half year now and planning for subspecialty training attachment next year abroad

Stamina: At par..but can be down after exerting too much

Experience: So much to share........

selamat hari raya!!!

2009-09-27T23:17:00.002+08:00

latest follow up

2009-08-29T23:04:00.005+08:00

Retrospective entry:

I went for follow up today and getting my 5th time of 6 months course of intravenous Immunoglobulin (antibody) to boost my immune status. Not to say that I never appreciated how painful to be poked a few times for IV line but getting 3 times attempt make me more understand how painful it was especially when I had it accidentally being poked on the sensory nerve on the wrist! It felt like being struck by an electric current...

Owing to my poor lung function performance (no improvement), the hematologist feels that I should be on further gradual tapering dose of steroid. And together with Glivec which may depressed the T cell (white blood cell), I must really caution during these time of potential H1N1 exposure. I was being reminded to take anti viral to Influenza should I developed flu symptoms.

blowing time again

2009-08-19T18:54:00.002+08:00

I went for another lung function test yesterday. Blowing through the gadget a few times before getting the best result. My coughing which started the day before got a bit more after the test. I must have attempted trying to get the best blowing...

In the end, the result still not as good, from the previous test. Anyway, it was not a significant change, according to the respiratory physician. This result is so much important and my hematologist will really depend on this result as a guide to tailor the appropriate treatment and based on my progress...

july workshop

2009-07-18T20:22:00.007+08:00

As now we have to ensure a regular workshop every 3 to 4 months, today we achieved another mission and as usual, we had another significant event in Ampang Hospital. After the introduction of the workshop, I had a chance to give a short talk to the audience on what is a support group all about. Why we should have one, whom it is meant for and how can everyone in the CML community can uphold the group. I also showed to them our 'handsome achievement' so far... after exactly 3 years it was first initiated, we had 16 workshops (not include today's), 2 outstation camps, twice charity ward visit, 2 international event, 5 issues of newsletter, our website and a blog.

The event continue to follow with an art therapy, a session where we encourage audience to express themselves onto a piece of paper and share them with others in the hall.

During this workshop also, a few press media came to give a coverage. We do hope that we will better known to the public and make people aware of our presence in this challenging world of living with leukemia.

2009-06-26T22:24:00.004+08:00

Finally I managed to persuade my hand to write something in the blog. I have been 'lazy' lately even though I have no reason to be. After the latest version workshop in the east coast last month, I was busy preparing for my fellowship exam which, thankfully I passed. Now I can be half peace in mind and just need to full fill a few more requirement before I could go to San Diego for my attachment next year.

My latest follow up showed that I still keep in remission (molecularly). Means that the cancer stem cells are below detectable level. Even though my lung function test did not improved so much, my effort tolerance has been quite okay . I can go back to previous best level of physical exercise. Yes, I have gone back to the gym past one week.... at least at the doctor's advise.

and another one in the east coast

2009-05-26T23:24:00.010+08:00

Me and a few more group members of Max Family just came back from east coast yesterday for another patient's workshop. It took place in HUSM (the university hospital) like where we did last year.

The crowd was a bit smaller than KL workshop and a bit cold especially the initial response. I thought may be language and dialect was the barrier. Towards the middle of the event, things got more comfortable and patients and their caregivers started to get more responsive and lots of people were touched during a session where everyone of them introduce themselves and share their story. I think anybody can express themselves when they are given a chance to do so. I did chat with a few elderly patients (whom usually speak in a very thick dialect) but to my surprise, they were all very warm and friendly. More than half of them had attended last year event and this time they were really welcome our visit.

We ended in the late afternoon, tired but still excited with the response by the the east coast patients and they are waiting and looking forward for another event.....

another workshop

2009-05-24T08:10:00.004+08:00

Yesterday we had another workshop but this time we had it in University Malaya Medical Center. It was another great event and half of them were those who never attended any workshop. They felt so excited and touched by the effort that being put together and feel this could be an excellent platform to improve their life living with CML. As usual, time was not always enough to cater their overwhelming questions during the doctor-patients session.

Me and a few of the Max Family group member are going to the East coast for another patients workshop in Hospital Universiti Sains Malaysia. We hope to do the best for them tomorrow...

good news indeed

2009-05-12T18:22:00.004+08:00

I went for my follow up today and as I reached the hospital, the doctor has actually planned a repeat CT Scan for me this morning itself. So I went straight to the radiology department and got it done for the second time (hopefully it was not an overdose of radiation). Apparently, the previous CT was done not in the expiratory (exhaled) phase. For that matter, it will not picked up collapsed bronchioles (lung smallest airways tree) which was not seen from the previous CT. This may ascertain the diagnosis of Lung GVHD manifestation i.e. Bronchiolitis Obliterans)

I had a full Lung Function Test yesterday after a few times there were electrical black out during the process. The process involved inhaling and exhaling my breath repeatedly and I almost exhausted after everything was over.

The findings were discussed with the doctor today and given my previous baseline value (before the transplant), it showed some significant reduction in my lungs function. Buts, still its okay.... I still need to continue taking steroid for a couple of week more before started tapering the dose over 3 to 6 months......

resting at home

2009-05-07T21:14:00.003+08:00

I have been at home since two days ago and trying to catch up with my routine. I have noticed that I am more breathless when I exerted my self even with just normal chores. My breathing become fast and I sweat a lot and even drenching. The early morning cough is much less but can sometimes disturbing...

I went to the National Respiratory Center today, just to know that the appointment for full lung function test was not properly done for me. So have to come back again next week....

i was not there

2009-05-04T09:09:00.005+08:00

I missed another CML patient's gathering for the 3rd times. I was supposed to fly to Penang for a patient's camp on the same day that I got admitted. I was quite upset, since this is another big patient's gathering for the northern region and we have lots of thing to do during the event.

Anyway, the rest of my friends has done another amazing job and it all went with superb response.

in room 27 ampang hospital

2009-05-03T09:40:00.004+08:00

Sitting alone in this single bedded of Room 27. Reading through from the net of what I might going through based on symptoms that I am having now.

Knowing that I have been this far (almost 2 years) from post transplant days and for most of the time that I am reasonably well, I was quite denial that I might be having another post transplant issues i.e. transplant-related lung problem. Even though it is not confirm yet (waiting for CT Chest, repeat Chest X ray, Lung Function Test etc), the fact that I am post transplant person, it is better to think that it could be related. So the doctor will be more vigilant and hit the problem at the very early stage, before it become irreversible....

Spiritually, I must admit that it has let me down a bit. Especially when I have plans ahead pertaining careers, the support group that I am leading now and not to mention my whole family and friends.

The consultant hematologist just came in and this time I am more prepared to ask questions. He reminded me that he need to see the CT Lung result before making any conclusion. I would also need to go for Lung Function Test to add more information. He also outlined the treatment plan should the conclusion has been made. Basically, immunosuppression will be started and to boost immunity and prevent frequent infection, I ll be getting Immunoglobulin starting from tomorrow.

Physically, my breathing is still not like the way I normally feel. I can still feel some restriction at the end of each inspiration. Coughing in the early morning and chest uneasiness that awake make last night.

i see you for 24 hours

2009-05-01T21:23:00.009+08:00

Two days before ICU admission:

I was having flu and cough for the third times within a month. My body started aching.

A couple of hours before admission:

I was getting ready for work when I got increasing shortness of breath and within minutes, it got worsen. I have to call my wife who was still in the hospital for on call duty. She rushed home and brought me to hospital immediately. In the Emergency, I was pushed to the resuscitation area and everything was swiftly done to make me comfortable.

In the ICU:

Things were better by the time I reached ICU. I was put with all sort of monitoring cables and lines. The next few hours, one after another, doctors came in and examined me, including my hematologist. Most of them felt that I had a pneumonia but my hematologist added that he need to rule out lungs GVHD (graft versus host) i.e. Bronchiolitis Obliteran. I hope it is not. I was started on antibiotic and anti viral infusions.

Now:

I am already in the normal ward. Feeling much better without oxygen support. But need to stay longer for antibiotic and anti viral and also I need to go for CT Lung next week to confirm what is going on.

frequent infection...

2009-04-22T22:53:00.004+08:00

I have noticed lately that I can easily caught by viral-kind like infection i.e. intense muscle and bone and joint pain, chills, rigor and even intermittent fever. I think it was not more than 2 weeks ago when I really had bad symptoms together with breathless chest pain before I got it again 2 days ago. But this time it was a shorter course without any treatment.

I told my hematologist when I met him during follow up yesterday and he said, it could be a 'normal' happening to a person who's taking Glivec regularly. Glivec could to some extend may have interfere T lymphocyte (white cell) function that used to fight common infection. He continues advised me to take a course of antibiotic whenever I have any sign to suggest that it is bacterial infection.

finally reached home

2009-04-06T05:48:00.011+08:00

I found this in Barcelona

I spent a day and 2 nights in Barcelona at my friend's place. Not like in Lisbon, here I really had great time since he brought me to all interesting places and we just walked from one place to another the whole day. We went to the Olympic Stadium, Sagrada Familia, Arch de Troimph, Gaudi park, the marina and every street in the city. Finally we ended up walking for almost six hours.

Since he stays at really at the center of tourist street (Las Ramblas), I can see lots of interesting things just down stairs away. This street has lots of art stuff. From painting, street musical band and even pantomine (human statue).

I flew yesterday and reached home safe. Tired but relieved.

ola lisboa!

2009-04-04T03:54:00.015+08:00

I managed to skip early from the meeting today as the afternoon session was for meeting for members of the society. So, I took the chance to quickly changed and got down to the street for outing. Knowing that I have very little time, I took the city tour bus (hop in and hop off) for city sight seeing. However, I did not hop in and off since I was in the second last bus of the day! So the pictures that I took only taken from the top of the double decker bus. Still interesting though!

I got down at the last stop of the tour bus, took a short walk in the commercial and tourist street, bought somethings to bring home before I took the normal bus and got back to my hotel before it's dark....

transit in amsterdam

2009-04-01T12:53:00.004+08:00

I am in Amsterdam airport now and waiting another 6 hours before depart to Lisbon. I ll be there for 4 days attending the European Pediatric Orthopedic Meeting before drop by Barcelona to visit my friend who is doing attachment there.

It s quite cold here and I hope the sore throat that I am started to have now is not getting any worse. I have noticed that I could easily get sore throat and flu recently. Hmm.. I forgot to bring antibiotic along...

MaxFamily is holding a small workshop in the east coast (Kuantan Hospital) on this weekend and again I could not join them. Anyway, there will be a few more workshops coming ahead and I will make sure I am around.

it's 0% !!!!

2009-03-05T17:14:00.003+08:00

I got the email which I 've been waiting for the last couple of days. It's from the doctor whom I get the blood test done in Singapore last 2 weeks. The result showed zero percent of cancer marker detected!!! I was so much excited since the previous results for last one year after the transplant was so much difficult to get it down to zero level.

I presumed Glivec has somehow able to make whatever the result down to this level now. Thank to God. Thank to my dear doctor (his prediction has always been true), thanks to my family, friends for their continuous love and support.....

To my CML friends, whatever the hardships that we are going through, there is always a happy moment along the way...

first workshop for 2009

2009-02-26T11:19:00.004+08:00

We will start to kick off our program this year with our workshop in Hospital Ampang this coming Saturday 28th Feb 2009. Unfortunate for me that on last minute I have to go for a meeting in Port Dickson representing my department for hospital meeting. So much upset especially we are planning to unofficially launch our society to our patients during the workshop.

Anyway, I believed the rest of my friends @ core group members can do without me around. So sad that I ll miss the exciting moment... Good luck my friends. Now we all have to work harder.

blood test and short vacation

2009-02-14T07:15:00.005+08:00

Me, my wife and my 2 kids are going to Singapore today. I am meeting the Singapore hematologist at Singapore General Hospital for some consultation and blood test. Since I used to have blood test sent and done in Singapore all this while, this time I need to have another one sample taken 'fresh' from my vein. The result later can help in countercheck the similar test if Ampang Hospital started their own. If the value has not much difference, I don't have to have six monthly regular blood test sent to Singapore anymore.

I took the chance to take my family along to have a short holiday....

Ooh, last night, me and my group celebrate after MaxFamily Society has been approved as a registered society.

very much awaited good news!!!!

2009-02-10T23:32:00.003+08:00

Guess what? MaxFamily is now a registered society!!!! The letter got to me today and theofficial registration date was 30th January. After almost 2 years waiting, amending and keep amending the documents for application, we are now a legal society.

In another word, there s a lot more work to do.....but now I need to go to sleep first because it s late now. Tomorrow. I ll get up with a whole new spirit and enthusiasm.

thank you 14th december 2008

2008-12-15T22:30:00.015+08:00

thank you all my friends*, who's willing to spend

spending your time

for kids who will always be in your mind

spending your effort

for something little out from your pocket

spending your smile

for aching both legs after walking more than a mile

spending your heart

for exhaustingly working so hard

spending your loves

and sharing it with us....

*my friends are those contributors, volunteers, ward doctors and staff and all the kids and parent in the ward

it all set!

2008-12-13T18:51:00.007+08:00

Some of the books

Hampers, gifts and bags are ready

MaxFamily is visiting Pediatric Ward tomorrow! I felt so happy that the responds from the contributors were huge. We had a 'packing day' last week and now it all set.

We will be in the ward from 9.00am to about lunch time. We have a great project called "Smiling Pillow", a small craft making activity with the patients in the ward, a small idea that I am sure will turn into an exciting and fun thing do togather with the kids later. Apart from that we are bringing clown with his stuff and magic joke and Santa Claus that will surprise them with gifts.

Thanks again to contributors, my friends and volunteers.

Packing day

contributions coming in!

2008-11-23T19:38:00.003+08:00

I have started getting contributions from friends and friends' of my friends. I know they are good friends and they really interested to give a hand. I guess everyone would love to take part but sometimes it is the lack of chance that limits them. Anyway, thanks for everyone's interest. Sure I ll put up photos of the visit when everything over.

pediatric ward visit

2008-11-03T00:24:00.004+08:00

As like last year, we at MaxFamily are planning to do another charity visit to the Oncology Ward in Pediatric Institute (also place where I am currently working) this coming December. I did not manage to join last year since I was still in the recovery and 'confinement' period after the transplant. I knew the event was quite significant as the kids in the ward were really enjoyed our visit and the gifts that we brought for them.

I started emailing all my friend if they interested to contribute anything as we may want these unfortunate kids to be happy, as happy as we were during our past childhood times.

october workshop came again!

2008-10-18T21:40:00.004+08:00

the birthday cake

Wow, today we had another workshop and as usual it was another great meeting for us. In conjunction with Max's birthday on 19th October, we hold a regular meeting and workshop during October every year.

As it always do, this time there were significant numbers of turn out and a third of them were new comers. They really used this workshop to learn more and ask lots of questions during the session with the doctors and I felt so glad they all did.

So guys, see you again in Jan 2009!

meeting my 'old good friend'

2008-10-18T20:30:00.006+08:00

I went to the hospital two days ago for my regular follow up apart from getting my final monthly infusion of antibody (IgG). The blood test for CML marker molecule (bcr-abl) result from Singapore that was sent a month ago was also ready for review and I really anxious to know. This result will give me and the doctor an idea what to decide on next. Ideally, traces of CML marker molecule should not be detected after about a year after the transplant. In my case, the last 2 results within a year of my post transplant period was still positive but at the very low value.

So... the result is still positive (it is slightly lower than the previous one). The options (if the blood result still positive) were discussed during last follow up and this time around it was easier for me to understand and just follow the plan, that is to go back and take my 'old good friend' i.e. Glivec again, may be for a couple of year. It was not a hard decision though, since I had used to to it before.

SELAMAT HARI RAYA

2008-09-30T21:06:00.005+08:00

Dear all Muslims

SELAMAT HARI RAYA AIDIL FITRI
MAAF ZAHIR BATIN

I do still remember what the feeling was a year ago when I was still in the recovery period when there were still a lot of restrictions. Let me tell you, at this moment when everything seems coming back to your life, you may not remember how hard it was during the difficult times and you may not even remember that you have gone through those days. That's why, always believe that at any time you feel it is so much difficult, there 's a lot more time where everything seems so easy. Always say thanks to Him.

AFTER ONE YEAR

2008-09-19T21:47:00.003+08:00

Yesterday was my 'first birthday' since I was transplanted and growing with 'new blood'. It was 18th September 2007 when my brother kindly donated his blood. Looking back to all those days, it was full of emotions and I am glad it was not that bad, at least if I were to see other patients who may have more difficult journey. I would say it was a journey with amazing experience and having said that I always feels that I am always a more fortunate person despite the burden from the transplant and that is how I appreciate the whole thing.

And now after one year, I have got back my 'life'. I have started working and doing my usual stuff (operating and seeing my patients in the clinic- half of them were not realized my 'comeback' and those who did, ask me why I am not as 'white' as before!). I have gradually catched up with my study (I got an exam next year) and started to plan my fellowship attachment now.

I am also getting back on track with the CML support group and I guess there are a lot more to do. People and friends around me always tells me to take it easy and do not stress out. Yes, they were true since my physical and mental may not have reach my previous level, yet. I do always get 'bugs' and it will take a longer time for me to completely recover. But on the other hand, getting back to 'work' make me feel more healthier and lively. At least they see me like what I was before and more 'brightful'.

'down' for a few weeks

2008-09-04T12:56:00.006+08:00

I have not been writing for quite sometime because I was not really well for the last few weeks. It took me longer time to recover from common flu and throat infection. Furthermore, I guessed my 'stamina' was also not that at par. I have been travelling a few times past few weeks and I noticed that I was easily exhausted.I took leave from work a few times during that time when it was really 'down' for me.

I managed to join the Hospital Sultanah Aminah, Johor Bahru small meeting with CML patients. Even though it was not like as big as our previous meeting/ workshop, it still means a lot to the patients and they really appreciated our visit.

Among the patients (half has gone back before picture session) with the doctor and us.

I also managed to attend my wife 'big day'.

Finally, selamat berpuasa to all muslims.

colours of hope

2008-07-27T23:10:00.007+08:00

Another event for CML patients and their caregivers. Thanks to them for making this event another success. We took this 'get to gather' chance by organizing workshop and using art as one way to motivate them. We ve got Sahimi's (our comittee member and artist and his friends from Central Market) to help handle the workshop. It turned out amazingly and never knew that most of the patients and their family could be so expressive when they were given a chance to draw and show up their talent....

So much glad it' s another success

measles threat

2008-07-11T12:44:00.003+08:00

My daughter is having measle. She had fever 2 days ago and when it start setlling, all those typical rashes came out. Immediately I knew that it would be a threat for me since all antibodies that I have from chilhood immunization lost after the transplant.
So, now I am in the day care getting immunoglobulin (antibodies) infusion for 2 days.

the latest result

2008-07-09T07:21:00.003+08:00

I had a follow up the day before yesterday and had met up with the hematologist. The result to assess the residual disease (PCR for BCR ABL protein) that was sent to Singapore a month was ready. There was a slight increment in the level but having only one result to compare with (one taken 6 months ago) does not give any significant value. Furthermore the level is still much below desired level and I am still in the 'major molecular remission' i.e the amount of cell that still having the potential cancerous molecule is very minute. Anyhow, I will have another testing in another 3 months to see the progress before discuss on the possible options.

After a few days enjoying the anti fungal 'body spa' and anti fungal pills, I would say that there is some improvement from the extensive 'acne' that I am having. There is much less new lesion now. Otherwise, I could have a skin biopsy to confirm the actual problem.

it is fungal!

2008-07-04T20:38:00.003+08:00

I met the dermatologist today. Afer she had a look on my face, neck and body, she was really convinced that it is a fungal infection. I can't really remember the scientific name but apparently this fungal is a kind of that usually resides our skin but since I am on immunosuppressive drugs (steroid), this organism is happily overpopulating and multiplying and producing acne like lesions.

I was given all kind of anti fungal i.e. bath soap, shampoo and cream. Hopefully it will work since this problem can sometimes be irritating from itciness.

2008-07-03T11:53:00.004+08:00

colours of hope

"maximize life workshop for CML patients and caregivers"

We are holding another workshop this coming 26th July ( Saturday) in Ampang Hospital and this time around we had choosen art session as a medium to motivate patients and their families. This is also in terms with art contest and we are hoping patients and their family can sit togather and produce some art pieces.

This event also as part of our series of workshop that we hope to have it regularly every year.

great meeting in baveno, italy

2008-07-02T12:06:00.010+08:00

Me and Fan, both of us representing our MaxFamily group with our posters

During one of panel discussion

Baveno town viewed from the boat ride

I am safe and and back to Malaysia yesterday. Apart from a bit of jetlag, the rest are okay and I am still excited about the meeting.

Baveno is a small town by the side of elegant Lake Maggiore. The town is a bit quiet but yet I would say a excitingly beautiful place.

I met a lot of great people during the meeting representing support group, physician, drug companies and most of them comes from European and Latin America countries . The whole meeting was about getting to know latest updates on CML and GIST and its treatment and also about advocacy and networking among various support group. I have learned a lot from the meeting and hope it will be another motivation for us to push the group to the next level.

I also took a chance to talk to one of the speaker who apparently a transplanter from Hammersmith, UK and discuss about my progress.

I am seeing a dermatologist next Friday for my bad acne problem and next week I am seeing the hematologist again to review the PCR molecular result.

With the Novartis officials

repeat blood test

2008-06-16T14:54:00.004+08:00

I went for follow up the week after I came back from Korea. My blood sample also taken for repeat PCR test (to be sent to Singapore) and I hope the result that will come in next couple of week will show some reduction in the residual disease. Otherwise, there would be some change of plan, I guessed.

The doctor was happy when I told him that my appetite is getting better and my mouth is not as 'tight' as before after I was restarted on steroid. Hmm...talking about steroid, means that I will be bloated again, bug by the gastric uneasiness and labile mood. Anyaway, it is good that it can control the GVHD effect from overwhelming and do more harm to my body. I will be on monthly Immunoglobulin infusion for the next few months to boost my body immune.

My face is still full of acne like lesions from the GVHD effect but its okay. Oh yes, my weight haven't gone up yet. May be I should eat more and get back my 5 kilos, as been advised by the hematologist.

Jeju Island

2008-06-08T09:01:00.016+08:00

I dropped by Seoul while waiting for my next flight to Jeju in the afternoon.

The quite town of Jeju City in summer.

I came back back from Korea yerterday. It was a great trip and Jeju is a nice and quiet place to stay. It was summer and the weather is still cold and windy. The meeting was good and I learned a few more new things there. My paper presentation was also great when they were impressed with my study. Anyway, I managed to find time to take a short trip to one of the tourist attraction the day after my presentation. We (me and my friends) took a bus from hotel and stop at this place Seongsan Ichulbong where the mountain rise peak located. It is located at the east of the Jeju Island and it took us one and a half hour to reach there by bus.

This mountain crater was once a small volcanic eruption under the shallow water and later became a small island which people come to see the spectacular view sunrise (of course I didn't manage to see since we reached there almost noon). We have to climbed 1.8 km up and that was so exhausting even after we have to stop a few times. It took us about 30-45 minutes but the view was so much rewarding.

We were welcome by this Uncle 'Dolharubang'

The crater at the mountain peak

The view of the town from the peak

'Hallabong', the special orange only planted in Jeju Island

We went back to the hotel by taxi since we were too tired to be in the bus again and I managed to catch the workshop of the meeting that afternoon.

last 2 weeks

2008-05-30T20:16:00.003+08:00

Sorry for not writing in the blog for quite some time. Since I came back from Kelantan for that event, I was not that well. I used to have headache and dizziness. And after that I went to Shah Alam for my PTK course ( on job training course) for 8 days. The schedule was tight when we have to do a lot of assignments and most of them have be completed before we go back. Towards the end of the course, I was hit by a fever, cough and flu and to some extent I had to skip a couple of classes and the group discussion session. Anyway, its over.I have another long assignment need to be done and I have another 10 days before I need to pass it up.

Next week I am going to Korea when my scientific paper was accepted to be presented. I never expected it to be accepted anyway since I was invited to attend CML leader summit in Milan end of next month. I think that I should not miss this summit since it is a good place to meet those people from all around the world.

Oh yes, I met my doctor yesterday and after telling him all the increasing symptoms that I am having lately, he was a little concern that my GVHD efffect is showing more than limited that he want to see, and it has cause some quality of life issue. He advised that I should restart on steroid again. For your information, I continued to loose some more weight and I am as wasted when I was first strike by CML last 2 years ago. This is partly that my appetite is not doing good and I have a limited choice of food due to my mouth problem. I hope that this could be temporary as I am always wanted to be back to what I am..

another leap and reach out in kelantan

2008-05-12T10:53:00.012+08:00

10th May was another leap for us. This year, our mission is to reach out more CML community outside of Klang Valley. HUSM which caters most CML patients from Kelantan and Terengganu was selected to be the event venue. Thank you to HUSM Hematologists for being so supportive in making this event another sucess for us and a good start for the local CML community.

The turnout was great and unexpectant despite half of them comes from some distance kilometres away. Thanks to the patients and their families. We learned a lot from the workshop, obviuosly we learned from them. We learned that the approach may be a bit different and tough but we believed we have done something worthwhile and this was showed by patients eagerness and how they are so looking forward for the next meet up!

I flew back on the same day in the evening and felt so tired but so much glad that it was another great great happening.

Next week our mission will continue in Penang and hope it will be another great leap...

another great event

2008-04-27T22:49:00.010+08:00

Yes, we made another great Max history yesterday. This time, I was so much excited for two reasons. First, this was the first event that I was able to attend after the transplant and secondly, I was amazed with the turned out and how much passionate and enthusiastic they were during the workshops. The programmes went as planned togather with the surveys.

The subgroup during the workshop

My presentation

See how excited they were!

Thank you doctors

Thank you guys!!!

So much satisfied after it's over

another big event tommorrow

2008-04-25T07:18:00.003+08:00

Tommorrow will be another big event for Max Family and the Max Foundation. So far, about 130 people are coming. That includes patients and their care givers, volunteers, doctors, nurses and of course us, the committee.

We also have 2 friends coming from out of this country. Angeli, the Max Foundation program officer from the Seattle office and Wirat, from Thailand Max Station.

I picked up both of them at KL Sentral last night and brought them to our Max Office before we went for dinner. Good to see Wirat again (he was here last Malacca event) and to meet Angeline for the first time. Hope both of you enjoy Malaysian stuffs....

the meeting is getting frequent

2008-04-21T21:31:00.006+08:00

One of our 'teh tarik' session

For the past couple of weeks, me and my friends had more meetings. First we entertained our good friend, the Max Foundation head and secondly as part of our meeting and discussion before the next patients gathering event on 26th April.

On one of the day, we took the chance to have it in one of our couple's house since they haven't 'warm' their house since they shifted to their new home. We had a great meeting and of course great food after that.

At Shikin's house, I gave every member a small 'not so art' piece as my appreciation for their continous support

Dear friends, if you don't leap, you'll never know what it's like to fly. So keep leaping.......

now my eyes were drying

2008-04-21T20:45:00.006+08:00

Not long after I started to have mouth problem (which is still burning in pain even when I am taking the least spicy food), I thought I was further stumbled with eyes problem. I noticed that my eyes get easily dried and they tend to stick togather especially when I get up from sleep (the usual symptom when you get conjunctivitis). I promptly left my contact lenses routine completely, in fear that it could worsen the symptom.

Last week I went to see the opthalmologist and after he did a test, it was a problem of tears production and probably from the GVHD effect. Now I have go back to my glasses and intermittently put eye drops to make me feel more comfortable.

The hematologist had told me before that I will have some limited chronic GVHD and to some extent will affect the quality of life. I guess, it is unpredictable when it come to how long that I will have this problem. Though, I am still not as bad since I can do most of the things that I used to do. Yeah, I have tried doing surgery recently and it was fine, except for some mild tremors.

the meet up again

2008-04-15T22:17:00.004+08:00

before 'makan' time

before 'serious business' meeting

Pat has gone back to her country. I must thank for her visit and support in making every MaxFamily missions success!!

my Seattle friend visit

2008-04-08T21:40:00.003+08:00

Today, I just fetched my good friend from Seattle. She is the Head of the Max Foundation and happened to be so close to us since her last visit during CML last event in Malacca. As she always promised, she flew all the way to meet us again, bringing more enlightening spirits for us to be as passionate as before, when the support group was first formed. I guess, I must get back to my support group as soon as possible and it is not that easy since I do not know where exactly to start. However, after we had a 'short brain storming session', I have a lot of reasons to speed up and gets going!

It's a good news indeed!

2008-04-08T21:18:00.003+08:00

I felt great after I met my doctor yesterday. About my mouth problem, he told me not to worry, because infact it is a sign of GVHD and and since it is mild and limited, I will have benefit more than it could harm. On the other hand, I also developed disturbing eyes discharge. I thought it could be a conjunctivitis, but in actual fact, it is another common sign of GVHD. So far, I could tolerate the symptoms by being more caution on taking any food. The doctor also added anti fungal syrup for me to avoid oral infection.

My work? As I told before, I am more than happy to be back again even though it is not getting back to the normal routine. I haven't start doing surgery yet. Just being around and makes my self comfortable.

my mouth is 'burning'

2008-04-02T22:15:00.001+08:00

Lately I noticed that I could not take spicy food anymore. (Frankly speaking, I have slowly started taking spicy food after 3 months post transplant and I didn't have any problem then.) Everytime when I take the meal, I could feel the burning sensation inside the mouth - the feeling like taking a handsful of chillies. After that, I just could not continue eating and it just killed my appetite. When I see inside my mouth, I could see white patches all over. No wonder everyone told me that I am so pale, when in actual fact my lips also turned whitish. Initially I thought it could be an 'oral trush' i.e. fungal infection, but when I had a chance talking to my colleague (pediatric oncologist) over a casual discussion, she thought it could be a sign of GVHD (Graft versus Host Disease). Apparently this GVHD is a good effect since it is an effect that could wash away residual cancer cell but not to the certain extent that it may harm the host (me myself). Anyway, during the last follow up I was warned about having this GVHD problem when the anti rejection drug was further reduced before completely cease next week.

I ll be seeing the doctor next week and hope he will say some good news.

my first day-working back again

2008-03-25T13:10:00.003+08:00

Yesterday was my first day back to work after almost 7 months I was away. It was a great time meeting with all the people that I used to work with. Everyone also excited apart from being a bit surprised from the feature changes that I had now. My lack of hair, tanned skin ( I am not as fair and white as before- the effect of Glivec) from the effect of chemotherapy has made some of my colleague couldn't recognized on the first look.

But I am glad that they all as warm and kind and looking forward to see me more like I used to be. For the time being, as been reminded by my physician, to take it easy for the first 3 months, to limit the contact with patients. So I just hang around in the office and the most I went to the operating theatre just to say hello to the staff.

By the way, I am still coughing away from throat infection since a week ago and it seems a bit slow to recover. Hope it is not serious....

after 6 months

2008-03-17T22:38:00.003+08:00

It has been 6 months now from my transplant day. I remembered one transplant survivor told me, time flies faster than you think when everything started to become 'normal' around us.

For now, I still visit the hospital for follow up. The wound on my chest has further shrunk in size. I positively think that this wound problem will finally over, and completely heal in another month or so.

Last weekend, me and my family went back to our hometown, the last trip that we had was 8 months ago. We spent the whole period of school holiday at both my mom and in-laws house. It was a great time for me. I managed to visit my friends also.

Starting back to work? Yes, I am going back to hospital (as a doctor) next week. Anyway, its going to be an 'office' job first, as assured by my boss, at least for a couple of weeks, when I completely stop taking immunesuppresive medicine.

The last 6 months had given me a colourful experience, eventhough not as tough as other patient. I had encountered many people and also spend a lot of times and in many ways, I hope, will help me to be more patience.

the much awaited result

2008-02-26T14:40:00.007+08:00

As usual I went to the hospital yesterday. First, for my post transplant follow up and secondly for wound dressing.

The much awaited blood result sent to Singapore was ready and it showed that I do still have very, very minimal residual 'tracing' of this cancer marker. However, it is very much below the acceptable value and should not raised any unnecessary worrisome. I still feel so much thankful to God. However, yes, I would be more than happy if the result showed that I do not even have any 'tracing'. Having said that, the next possible plan is to get my brother to again donor his white cell (lymphocytes) for me. These lymphocytes can act as another troop of army to take out those remaining potential cancerous cells. The harvesting procedure is very much similar for him and the infusion process on me is very much minor if compared to the normal transplant process. Albeit, the consequence of GVHD is not something to be considered less seriously. The procedure will be planned after I completed the Cyclosporin, i.e. after 6 weeks times from now.

By the way, the wound on my chest has shown a lot of improvement but still a long way to completely closed. I just hope that it will be sooner so I could resume working in April.

after the third surgery

2008-02-22T14:01:00.003+08:00

The third surgery went smooth but I was shocked when I first saw the second wound. It was much bigger than the first wound and obviously much uglier, sitting at the base of my neck. For a moment, I just sat and couldn't believed that the problem could ended this bad. I have nothing to regret, only a feeling of a 'lost'. A lost of something that you used to have. People says, if you want to gain some, you have to lose some. I became more aware of having and appreciating good health lately. Having repeatedly admitted and repeatedly felt how it was being a patient, talking to other patients (not as a doctor) has kept me reminded to be as wise and empathy.

Today, after spending 5 days in the ward, I was discharged home. I still have to go to the hospital everyday for wound dressing. I must tell how good it was to be home again, at least it is still the best place to feel good spiritually.

I guessed the wound will get better, in the end. Just be more patience, even though it has make my daily movement limited and restricted.

*I hope I don't pick up a nasty 'bug' on the wound.

the third surgery

2008-02-18T13:02:00.003+08:00

I just got called from the hospital. The surgeon has reviewed the scan and they feel the sinus is quite simple and just lied under the skin. Not extending in to the deeper structures on my right chest. I developed another small abscess along the tract of Hickman's tunnel, just above the collar bone. I guess the infection is still active and trying to find its way out through another door. That was the other reason I keep reminding the surgeon on what is their next plan when they seem to 'lost'.

I will get admitted today and hope this would be the last surgery for this quite distressing problem.

the good and not so good news: no. 2

2008-02-13T12:32:00.006+08:00

For the whole last week, I was admitted. It was not a preplanned decision as I was supoosed to be discharged soon after the daycare surgery. The surgeon felt that I should have the daily 'aggressive' dressing in the ward. The sinus ( i.e the persistent Hickman's tract ) still and even larger than before the first surgery. Now I have an even larger and longer (about a little finger length tunnel) under the skin of my right chest. It has been more than a week now and the team feels that I ought to have a special dyed scan to see the extent of the 'not so SMART' tunnel. Oh.. I just got informed that it is going to be next Friday. The further plan depend on the scan findings. I just could not imagine what surgery I am going to face next...

Anyway, despite all those painful news, I am still in joy when the F.I.S.H (Flourescent In Situ Hybridization) test showed a negative signal. In a more simple meaning, I do not have anymore potential blood cells that carry the cancer signal, at least from the standard test. I am still waiting for another more sensitive test result which was sent down to Singapore about 2 weeks ago.

not another surgery

2008-02-03T22:57:00.000+08:00

Not long after I was so much excited, the wound over my chest that I thought would have completely closed by now, does not happened. It has gone down to the smallest size but failed to dry. On that moment, I knew that the problem is not going to settle at anytime. So I went to see the surgeon again and as I had expected, I need to go for another surgery and hope this will be the last one.

Tomorrow I will be admitted as a day care patient and going home as soon after the surgery.

after 4 months post transplant

2008-01-29T12:50:00.000+08:00

I went to the hospital yesterday. Now the follow up is once in 2 weeks. My blood results were good.

The wound over the chest is still there but it has so much contracted and I am doing the dressing my self every two days. I just wondered why the previous tunnel tract became thickened and hard and I could feel a tightness everytime I turn my head.

I have lose about few kilos since a couple of months ago, but I am still above my usual body weight. My hairs getting more appreciated but it still thin and as I can still see the scalp underneath.

I have been calculating on when is the best time that I could go back to work. The best time could be when the antirejection pills (which now on tapering dose) completely stop in another 2 months or maybe I can use the "hair test" i.e. when the hair is thick enough and completely covered the underneath scalp, then, that could be the best time. Hahaha..... Hopefully eveything will go as planned.

Any better ways?

2 weeks after the surgery

2008-01-23T12:11:00.000+08:00

The wound over my chest became smaller after 2 weeks of everyday dressing. I guess it will completely closed in 1 week or so. The previous Hickman's line tract is still hard and at certain area became a nodule-like mass. Just hope that it is not another collection of infection. The whole last week, I went to the hospital where I work to have the dressing done and I took the chance to meet my colleagues in the department. Some of them suprised since it was their first time we met each other after almost 4 months. Great to meet again the people that you used to work with and it makes me so excited to come back to work...

the surgery

2008-01-15T15:33:00.000+08:00

I was admitted in the surgical unit last week. The surgery to explore the wound on my chest went well. There was an infection over the previous Hickman's line scar and the surgeon had to debride (clean) and removed the opening and extend the wound. Now I have about a 5 cent coin (but deep) size wound on my chest and get it cleaned and dressed everyday.

Otherwise, I feel much better. My blood count was steady except that my Hemoglobin still low making my stamina a bit low......

good and not so good news

2008-01-08T22:23:00.000+08:00

My last medical review revealed that the virus was not detected on the last blood checkup. This was the effect of daily anti virus that I got for 2 weeks. Good!... in the sense the it will not interfere with the blood cell production anymore. Now my platelet count continue to rise, whereas the white cell count stabilize within the normal range.

My kidney function has return to normal. I was not on steroid anymore and my full moon face has been less appreciable and my weight started to reduce also.

Now, the not so good news is that I have my previous Hickmans line tunnel infected. I noted that the previously completeled healed wound started to break down and continously 'wet' and when I compressed the area it was painful and pus started to come out. I took a course of standard antibiotic but it didn't help. I guess either the germ is more aggressive or the infection took deeper.

Anyway, I saw a general surgeon today and she advised for a minor surgery under daycare tomorrow. I will be admitted tomorrow morning and the operation will be under general anesthesia. The site still painful and I guess the low grade infection had caused me a bit lethargic past few days. I hope it will not become a chronic problem. My appetite? Still catching.....

after 3 months+ post transplant

2007-12-29T12:33:00.000+08:00

Hi all!

Sorry for not writing for so long and causing unnecessary overconcerned among everyone. I wished I could write an entry everyday until my hundredth day but....the fluctuating condition didn't allow me to do so. I just didn't have enough spirit...apart that I was physically weak past few weeks, especially so when I had to attend the hospital everyday 2 weeks ago for antiviral infusion. I just could not explained everything but it was a real feeling that I am too weak or too lazy to open my computer and start writing. Perhaps the cell count was still unstable and true enough my hemoglobin level (cell that carry oxygen) was low, left every task breathless for me.

Hence, I was 'fuelled' with 2 bags of blood few days ago and now I am feeling much better.

Other progressions:

1. I had a repeat bone marrow aspiration last 2 weeks to assess disease residual and the result is still pending.

2. I have completed the daily antiviral infusion and now waiting for the blood result of the viral indicator level if it still high or not.

3. I have started 'going out' to the community when I had a Hari Raya prayer and attend weekly Friday prayer. But still I need to take precaution not to be in a large crowd area and the rest I left it to the God.

4. My hair started to grow and more appreciable since the new hairs are so fine and scarse (like a newborn baby). I hope I will have a thick one later on....

Okay now. I would like to thanks everyone that keep giving their support and I will write as frequent...bye and Happy New Year!!!!

day +85 post transplant

2007-12-11T16:21:00.001+08:00

day +84 post transplant

2007-12-11T16:20:00.000+08:00

day +83 post transplant

2007-12-11T15:53:00.002+08:00

day +82 post transplant

2007-12-11T15:53:00.001+08:00

day +81 post transplant

2007-12-11T15:51:00.000+08:00

day +80 post transplant

2007-12-07T17:58:00.000+08:00

I have not been writing for the last 2 days. Kind of busy....busy coping with the feeling of uneasiness and nausea especially towards the evening. Since a few days ago also, I have been visiting the hospital everyday for the daily dose of anti viral infusion and it has occupied half of the day. By the time I reached home, I felt tired and slept the other half of the day. My hemoglobin (red blood cell) also always on the suboptimum level making every task and activity a tiring one.

day +79 post transplant

2007-12-07T17:57:00.001+08:00

day +78 post transplant

2007-12-07T17:56:00.001+08:00

day +77 post transplant

2007-12-04T12:13:00.000+08:00

I am writing this entry while waiting the infused medication to finish ( 11 bottles of infusion at a snail pace). Yesterday, there were a lot of development. Some were joyful but most were painful.

1. I was shocked when I was told that I have evidence of CMV (Cytomegalovirus) reactivation from the lab result. (Most people have exposure to this virus, but in immune deficient case like me, the virus can be reactivated and cause disease). But later, I was slightly relieved when the doctor explained that it didn't pose symptomatic disease yet, at least....and most of the time it can be well managed by daily infusion of anti viral. That means I have to get the infusion everyday including Saturday and Sunday, at least for the 2 or 3 weeks.

2. I started to feel not quite right when I noticed the exit site of my Hickman's catheter on my chest kept always "wet" and with surrounding pain. I told the staff yesterday and they seem agreed that I should have the catheter taken out. Good news that I will never have that inconvenience and tedious care of the catheter anymore...but I never knew that the removal of catheter experience was that horrible. I was so tensed and paled and sweating and wish I will not have that kind of experience anymore. (Usually, after sometime, the catheter will have at its certain portion strongly stick to the surrounding tissue making it quite resistant during removal. Ironically, some patients did not feel much pain...may be in my case there was ongoing inflammation/ infection adding to the extra pain). True enough, there was slight pus came out from the catheter tract.

3. And with the removal of the catheter, I will be poked everyday for drug infusion. (Better still).

I feel much better today, the nausea is a bit less and I have more energy.

day +76 post transplant

2007-12-04T12:11:00.001+08:00

I wrote today's entry on day +77

day +75 post transplant

2007-12-02T23:38:00.002+08:00

Still not feeling well. I slept most of the day, yersterday and today.

day +74 post transplant

2007-12-02T23:38:00.001+08:00

day +73 post transplant

2007-11-30T15:01:00.002+08:00

Sorry I didn't make any entry last 2 days. It was just that I didn't feel quite okay...The result of kidney function yesterday didn't show any much difference from the previous one. I guess it'll take sometime to improve...The nausea late afternoon and evening continues...
My wife was posted to Klang General Hospital for her specialist position. Still trying to appeal if could get nearer hospital since I am still getting intensive follow up.

day +72 post transplant

2007-11-30T15:01:00.001+08:00

day +71 post transplant

2007-11-30T15:00:00.000+08:00

day +70 post transplant

2007-11-27T22:10:00.000+08:00

I am not really feeling well. A bit weak. May be my Hemoglobin is a bit low and I tend be breathless even after simple task like talking too long and after shower. So, I just rest a lot.....

day +69 post transplant

2007-11-26T20:00:00.000+08:00

I went to the hospital as scheduled with my wife. The blood result today showed some improvement. The kidney function got slightly better and there was no necessity to reduce the anti rejection drug. The anti viral infusion still was witheld since the cell counts were still low.

day +68 post transplant

2007-11-26T19:59:00.001+08:00

Yesterday (Sunday) :Sorry no entry since I was still relaxing

day +67 post transplant

2007-11-24T07:23:00.002+08:00

Weekend: no blogging day, relaxing day and watching relaxing TV programmes

day +66 post transplant

2007-11-24T07:23:00.001+08:00

Yes!!! It has been a cheerful day for my wife since she passed her Final Masters (Anesthesia) exam. The result came out yesterday and I shared the joy on her achivement. I was so excited when she told me so. At least the physical and psychological burden of preparing and facing the exam has gone off. I think she had enough when she had multiple times to pass the Part I previously and this time she made through with straight attempt.

day +65 post transplant

2007-11-22T10:23:00.000+08:00

I went to the hospital to recheck my blood test. All my cell count didn't changed much or further went down. Most probably because the doctor has stopped the anti viral infusion temporarily. However, I am little worried since the kidney function was not that good. In fact one of the result showed significant increment within a week. I still believed and hope it will be temporary and will improved when the doctor decided to reduce the anti rejection next week.

Anyway, my general condition hasn't changed much. I felt weaker and more nauseated especially towards the evening. I also felt more thirsty even though I have tried taking as much water.

day +64 post transplant

2007-11-22T10:17:00.000+08:00

I was relaxing at home yesterday. My wife went for her last paper/session of her final exam. Hope that she will get through. My general condition was slightly better but I still felt weak and uncomfortable with the nausea and headache especially towards the evening. For the past few days I ate less during dinner....

day +63 post transplant

2007-11-20T23:07:00.000+08:00

Nothing much to mentioned. My nausea and appetite still didn't show any improvement especially towards the evening. I tried to maintain gulping a lot of water as much as I could to clear those toxins from my body that could causing the problem...

day +62 post transplant

2007-11-19T09:22:00.000+08:00

I went to hospital today as usual. In the ward (day care now) waiting for my blood result.

My blood result: The platelet was down to a level that they have to withold the prophylactic anti viral infusion. So there will be no infusion until my count return to a better level.

While waiting my turn to get the medicine from the pharmacy, the ward staff called me that the urea and serum creatinine (body substance used to indicate renal function) has further escalated. I know it must be the Cyclosporin side effect but I hope it is transient and reversible...

I still have that funny ammonia like smell....

day +61 post transplant

2007-11-19T09:17:00.000+08:00

At certain times I felt I was a bit weaker and uncomfortable. Yesterday, I noticed again that I smelt something funny (ammonia-like smell) but it was temporarily..and when it comes, togather with the nausea and fatigue feeling made my day a bit down...

day +60 post transplant

2007-11-17T21:59:00.000+08:00

I was not really feeling well today. Actually my appetite has been a bit down for the past couple of day. The hunger was there but I always feel heart burn or somekind of bloatedness or uncomfortable over my stomach. Really difficult to describe....but it really affect my appetite.

day +59 post transplant

2007-11-17T07:55:00.000+08:00

Yesterday, I sent my wife to the university for her exam. Moral support!...Then the whole day I was just spending my time with my kids. It was the last day of school before long school holiday and my son took the chance not to attend the school. He got a few reasons not to go, no class and activity and the other thing was his friends also did not go and they all had plan! What an excuse...I should think of what program I should fix for him. Otherwise he will be at my neighbour's house all day long during this school holiday..

day +58 post transplant

2007-11-15T10:09:00.000+08:00

Yesterday, the hospital called me and informed that I need to reduced the Cyclosporin dose since the blood level is above the desired range. Hmm...they better reduce the dose or else I will be like this.....

As for today, I went to hospital as usual and getting my routine anti viral infusion. My blood count result continue to fuurther reduced but not to critical level. Hopefully it will pick up again when they started the half dose of antiviral.

day +57 post transplant

2007-11-14T14:18:00.000+08:00

I noticed that I grew fine hair on my face. Must be the Cyclosporin side effect. I hope it won't so hairy.....

*Rogaine is medicine to treat male baldness

day +56 post transplant

2007-11-14T14:10:00.000+08:00

day +55 post transplant

2007-11-12T09:54:00.000+08:00

Hospital visit again today...

My cell count was okay (see my latest blood result). There was further reduction in cell count. The doctor reduced the antiviral infusion into half.

I still try to find a time to catch my latest pics so that my overwhelming friends will overwhelm when they got to see it....

day +54 post transplant

2007-11-12T09:46:00.000+08:00

Sorry for not making any entry yesterday as I was so busy relaxing......

day +53 post transplant

2007-11-10T16:51:00.000+08:00

Nothing much to write today since I slept all day. After morning pray and breakfast, I continue to sleep until almost noon. I don't know why I am so sleepy today...The drizzle outside has made a good time to sleep again....zzzzz

day +52 post transplant

2007-11-10T07:07:00.000+08:00

Yesterday, I went for daycare visit to get my twice weekly prophylactic anti viral infusion. I drove alone since I have the confidence since last few visits. I have to be since my wife is taking her final Masters exam in a week time and I want her to concentrate on her study.

My blood results were okay.

Generally, I felt better except sometimes I do have body ache/ bone pain or something like generalized weakness. I don't know if that could be part of steroid side effects since I have been taking it for more than a month now.

Apart from that, the palpitations continues to disturb me occasionally. These are all other minor symptoms that I rarely mentioned and bothered but if everything comes at one time, I would become a bit groggy.

My face becoming more bloated and rounded. Some said I have two faces on my head and others said I look like a baby with dropped fulled cheek and the worst one person said that my face going to explode! Hahahaha......

day +51 post transplant

2007-11-08T11:12:00.000+08:00

Today is public holiday- Deepavali. So my daycare visit will be postponed to tommorrow. I just rest at home, playing internet games with my son.