day +43 post transplant

No exercise today....Had breakfast and then rest all day......

day +42 post transplant

Early morning, I went for exercise but this time I tried to intensify by doing light jog. Huh....it was not that easy......Anyway...I felt relieved after a managed to shed some sweat.

Afternoon?......I went KO and rest.....

day +41 post transplant

Another check up and anti viral infusion today. My blood results were okay so far. There were reduction of cell count to some extent as expected especially the white cell and hemoglobin but the platelet continue to grow further. My blood pressure is more controlled and I don't have to take anti hypertensive anymore, and observe for a week. The prednisolone (steroid) was further tapered down to 40mg daily. The steroid caused me to developed body acne over my chest and back and my face has turned into a moon shape. I hope everything will be back to normal when I stop taking the steroid completely.

My hair....? No signs of growth yet....may be in another couple of month.

day +40 post transplant

Resting day.................(sleeping day?)

day +39 post transplant

my birthday card

27 OCTOBER HAPPY BIRTHDAY TO ME!!!

x37
Today is my birthday. Alhamdulillah...

And today also, MAX FAMILY, our beloved CML local support group is holding another patients and caregivers gathering in Hospital Ampang in conjunction with Hari Raya and Max's* birthday celebrations. I wish I could be there but since I am not advised to be in a big crowd, I just sent my video message to replace my presence. I would like to congrats and say my thanks to MAX FAMILY team for being so enthusiastic and passionate in holding any event and I hope this will continue in the future. I was so amazed with the group. The response from the patients and their caregivers always make me feel that they really appreciate any gathering and that they are expecting more and more....

Good luck MAX FAMILY!!!

*Max was a CML patient and his journey to fight his illness has been long inspired by CML patients around the world. His birthdate is on 19th October and being annually celebrate by MaxFoundation and CML support group.

Late nite, I got another surprise.....my friends in Max Family sent me this...

....and a few pictures from this morning event. I am so proud with them....

day +38 post transplant

Everyday that comes seems a better day for me. My Praise to God. I went for light walk this morning and appreciate the morning coldness just before sunrise. I went back before the sun is rising high. Always see a group of elderly women doing tai chi. Wish could join them. Hehe...

day +37 post transplant

I drove to hospital alone today for my routine biweekly check up. The blood counts done today were normal and as scheduled, I was given the prophylactic anti virus infusion. It only lasted for about an hour. By noon, I was done and I was ready to go home . Not much immediate side effect. At least I reached home safe. It is known that the anti virus will cause my blood count to reduce to certain extent but usually does not need any supportive transfusion...

day +36 post transplant

Hmmm..... No exercise since it was raining early morning today. I just spend my time at home trying to keep up with all my household files updating and doing some house tidy up. I just can't make myself not doing anything. At least I get myself sweat.......

day +35 post transplant

Hmmm... I went for a brisk walking and light exercise early this morning. First time ever, I went out from my house walking in open environment, since I was home 2 weeks ago. Of course I covered myself with mask. Not bad, I spend about 20min to 30min, even though I was easily stopped to catch some air..

day +34 post transplant

I went for my biweekly follow up today. Alhamdulillah, all my blood result continue to improve. Only the platelet, as expected is a bit slow.

I will be started on intravenous anti virus infusion (Gancyclovir) next Thursday and it is going to be twice a week. My blood count may started to reduce again. A side effect from the anti virus infusion.

I will take less prednisolone (steroid) gradually starting from tommorrow since there is no sign of further GVHD progression. Hmm.. hopefully, my blood pressure will be more controlled (the pressure has been swinging again since prednisolone was started) and my face will not bloated further more (moon face like).

day +33 post transplant

Normal business. Just rest at home. Read newspaper and watched TV. I wish I could continue drawing but drawing needs concentration which I still feel lacking now.....May be later. I still have a lot of time. More over, I used to have fine tremors from Cyclosporin that I am taking right now...

day +32 post transplant

To 'commemorate' my one month old 'new life', I would like to remind myself on certain issues:

1. FOOD: One of the biggest challange in taking care what I am taking everyday, I should avoid from taking HOT AND SPICY foods (as you know most Malaysian way of cooking are indispensible of chilli and spices). Haa.....no kick la!!

( I guess 'ORIGINAL RECIPE KFC' should be okay?)
I cannot simply go dine out especially fast food, ordering from any common by the road side stall or eating buffet kind of food. (Argh...forget the above). As far as possible, I should get freshly cooked food as this will significantly reduced the bacterial contamination. Don't take salad or ulam ( a lot to be missed!..). Don't take undated product tit bits, cannot take my favourite peanuts, Nasi Lemak without 'sambal' ( just imagine), no Roti Canai ( I guess home made can but eat plain one..hehehe)...bla...bla and many more...

NO THANK YOU!

2. OUTING: Whenever I am out, I should be well covered from head to toe, long sleeve, trouser, cap@ head cover, face mask and sun block. This is to reduce probability of getting skin GVHD that may be triggered from direct sun exposure. Its kind of wierdo for the first time, but I have used to it now.....especially when people around started to stare at me.

BUT THIS IS EXTREME! NOT ME

3. PERSONAL HYGIENE: Every normal routine should be done extra 'clean' @ aseptic from brushing my teeth, regularly rinse my mouth with special antimicrobial mouth wash, shower with antimicrobial shower cream, antiseptic hand wash. Always put on moisturizer lotion the whole body and don't scratch. Take care well my Hickman's line and dress the ports with gauze. (I usually spend 30 minutes to 45 minutes to get all done).

4. SOCIAL CONTACT: I should limit my visitors/ disallowed them if they are having fever, cough or runny nose.

*The above should be maintained for at least 3 to 6 months. Hopefully it will end sooner. Sigh...

day +31 post transplant

Today, I just rest at home. Nothing much happened. Managed to spend time with my son, preparing for exam.

day +30 post transplant

I went to hospital today for check up. My blood count continue to improve.
Total white cell count: 8.7 (from 5.14 2 days ago)
Hemoglobin: 15.3 (from 14.4)
Platelet: 45000 (from 32000)

I hope everything is on the right track. My skin GVHD is not progressing further, and I don't have nausea and diarrhea to suspect gut GVHD.

Next week I will be getting intravenous prophylactic anti viral infusion 2 times a week. So, more frequent visit to hospital.......my only outings!

*GVHD: Graft Versus Host Disease means the donor cell (graft) attacking my own cell (host) usually skin, liver and gut)

day twentynine- post transplant

My wife has started working today. Nothing much happened today and I just spend my time with my kids at home, especially my son whom I have to prepare him for his exam next week. I managed to controlled him while I am around and hope that I would be able to discipline him on doing his daily routines. Otherwise he will be staring on TV all days and forget other things.

Tomorrow, another check up on blood test. So far, I have to attend the check up twice a week to monitor the blood count progress...

Generally, I felt much better. Obviously, the energy and enthusiasm is not like before the transplant. I started to miss all those works, outings and the usual meetings I had before the transplant. I can't wait to be in those days again....

When I started reading more on post transplant survivors, there are so many steps and outcomes ahead that awaiting. But taking one person say.....take things ONE AT A TIME... and don't ever think the worst can happened. Just, strengthen the mind and body and you will be free...

day twentyeight- post transplant

I went for my follow up today. My wife drove me to the hospital since she is still on leave. Thank God, my blood result was fine. My white cell count has steadily crawling up to 5.14 and the Hemoglobin has drastically went up to 14.1. Only the platelet that always revolved around 32000. The rest of the investigations were quite okay. My liver enzymes was a bit high and my fasting was normal.

While waiting for the blood results to return, I had a chance to meet with another two post transplant patients. We talked and exchanged experience as if we knew each other long before (that is the miracle when you almost share a same destiny). I gained a lot from them since they had their transplant earlier and they even had gone through more complicated journey than what I had. Deep in my heart, whatever bad experience that I ve been through, there is always another people telling their plights and ordeals that make me feel I should be more thankful and honour life......

day twentyseven- post transplant

My kids were home. I heard from my mum that they were very excited during the stay at my 'kampung'. My younger brother who donated his stem cell also came down to visit me and I took the chance to really say my appreciation to him during the forgiving time. He brought along my father who has always been calling me to know my progress. (He didn't get a lot of chance to meet me).

My brother and father went back late afternoon.

Since I was discharged home, besides the hiccups and indigestion (that almost resolved now), my sleep is always disturbed by frequent wake up to pass urine and to get back to sleep has almost taken my time to the next urge (almost every hour). Hopefully, I am not developing diabetes and it could be from the steroid that I am taking.

day twentysix- post transplant

Today is the second day of Raya. It is all left me with my wife since my kids followed my mum and rest of my family went back to my home town (where I was born) yesterday to celebrate Hari Raya moment. At least I gave them to enjoy (since I noticed my son kept complaining that he was bored since we were not going anywhere due to my 'confinement' and restriction- for at least for 3 months). I could see how joyous they were in the car with their cousins before they went off.

Anyway, they will be back soon today...

I just watch the TV today just to kill the time since there were a lot of programmes on TV. Generally, I feel okay today and my appetite continue to get better and better (even though I just cautious and refrained myself not to take any food- especially the leftovers Raya foods that keep staring at me !)..

day twentyfive- post transplant

WISHING SELAMAT HARI RAYA TO ALL MY FAMILY AND FRIENDS, MY BLOG READERS AND WHOEVER HAS SUPPORTED ME TO GO THROUGH THE JOURNEY OF MY TRANSPLANT AND NEVER FAILED TO CONTINOUSLY PRAY FOR ME.

THANK YOU!!!

My family (mum and siblings) came over to my house around afternoon (they all made the Hari Raya preparation and cooking at my sister's house as not to exposed my self to a lot of people). We get to gather and forgive each other and especially I would really thanks my mum and brother/ sister for being so caring for me and taking care of my kids while I was warded. They all left to my 'kampung' i.e home town not long after that to celebrate Raya there and they brought along my kids.

day twentyfour- post transplant

The days went by quite well for me. I managed to rest at home and spend my time with my kids on the eve of Raya Celebration. The joy to celebrate Raya may not as great for me (since i missed the fasting month) but in my presence, at least my wife and kids will be more happy.

Anyway, the preparation went on and hopefully this Raya will bring more happiness and strengthened my family.

day twentythree-post transplant

Yeah....no more hiccups and I can go home today!!!!!. The doctors came just now and just as they knew that I really wanted to go home today....I said YES when they offered me so.

My rashes has not gone further. Anyway, I will be on prednisolone intensively for 2 weeks before started tapering the dose the subsequent weeks for another 4 to 6 weeks depending on the progress. Cushingoid...yes. Most patient will have. (Cushingoid i.e changes of facial figure after taking setoroid like moon face, chubby, big nose, muscle wasting, weigth gain etc...but don't worry it will only be temporary and reversible once the drug been drawn off.)

So, I can be with my family again...especially my kids during Raya celebration. I noticed they all were a bit 'wild' and disobedient when I was not around. May be, thay all missed me so much...

WELCOME DADDY!

day twentytwo-post transplant

My general condition gets better this morning. The iv drip will be reduced to 2 pints over 24 hour. Tommorrow, the methylprednisolone will be converted to oral prednisolone and if it depends on my body weight, I am going to take 75mg/day i.e 15 tablets a day. Wow... another set of drug menu.

My blood count results were getting better. Total white cell has raised to 6.07.

I m still having a continous hiccups since yesterday. I just stop temporarily last night before it started again this afternoon. It became so annoying ang tiring when it was non stop. I ve tried most remedies and maneauvers even the pills but it was only for a while...

day twentyone-post transplant

I got up fresh this morning eventhough I didn t sleep well last night. I took sleeping pill and KO around 2am.

Everything seems to improve this morning. I have more energy. The GVHD has not progressed further. My cell count improved. The hemoglobin raised to 8.06 but still need top up today. Platelet has gone up to 24000 from only 10000 yesterday and white cell count stated to crawl up again to 4.25 from 2.34 yesterday.

I may be able to go home one day before Hari Raya celebration........

day twenty-post transplant

The team came inthe morning and found out evidence of grade 2 GVHD of skin (Graft versus Host Disease) - i.e. a condition where the donor stem cell (graft) start attacking my own cell (host). Usual organ involved are skin, gut mucosa and liver and depending on the severity it will be graded from 1 to 4. In a way, mild GVHD is desired as it can eradicate residual CML cell.
Anyway the doctor has started me on IV Methylprednisolone (steroid) to control the GVHD.
By the way my last night result was a bit suprising but it may explained why I was not really ok yesterday.
Hb: 6.7
Platelet: 10000
Total White: 2.34

I will be transfused with packed cell and platelet today. Hopefully the blood bank have enough for me ( I heard from News that they were really short of blood and moreover, I am now blood group A+ (conversion from my donor blood group; I used to be O+). Anyway, hope for the best.....

day nineteen-post transplant

Sorry for the late entry. Actually I was not really well toward evening of day nineteen. I had a generalized bodyache and i felt no energy. My appetite was bad and I could take not even half of my food. I started feel feverish and the temperature initially was 37.0 before it climbed to 37.4 and 37.6 at night. I also started felt chills and rigors. With the reminder of rising temperature, my wife call the ward and they advised to come over. We reached the hospital at about 1130pm. All the neccesary investigations were taken before I was started on intravenous antibiotic again. I took the chance to have a good rest even the next morning......

day eighteen-post transplant

Yes, I am home. So glad. Me and my wife finally packed up almost midnite when the platelet transfusion finished around 10pm. Even though the waiting for the transfusion to end was really hard, I feel sad when I started to walk out from the ward that nite. I could feel that it was like a few days ago that I was admitted and now I was leaving my room that full of memories.

We reached home half an hour before midnite and my kids were already slept. My daughter woke up awhile as she was really excited that I was home. Hemmm....To be at home is far much better...so much better that it could boost my recovery.

So far, I am good. I just feel easily tired whenever I am doing my usual routine like taking my bath, 'solat' and even walk around the hall. I guess it could be from my low hemoglobin (red blood cell- cells that carry oxygen).

I just need to inform everyone that I would be more grateful if I have no visitors at the moment since my immune is still low and and vulnerable. I could feel that my friend all are excited to pay a visit from the continous support that they are giving. Thanks a lot. I really hope we can meet up any time sooner when the condition allowed.

Starting from next week, I will be attending the followup as frequent as twice a week depending on my progress.

day seventeen-post transplant

AM:

Praise to God. I was allowed to go home today. Finally, I will be released from 'jail' with doctor's 'bail'. There were a lot of precaution that I have to remember in regards to alarming symptoms, foods, contacts with family and visitors, mask wearing, exercise and recreation and etc. These precaution should always be taken care of as long as my immune system is still low ( could be as long as 6 months) .

Anyway, I have to be transfused with platelet first since today's result was low. My total white cell count has improved a bit to 1.99 (yesterday was 1.54).
I was given a Pentamidine nebulizer ( anti pneumocystic - i.e. opportunistic lung infection that usually easily contracted by immunesuppressed patient). The smell and taste...yeak!!! another horrible experience ( I wonder why the pharmaceutical company didn't put strawberry flavour into the mixture). I breathed through the nebulizer almost an hour until my nose was really stuffed and blocked.

PM:

Hemm... I am not discharged yet since the platelet hasn't arrived from the blood bank. My son must be disappointed now since I told him I ll be back in the afternoon. I wish everything will be ready before late night so I can still catch the time to go home...can't wait to be at home

day sixteen-post transplant

AM:

Since last night, I was not attached to any intravenous drip/ Mr Pumpman anymore. Huh...what a freedom. Going to toilet and doing anything seems much much easier and natural. I felt more comfortable doing my ritual and not getting effortless anymore pushing the pump machine here and there. Now, only the Hickmans catheter is hanging and swinging on my chest...for the next 3 months!.

I was supposed to be allowed to walk outside of my isolation room yesterday but since the platelet transfusion ended quite late, I didn't had a chance to do so. Maybe today.

My white cell count yesterday was 2.0 and platelet was 19000. Hopefully I can go back this weekend as being planned.

day fiftteen-post transplant

AM:
I feel much better this morning. Hopefully it will continues the whole day. The team just came in and they will stop the intravenous drip today, with a deal that I will drink a lot. The plan now is that I will be discharged soon, maybe Friday. Today, I will be allowed to walk out from my isolation room. Yeah!!

day fourteen-post transplant

The team came in today. The consultant reassured me that the nausea associated with Cyclosporin will slowly goes off as days goes by. My taste may improved in about 6 weeks.

The whole day, my general condition was slightly better. I started to get use to the trick of taking the Cyclosporin. Anyway, the subsequent feeling from the drug left me a bit slow. The whole feeling were nausea, palpitation and indigestion. I hope all the symptom will be lessen as days goes by.

day thirteen-post transplant

Feeling much better?...emmmm yes I would say. Except that my appetite is still not improving, the rest of my previous problems seems to be resolving.

Today, the anti rejection drug was changed to oral (capsule) form. Wow.. I never see such BIG capsule. The taste...they repeatedly told me that its not going to be a good one...the patient will always taste metallic everytime taking the drug. Some patients said it smell like 'petai' hehehe! Whatever... I don't want to really figure it out, so...I took some sweet fruit first...then gulp the capsule (which was not that easy because of it gigantic size) with large amount of water....then continue to finish the rest portion of the fruits.

Initially, everything went well. Bit towards mid morning I started to feel dizzy and nauseated. It could be from the Cyclosporin that I took this morning. From then on, I didn't have the feeling to eat, even taking plain water. Everything felt and tasted funny. In the end I just rest and trying not to move a lot. Things got better toward evening, I could take my dinner even not more than half portion. But as like this morning, after I took the Cyclosporin, everything came back again. So..I went to sleep early la..