Day +391 : Sayonara, my friend Sporanox

I am fine today.

You might wonder who this Sporanox is. It is an anti-fungal drug that I took continuously for about one and half year.

This morning, I noticed that the pharmacist did not give me Sporanox yesterday, and I am very sure that the doctor did not “off” the drug. The only drug he adjusted the steroid, which he reduced from 1 tablet(5mg) a day to 1 tablet per alternate day. In order to make sure that the prescription was correct, I called the doctor this morning. He confirmed that I no longer need to take Sporanox :-)

Previously, the Sporanox helped to wade off any potential fungus attack and now my body’s immune system has to do the job. I pray that it will do it well.

A picture of this colourful friend :-)
See you next post :-)

Day +353 : Steroid – a ‘powerful’ drug

I am fine today.

I felt very tired recently, sleepy most of the time :-( In addition to this, my appetite is no longer as good as before. I used to eat 4 slices of bread for breakfast before, but now two slices are more than enough.

The ‘veteran’ that I met on Monday told me that when he took steroid last time, he was so powerful that he only needed to sleep 3 to 4 hours per day, but after he stopped taking it, he had to sleep 18 hours per day.

Since I am taking 5mg (one tablet) of steroid per day compared to 120mg (24 tablets) before, I believe my tiredness and lack of appetite is due to the lack of this ‘powerful’ drug. No wonder, a doctor always warned his patient that those health foods or nutrition products in the market might contain steroid.

If you need power, try steroid :-) But before doing this, understands the side effects of this drug.

See you next post :-)

Day +236

My Blood Count Today:
Red Blood Count (RBC) = 130(Normal 130-180)
Platelet = 160(Normal 150-450)
White Blood Count (WBC) = 7.8(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 6.474 (Normal 1.5 - 8.0)
Potassium = 3.3 (Normal 3.5 - 5.2)
Magnesium = 0.84 (Normal 0.65 - 1.05)
ALT = 137 (Normal < 51 )
AST = 42 (Normal < 41)

I am fine today.

I went to do my follow-up this morning. The white blood count doubled compared to last follow-up reading. I forgot to ask about the reason for this surge, but given that the ANC and platelet are also increased, this reading should be fine. The liver function was recovering too :-)

Since the GVHD is now under control, doctor cut down the steroid Prednisolone to 12 tablets (60mg) per day instead of 24 tablets (60mg). On the other hand, the Ciclosporin dosage has to be doubled. You see, this is how doctor manages a post-transplant patient: never over suppresses the immune system so that it misses the chance to clear up the leukaemic cells, but at the same time, has to prevent the immune system be too strong to attack the host organs.

With this incident, doctor predicted that I have to take anti-GVHD drug for a longer period of time.

Doctor also prescribed folic acid due to decreasing count of red blood cells in my blood. In addition to this, I was given Famotidine tablets to prevent stomach related complication such as heartburn or stomach ulcer.

My next follow-up will be two weeks later in the Monday’s afternoon General clinic.

See you next post :-)

Day +232

I am fine today.

"Lucky that you come today," doctor told me yesterday. This is because this GVHD comes very fierce :-( In this kind of situation, no one is superman. I thank God that I had made a right decision by calling my friend and listened to his advice to visit the hematologist yesterday. I thought I could 'tahan' (stand) until Monday's appointment. In fact, my eldest sister also keeps pushing me to see hematologist team in UH earlier.

The BMT nurses that I described my symptoms to in Day +230 did her job very well. She made an ad-hoc arrangement with the day care unit in the ward. When I came to the ward, the necessary document was already prepared :-)

I described my situation to some of the BMT nurses, they advised me to take care of my eyes carefully; else the cornea might be 'koyak' (torn).In order to protect my eyes, I apply Vidisic Ophthalmic gel at short interval now. In addition to this, I have to rinse my mouth regularly with Biotene mouthwash. It is an alcohol-free mouthwash that contains enzymes normally found in our saliva. I searched this mouthwash in 3 pharmacies in Puchong on Day +230 but none of them were selling it. Fortunately, the pharmacy in UH had stock.

The new medication that I am taking or applying is as follow (Click to view a large one):


From left to right are steroid Prednisolone, Vidisic Ophthalmic gel and Biotene mouthwash. I have to swallow 24 Prednisolone tablets a day; 12 in the morning and the remaining at night. I joked to my wife that the tablets are Viagra :-) "How do you know?" she asked. "It is blue in colour," I answered :-)

I post photos of my mouth-throat condition and rashes for references only. If you are not ready to see the condition, please avoid clicking the link.

A photo of mouth-throat condition is available here.

A photo of rashes is available here.

See you next post :-)

Day +142

I am fine today. Continue from yesterday...

In order to prevent infection due to these enemies, I have to take the following drugs:

1. Sporanox, four pills taken twice daily, to prevent fungus infection.
2. Valtrex (Valaclovir), 3 tablets taken three times daily, to prevent virus infection.
3. Penicillin, 4 tablets taken twice daily, to prevent bacterial infection.
4. Bactrin(Co-Trimoxazole), 8 tablets taken twice weekly, to prevent bacterial infection.
5. Norvasc (Amlodipine), stopped taking, to reduce blood pressure.
6. Supradyn, multivitamin and mineral supplement

Since I am already taking oral forms of anti-bacterial, anti-virus and anti-fungus drugs, if I get infection again, I have to be admitted to hospital to be treated with intravenous drugs. That is why I have to be very careful.

The most expensive drug is Valtrex which costs RM11.30 per tablet and I believe the total cost of the drugs should be more than RM1500 per month. However, I am glad to have them free of charge.

Now I show you the real picture of the drugs that I take, from left to right on the back row: Ciclosporin, Sporanox, Valtrex, Supradyn; on the front row: Card Holder (Not drug, I don’t eat this), Penicillin and Bactrin. Click on the picture to get a larger and clearer view.

Since I consume many Supradyn, I got a lot of card holders. Let me know if you posses too many credit cards and don’t know how to keep them. I can always provide the card holders for you free of charge.

See you next post :-)

Day +141

I am fine today.

Many people asked me what medicine I am taking now. So I will give you some picture (I mean real picture tomorrow) about the medicine that I consume everyday.

The most important drug that I am taking now is called Ciclosoprin. It is used to prevent Graft Versus Host Disease (GVHD). I met some kidney transplant patients who are also using this drug to prevent rejection. I explained quite clearly (I think) the differences between GVHD and rejection on my blog Day +132.

Ciclosporin is an immunosuppressant drug widely used post-allogeneic organ transplant to reduce the activity of the patient's immune system and so the risk of organ rejection. In other words, it carries a message to the immune system, “Good boy, don’t attack them, they are friends.” This prevents the immune system to attack the organs.

However, this message might also make the immune system makes friend with real enemies such as bacterial, virus and fungus, resulting the patient getting infection easily.

To be continued and see you next post :-)

Day +54

My Blood Count Today:
Red Blood Count (RBC) = 107(Normal 130-180)
Platelet = 141(Normal 150-150)
White Blood Count (WBC) = 4.0(Normal 4 - 11)
Absolute Neutrophil Count (ANC) = 2.6 (Normal 1.5 - 8.0)
Potassium = 4.6(Normal 3.5 - 5.2)
Magnesium = 0.57(Normal 0.65 - 1.05)

I am fine today. For the fist time, the white blood count reaches normal level without the help of "growth factor". I hope the magnesium level will soon comes to normal level as well. With this, I do not need any drug infusion and thus the PICC on my arm can be removed. This PICC has been used for almost 6 months.

My body starts to grow hair now, but it seems to grow on the wrong place. Instead of growing on my "botak"(bald) head, the hair grow on my face first :-( You might think that it is perfectly alright for man to grow mustache and beard, but it is definitely more than that. The hair grows all over my face. As you know, it is quite unusual for me to have hairy face. So what cause it? The culprit is the drug Cyclosporin that I take everyday to prevent GVHD. The doctor told me even female who take the drug will grow mustache and beard and end up with a hairy face.

I met an Allogeneic Transplant friend who is more "senior" than me but only half of my age. The “seniority” here is based on transplant age. Since he did the transplant about 3 months earlier than me, he is considered to be my senior. His hair grow extraordinary thick due to Cyclosporin. When he went for a hair cut, the barber charge him extra RM2 because there are too much hair to cut :-(

Would my hairy body scared off my children? No, no. All of my children like Teddy Bear very much. Now instead of playing with all the Teddy Bears that they have, they can play with a wonderful living toy called Teddy Ba or Kingkong Ba :-)

See you next post :-)

Day +27

My Blood Count Today:
Red Blood Count (RBC) = 99(Normal 130-180)
Platelet = 57(Normal 150-50)
White Blood Count (WBC) = 1.8(Normal 4 - 11)
Potassium = 3.8(Normal 3.5 - 5.2)
Magnesium = 0.52(Normal 0.65 - 1.05)

I am well today, but again with magnesium deficiency. Both the red blood and platelet count increase quite significantly. The white blood count is no longer dropping and I believe it will start to pick up tomorrow.

I am actually dischargeable today but because my wife and daughter are having flu, I have to stay in the wad and wait. So "the space shuttle has to remain in orbit due to bad wheather".

I have been staying in this isolated VIP room for 37 (27+9+1) days. Today is day 27 after the infusion of my sister stem cell and I was admitted 9 days before the infusion, thefore we get this formula (27+9+1 = 37), where +1 represents day 0.

You might thought that staying in a isolated wad for such a long time is very boring, but frankly speaking life here is not too boring because I have a lot of thing to do everyday. One of the things that makes me so busy is "swallowing pills". I have to swallow so many pills everyday. The pills are in tablet and capsule form, with different sizes, shapes, colours and smells.

Most of the pills are round or oval in shape which are without corner. So they are easy to be swallowed - no sharp corner that will hurts the throat. Some small pills do have shape with corner such as octagon(8 sided), but because they are small, they can be swallowed too. We should never get large pills which are not round or oval in shape.

Apart from the shape, it is interesting to observe that the pills are of variety of colours- green, pink, chocolate, blue, white... Putting all the pills with different shapes and colours together will definately increase the appetite of the patient. You just imagine you are served with a dish of delicious and colourful mixed vegetable. So the patient will swallows the pills in no time:-)

Next is the smell. The multivitamin and mineral supplement called Supradyn is chocolate in colour and it smells exactly like chocolate. Since I have not eaten chocolate for a very long time, I wish I could just chew it like chocolate before swallowing it. Unfortunately I am instructed to swallow the pill in whole. So there is no way for me to enjoy eating it like chocolate:-( I think the reason of swallowing in whole is to allow the supplement to be released gradually in the stomarch to make it more effective. If we chew it into pieces then the supplement will be released all at once which is not so effective. We also refer this gradual release mechanism as "buffered". One example is "buffered vitamin C".

The Cyclosporin pill which is taken to prevent GVHD has a very interesting smell. It smells like "Petai"(Stink Bean) and coincidently it is also coloured like "Petai" which is green. We normally cook the "Petai" with "Sambal Udang"(Prawn chili paste) to make a dish called "Sambal Udang Petai"( Stink Bean with Prawn Chili Paste). It is a very delicious Malaysian food.

Everytime when I just about to eat the Cyclosporin pill, how I wish someone could bring some "Sambal Udang" to me so that I can add the Cyclosporin into it to make a dish called "Sambal Udang Cyclosporin"(Cyclosporin with Prawn Chili Paste) for me to enjoy in the wad:-) If you have no idea of how the dish would look like, see the picture below.

Day +11

My Blood Count Today:
Red Blood Count (RBC) 100 (Normal 130-180)
Platelet 26 (Normal 150-50)
White Blood Count (WBC) =0.1 (Normal 4 - 11)

I have developed sore throat since early morning today, otherwise I am well. Because of this, I have to take soft food. The white blood count remains to be 0.1 and the platelet increased from 18 to 26, the best increment after transfusion :-)

The doctor cancelled the last dose of Methotrexate that suppose to be given by today, due to the throat pain and mouth ulcers.

Every morning, the nurse will take my weight. I weighted 63.4kg this morning, a 3.4kg increment compared to when I was admitted. You would be suprised that my weight is not dropping but increasing. It is definately not due to the luxurious life in this VIP room where I have eaten too much delicious meals. It is because there are too much water left in the body - a situation which also called fluid retention. Apart from the weight comparison, the doctor will look at the fluid input-output (IO) balance. It is simply the total fluild input minus the total fluid output. If there is too much positive balance, then fluid rentention occurs. With this IO balance calculation, I have to record all the fuild intake and all the fuild that I pass out (urine volume). It might seems too tedious for you to do this, but it is perfectly alright for me to do this as I have a lot of spare time in this small room. The only problem is my "short-term memory loss" problem, where I forgot the volume of urine that I passed before I got a chance to record it down after coming out from the toilet. The third approach to judge if one has fluid rentention is to examine the body especially the face, stomarch and the limbs to see if they swell. If they swell then fluid rention occurs. Please be warned that numerous other problems might cause the above conditions, consult a medical doctor if you counter any of the symptoms above is my best advice.

I amost get all the symptoms everyday. In order to discharge the excess fuild in my body, the doctor always administers a drug called Lasix (Furosemide) through injection, luckily not through a needle poking into my body, but through one of the catherters. Then the next one hour or more, I will be busy going to toilet and doing recording.

If you went to a clinic and the doctor decided he needs to administer this drug to you, never insist that you need an injection instead of taking an oral form of the drug. While many peope are afraid of injection, one of my friends will always force doctor to give him injection. I believe he has not so much confident on oral medicine or he is a hot tempered guy who want instant result. If you get an Lasix injection and try to drive home immediately, you would most likely to have a "game-over" in your car as the injection works incredibly fast, normally within 10 to 15 minutes.

That's all for today and see you next post :-)