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