latest follow up

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

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

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.

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

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

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

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

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

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

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.