after 3 months+ post transplant

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

day +84 post transplant

day +83 post transplant

day +82 post transplant

day +81 post transplant

day +80 post transplant

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

day +78 post transplant

day +77 post transplant

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

I wrote today's entry on day +77

day +75 post transplant

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

day +74 post transplant

day +73 post transplant

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

day +71 post transplant

day +70 post transplant

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

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

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

day +67 post transplant

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

day +66 post transplant

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

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

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

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

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

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

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

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

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

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

day +55 post transplant

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

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

day +53 post transplant

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

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

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.

day +50 post transplant

HAPPY DEEPAVALI TO ALL MY HINDU'S FRIENDS AND READERS

day +49 post transplant

No entry today since I am not feeling well....

day +48 post transplant

Everything went as usual. I went to the hospital this morning and the blood results came back with significant reduction in the white cell count but still within the normal value. The platelet continued to show some increament.

A few people I met today pretended could not recognized me since my facies became so different. Even my neighbours initially did so because they never saw me bald, with glass, darker and chubby......

I think my hair started to grow.....could be those hair follicles is surviving again....

day +47 post transplant

One thing that I noticed and worried lately is that my appetite is really 'enhanced'. I know this could be due to the steroid that I am taking and I knew it is a good sign that I am recovering well. Even in early morning, when I got up, one of the first thing that come in my mind is always 'what is there in the kitchen that I can munch before I start the day?'

Then the next thing that I fear most what would happen to my weight that keep increasing? I hope it is a temporary effect, at least from my reading and from other few patients experience. I am not so bothered about the overweight but it has raised some 'associated problem' like less trousers that I could wear and the feeling lacking of energy.....hhhhmmmm. I started to think what schedule of exercise should I stick to when the time allowed me to do so.

day +46 post transplant

I went for a brisk walking early morning, with improvement. I mean, I managed to walk a bigger round....yes, I walked the whole round of my residential area. Okay, its not bad. But still, I cautiously not to exert myself too much....so much so not to increase my body "global warming"....

The whole day followed by 'body building' activity. Eat and rest.....Hmmm...I think I should start doing something more creative....next week.

day +45 post transplant

Another resting day.....body and minds...and slept well.

....zzzzzzzz

day +44 post transplant

Outing day.....yeah!!! but to hospital. Today the blood result was okay. My blood pressure was okay too without antihypertensive. I have another antibiotic to add to my list starting from today. But it is going to be taken twice a week. It is to cover me from pneumocystic (protozoan type of germ) lung infection. My weight has been playing around 80-81kg. Another good thing about steroid is that it has really increased my appetite and being at home and NOT doing a lot of other things, 'risk' myself of engaging to eating activities. So in order to turn the habit into a healthy activity, I will always make sure that I have enough fruits stock as my healthy snacks......

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...