Leukaemia: A very costly disease and needs a very long treatment phases (Personal Experience)

Part I (Draft)


Background
In the second week of Ramadhan 2006, my youngest daughter seems different, not so active, easily tired and quite often had a high fever. My wife did not bring her to hospital or clinic because she assumed that Gina will be fine by taking Paracetamol. Indeed, she was getting better after taking drug but the fever just relapses for one or two days. My wife called me to inform this situation for a number of times. At that time, I was in Jakarta attending AusAID scholarship predeparture program.

One week before Eid Mubarak, I also did not put a special attention to Gina’s health situation. I though it was only common child problems, easily get fever if they do not have good appetite to eat. One thing makes me curious is her pale-faced and hand. If we observed her face and hand closely, it was easily can be concluded that Gina was not in a good health condition. Almost all of our relatives who we visited in Eid Mubarak days were also give a similar comment on her condition.

Another evident, she was sleeping on the way to her school in the morning. In the school, she was not so active and spent a lot of her time in the bed. This was uncommon behaviour of her. It was quite often we made a comment and a joke that she was malnutrition due to lack of intake of food. Of course, she got upset and could not accept our joke. We did this just to motive her to eat more. However, our effort was useless
Then, this makes us more confident that Gina is sick.

On the first day of November, my wife did not go to her office, Indra Puri Community Health Centre, about 30 km from our housing complex, Villa Buana Gardenia. I also did not have any activities in that day. I have a plenty time every time since I retuned from London. Then we decided to see a doctor. We went to dr Buchary, a senior doctor who does practice in the morning. After waiting for more than two hours we can see him. After he examined for about 3 minutes, not surprisingly, she advised us to check her blood to Prodia, the most popular laboratory centre in Banda Aceh, in fact the Lab is available in almost all cities in Indonesia.

The Lab results was ready to collect at 5 pm. One of Prodia’s staff reminded me not to open at that time. She asked me to give the report to doctor, in this case, was dr Buchary who refer us to Prodia. I could not understand the reason of him. However, I was lucky not to obey of her order. I opened it directly in front of her. The result makes us shock, particularly the figure of haemoglobin, only 4.4 g/dl. It was far below the normal range, accounting for 11.5-13.5 g/dl. Similarly the figure of Trombosite or Platelete, only 35 thousand while the standard was about 150-450 thousand. Eritrosite or red cell was 1.75 million/ul. White cell (Leukosit) was 4.37 thousand. Haematocrit was 14.1%. In contrast, “Laju Endapan Darah” was very high, 140 mm/hours. In normal person, the maximum number was 20 mm/hour. Lymphocytes and monosytes were 88.6% and 7.3% respectively, higher than normal range (25-40% and 2-8% respectively) while other types of white cells are lower than standar figure. It is very difficult to make any tentative conclusion based on this figure. In order to know exactly what was going on with this result. We decided to go to Paediatrician straight away on that evening.

Then, we discussed which doctor is the best to visit. We know some popular Paediatrician in Banda Aceh, such as dr Sidki and dr Nurjanah. The problems with these doctors are too many patients. Consequently, we shall not have a good explanation of blood test result. In addition, we should queue up until 10 pm. Some times it is not good idea to visit the most popular doctors. Then we decided to find out other paediatrician. We went around city and then we saw a Paediatrician, Sulaiman Yusuf, who does practice just besides of Jambo Tape Metropolitan Police.

We came and follow usual procedure. As a new patient, we registered ourselves by providing name, address, and age, and then we paid for Rp 2000 in order to get a small card, similar size as name card. The staff of the clinic wrote down our queue number, which were 22. This mean, we should wait until 9 pm. When our number was called, then we came and showed him the blood test result. He read thoroughly a four-page report and examined the Gina’s body. Surprisingly, doctor Sulaiman does not trust with Prodia report mainly because the tests are conducted only by Analyst who just three years training after graduating from senior high school. He ordered us to do another test in Mina Clinic Laboratory. Based on Prodia report, he could not make any conclusions related Gina’s health problem. However, he suspected that Gina got Malaria or Dengue. In addition, he recommended us to do blood morphology test at Mina Clinic. According to him, Mina is more professional than Prodia. I did not want to argue with him. I just obeyed his command and I hoped the blood morphology test results will be used and useful to make a right diagnosis. I got the result at 10pm at the same day.

One good thing about the report of Mina Clinic was indicated negative for Malaria. The similar result as indicated by Prodia report. Then, Gina might be has a Dengue. However, there was no any red sign in her body as simple and common symptoms of Dengue. We went home at that time with a very big question in our mind. Moreover, the physical condition of Gina is getting worse with a very high fever. At this point of time, we were quite sure that Gina was sick and need the medical treatment.

In the morning following day, we went to dr Buchari practice place to inform the blood test result. We came very early to his place, about 8.30 am. There were no many patients at that time and we confined that we shall meet him soon. Then, we met the card person to report our intension to see doctor. Surprisingly, there were 21 other persons already registered for queue. It really made me surprised and then I asked the person in charge how can this situation happened. The answer, indeed, was very simple. He said that other people had registered since last night and I just come in the morning. After waiting for a while, with great expectation that dr Buchari will come a little bit earlier and no other patients waiting for him so that we can meet him earlier, then we decided to go away.

I though it was not good idea to wait until 5pm to meet dr Sulaiman. Then I tried to call his mobile phone. Unfortunately, he did want to accept my calling and hang up the phone soon after I introduced myself as a patient. Actually, I called him only to report the Mina Lab test result. I expected that he can say some things about the result. Unfortunately, it seems that it was uncommon the patients talk with him through telephone. Forget him, find other solution. Then we decided to go the hospital directly if the hospital has a paediatrician.

I passed the Fakinah Hospital and I dropped my wife asking whether Fakinah Hospital has a Paediatrician or not. No more that 5 minutes, my wife informed me that the Hospital has a Paediatrician. Then we decided to get treatment in that hospital.

UGD
Like other patients who go to hospitals, patients already in bad situation, so do Ghina’s case. She was admited to UGD. Dr Fuadi, general doctor in charge in UGD at that day handle Ghina. I informed him that Ghina haemoglobin was 4.4. After he examined the body of Ghina, he was very sure that Ghina had Dengue and he asked me to looking for a room for further treatment. Surprisingly, the room was full occupied and we should waiting for a while in UGD’s room. Another surprising, dr Sulaiman visited her after I send a SMS to him. He also suspected that Gina had the Dengue. Finally, we got a room, Duyung room, with the price of Rp. 150.000 or about RM 50 per night.

Dengue and treatments
Ghina was diagnosed as Dengue even if they were not so sure. In the first day of treatment in Fakinah on the second day of November 2006, another blood test was performed. The result was similar to Prodia test result. Haemaglobin was 4.6 gram/dl. Red cell was 1.81 thousand. Platelets were 33 thousand. Other figures were also quite similar to the previous test. After blood infusion and treatment, blood test was conducted again. The main purpose was to monitor changing the composition of blood cell. Except, white cell that slightly dropped, haemoglobin increased from 4.6 to 7.4, Eritrocytes rose from 1.81 to 2.05, platelets also went up to 46 thousand. On the same day, test was done again but the test was only focus on haemoglobin. The result was getting better to figure of 8.5. In the following day, the 4th of November, haemoglobin reached the figure of 9 gram/dl. However, then it dropped again to 8.0 by the 5th of November. In this day, dr. Sulaiman was replaced by dr Syarifuddin because he went out of town. To make sure, Gina had Dengue, dr. Syarifuddin recommended to do IgG and IgM test. Surprisingly, the result indicated Dengue. IgG and IgM positive. However, he was also not so sure with this result because it seems other figures did not support this conclusion. Finally he advice me to refer to Hospital in Medan where there are haematologies/oncologiest. In the evening, dr Sulaiman also visited Ghina for the last time, was also recommended us to bring her to Medan or to Jakarta to under go Bone Marrow Test.

After five night treatment in Fakinah without any concrete conclusion, then we decided to check out the hospital. The total cost of treatment was about Rp. 1.800.000 but I just paid about Rp 1.300.000. Some Rp. 500.000 was covered by Askes insurance. This is the first time for us using the Askes benefit. Ghina insurance card was just issued in that morning. Luckily, the process only took time about 20 minutes. A former student who works there helped me to speed up the process.

Depart to Penang
About 9 o’clock in the morning, the hospital bills were paid and then we went to Iskandar Muda air port straigh away. In the air port we should wait for about three hours due to delay of the plane, Lion Air. Fortunetely, even if the plane was delayed about one and half hour, we still able to get the connection plane. They were waiting for connecting passenger from Banda Aceh. We were the last passengers to go on board due to a problem with my passport. In the passport, my address is still in London, 44 Nansen Village Woodside Avenue. Therefore, the immigration officer asked me to fill in the form of fiscal free. Unfortunetely, it took time about 20 minutes. On the board, my seat was changed to other passenger and then it also five minutes to find other seats for my family. Of course, I complained for this mismanagement.

Arrive in Penang
We arrived in Penang air port at about three afternoon and then waiting for Zaki, an apartment agent, an Acehnese who already stay in Penang for a long time, to pick us up for another one hour. Luckily, he lent us RM 50 or about Rp 75,000 to buy some goods. At 4.30 pm we entered the Mewah Court. Our room was in the third floor with the price was RM 50 per night. The room was fully equipped air condition and bathroom inside. However, the Aircon did not work because of unconnected electricity to the aircond device.

Admission and Registration to Lam Wah Ee Penang Hospital
I was wake up so early. I have completed my morning pray about five minutes when morning call or Azan was deliberated. About 6 o’clock in the morning, I already in registration desk. No body in queue line yet, except in another line for readmission patients. After waiting for one hour, the desk was opened and took about two minutes to provide all data they needed, only name, an address, id number (passport for Indonesian patients) and contact number. The officer informed me the room number, 38 to see a doctor and I should be in front of the room at 10 am. Then I went back to apartment and got some break fast.

Waiting for Consultation
Ten minutes before ten o’clock, I had been there. The room that we were waiting for is heamatology-oncology, which is what we were looking for, unfortunetely, can not provide a consultancy for children. Then, they referred us to another room, to a paediatrician. I set in front of the room and had a chat with several patients who also waiting for a doctor. Thirty minutes had passed but the doctor did not show up. The doctors’ behaviour which is never be on time also happened in the country, I grumbled. Suddely, a nurse called the patients came in the room. I though the doctor was inside. In fact not, the nurse did some innitiative to weight patients’ body and tall. Soon later, the doctor Adele entered the room and the nurse called name of patients.

Then, the nurse called my daughter’s name, Ghina Nasywa. I entered the room straight away. Befor she did any examination to Ghina, I provided the blood test report that I did in Banda Aceh. She made some notes and then the report returned back to me. At least, the report can provide her some backgrounds about Ghina health condition. She also asked a number of questions related. The consultation took about ten minutes and then she referred us to admission desks.

Admission Desks
The nurse took us to the desks and we should waiting for a while before I met the admission desk officer. She asked my passport as the next skin of Yumna and offered me the option of rooms. There was a variation in the price. The prices of rooms were RM 25, 75, and 140. The differences were only in the number of patients. RM 140 was private room and the family can stay in. Other rooms were not allowed for the family to be in a room after visiting time, particularly for males. For RM 75, there are six patients per room while for RM 25, eight persons. At that time, the the cheapest room was full occupied. I have no choice except the room of RM 75, plus RM 5 for lodger, the female next skin of patients who stayed in the hospital. Then, the officer showed me the table of deposit. She asked me about RM 2,000. I asked to pay in USD but she could not accept it. Fortunetely, she gave me the time to pay deposit and brought my daugther to the room first. She gave me a one litres water cup with towel, healthy flatype body thermometer, a tooth brush and a small bag that suitable to put a mobil phone, etc and called a porter to bring us the room in the second floor, children and maternity floor. After every thing was settle then I went to Komtar with Zaki to change Rp into RM. I got RM 3,800 for Rp 9,500,000.

Another First Blood Test in Penang
In the sixt room patient, only four beds were occupied. Two patients were from Indonesia (Ghina and another Chinese girl from Medan) and other two were from Penang. The child from Medan had a problem with her head, over liquid production in her head. Alternatively, she should be implanted a manual device to prevent flood in the brain.

While I was observed the room and the culture of Lam Wah Ee hospital, a nurse came to get some blood sample of Ghina. Doctor would like to confirm the previous results and to know whether Ghina had the Dengue as was diagnosed or Leukaemia. In the evening, Ghina condition was getting worse. She had high fever and the bleeding in some parts of her body. Bleeding and red spots given us little bit happy since we expected Ghina was better had Dengue than Leukaemia. To confirm my feeling, I asked for blood test result. Unfortunetely, the nurse did not want to give it directly to me and asked me to wait the doctor. The nurse added that the doctor will explain to me soon. I am waiting until 8pm but the doctor did not show up.

Dengue is Negative
In the following day, the 8th of November, the doctor Adele asked me to meet her to discuss the blood test result. The first things she showed me was Malaria indicator test, which was IgG and IgM. The result was opposite the previous test that conducted in Fakinah Hospital. Fakinah lab indicated positive dengue but here negative. This result made me sad and it was high likely Ghina will suffer from Leukaemia. Indeed, dr Adele confey a very high chance Leukaemia. However, the best test to diagnose her was through Bone Marrow test and then she asked me to sign the inform concern form. She needs my agreement for the operation, even if a small operation in her opinion.

Bone Marrow Tests
In addition, she also informed me that it was necessary to do cytogenetic test to know the cromosom of blood cell and then know pricesly what treatments will be delivered. The test is very expensive, about RM 1,500 to RM 2,000. No hospital in Penang can do that test. The sample will send to Singapore hospital. If I did not give her an authorization to do that test, she had an objection to do Bone Marrow test. Even if, I feel the test is very expensive, I said please go ahead.

I said it was not a small operation, since they used a lot of people although some of them were only observer or students and only took a very small part in the operation. Ghina could not accept a lot of people serounding her and asked me what they want to do to her. She has already traumatic with some nurses, especially who quite often taking blood of her. She asked me to went out the the room and then follow by my wife to exit the treatment room.

I was very sad and my tear drop unconciously while we were waiting the operation. The operation took a long time and Ghina was crying while operation. I asked myself, why it took time and Ghina cry for a long time if it was only a small operation as doctor confined me. Later I know that the first operation was not success. They could not find the marrow substance, and then they did the second time. Not surprisingly it took time. Another question was why they did not use general or local anaesthetic. That such operation will give a long term impact for Ghina treatment. It will increase the degree of traumatic for her. I was dispointed with this operation.

The rooms and the price
After operation, Ghina was returned to the room and not long time after that, surprisingly the nurse informed us to move to another room, the cheapest room, RM 25 per night. No more than three minutes, we had been in another room. The room of RM 25 was quite similar to room of RM 75, except number of patients and bathroom only one. Other facilities were similar. The room was also clean and confortable. Bedsheet was replaced daily by cheeful nurses and they do it very quictly in the team four of them. In general, I was very proud with the hospital, the attitude of nurse and cleaner services. Hot water and hot chocholate plus some cakes were also provided regularly. This made me astonished. This service was provided to all types of rooms. For me, another interesting thing for me was free hot spot internet connection. I can access a lot of Leukaemia information, sending the email to friend informing them my cases and asking some treatment information, experiences and advice.

In the afternoon, dokter Adele visited Ghina and examined her condition. She informed me cytogentics test could not be performed due to lack of marrow substance and bone marrow result will take time to do it. She said we should we until Monday. I cauld not wait and I asked why it took time. Her argument that there were no marrow substances and the bone need some further process and technique before it can be analysed.

Positive Leukaemia
However, later, by Friday, the bone marrow test was ready and the result indicated that Ghina positive had Leukaemia, Acute Lymphoblastic Leukaemia FAB L1. Then, she recommended me to get a treatment in Gleneagles soon. Lam Wah Ee does not provide such treatment. If possible we should move tomorrow morning. Then, dr Adele contacted Dr Leong and had a short conversation with him. Unfortunetely, there was no isolation room available tommorow morning and I should wait until Sunday. I also asked how much money for the induction phase treatment at Gleanigles. According to Dr Leong, it will be about RM 20,000 she replied firmly. It is very expensive. Do you have any idea where is the other places that can treat such type of disease? Negeri or Kerajaan Hospital is another alternative, but she said that if I were you, I will go to Gleniegles to get better treatment. She added that dr Leong has experience with such disease and Ghina will be in correct hand. This explanation made me think twice and I said yes to book an isolation room.

The Expensive Treatment
Next, the problem is how to get money at least RM 20,000 or Rp 50,000,000 for first two or three weeks. At that time, I had only about RM 2,000 and USD 1.380 cash, Rp 1 million and about RM 5,791 can I withdraw through ATM. If we sum up, it was about RM 13,000 far from enough. I still need another RM 10,000. What I could do is to borrow from my farther. Before Ramadhan, I lent him about Rp 30 million and now it is time to ask money back. He sent Rp 10 million on Friday and another 20 million on the following day. In total, I have RM 25,000. I though it will be enough for induction treatment phase, I suppose. Then I have courage to go to GMC (Gleneagles Medical Centre) if even I still looking the alternative hospital, such as Negeri or Kerajaan Hospital.

Difficult Decision
I had a very long discussion which hospital should we go. We talk about the plus and the minus of both hospitals. Finally, we decided to get the best treatment for Ghina. Therefore the option is GMC and I want to get treatment soon. I could not wait until Monday and spent two more nights in Lam Wah Ee. It was not only the matter of extra cost but also expanding and getting worse of disease. I met dr Adele and asking permission to go to another hospital if I should wait until Monday. Then, she contacted GMC again asking for an isolation room. Luckily, the GMC prepared a room and I could go in that Saturday. The room was available at one o’clock. It was a good-news and then we prepared to check out Lam Wah Ee hospital.

Lam Wah Ee Medical Bills
At 12 noon on Saturday, the bill was ready. I came to cashier and asked how much the total cost for four days in the hospital. The total cost was RM 1,742. It was slightly lower than deposit, which was RM 2,000. She returned back some RM 255. The biggest expenditure was for Bone Marrow procedure, accounting for RM 540 and followed by Laboratory test, RM 373. Pharmacy (drug) and medical supplies were close behind, RM 266.65 and RM 223.8 respectively. Consultation fees for dr Adele Tan Guat Kean were only RM 210, about RM 50 per day or precisely RM 35 per visit. Nurse care was only RM 40 or Rp 10 per day. This cost was not for only one person but for a number of nurses. I don’t know exactly the system how they pay the nurse here. It seems that their salary was not so high, but why their behaviour, attitude and the motivation were quite positive. It is very contrast with situation in Indonesia. Another interesting phenomenon was the bill for the room. Actually I should pay RM 3 x 25 = 75 for the room, but I just paid RM 30 or less than IRD 100,000. In addition, we should pay some RM 5 per nigh for Lodger. Interestingly, the member of family who take care of the patient should pay RM 5. Even if they provided the food plus Milo, cakes and hot water every day, the bills ware only RM 5. It seems that there was a discount for these three items: Room, Lodger and Food.

GLENIEGLES HOSPITALS

The First Impression
On the same day we discharge from Lam Wah Ee hospital, we went straight away to GMC. We arrived at 2pm and registered at external affair desks. After we waited for a while a courier came and took us to 5th floor. The way they treated us, the building’s decoration, the lifts and the rooms were quite similar to hotel. Yes indeed that our room facilities, 505 like five start hotel. Beside hospital equipments, there were a satellite TV, fridge, tables, sofa and bathroom. In addition, our room view was so gorgeous. From the 5th floor, we can see some beautiful parts of George Town City of Penang. No more than half hour after an administrative person came and asked me to go down to admission office to pay some deposit.

Deposit
At admission desks, an officer explained me the costs for the rooms and the amount of deposit were needed. Single room charges was RM 300, two-bedded was RM 160 and four-bedded was RM 130. In addition to room charges, we also should pay for nursing care, meals and lodger which accounting for RM 50, RM 40 and RM 10 respectively. For the case of Ghina, no much alternative we had, except isolation room which was similar to Two-Bedded Room with additional RM 50 per days for isolation. It was a standard charge for all infectious cases requiring special nursing. The total fixed charges for the isolation room was RM 270 or IRD 650,000. For such type of room, the amount of deposit was needed as much as RM 2,500. At the beginning the amount of money was not so significant different with Lam Wah Ee hospital. We feel confident, we shall be able to fund at least until finish the first phase of treatment, 5-6 weeks. At the same time, I also paid for broadband internet access voucher RM 5 for one hour access. Surprisingly, the hospital also charge the patients for internet access where in Lam Wah Ee was provided free. An admission officer firmly said that there was no free thing available in this hospital. Her answer made me a little bit scary and it showed me the business culture of hospital. Again, I do not have much alternative, unless pay for access and use it wisely.
A good thing of hospital
In term of facilities, like I already mentioned above, it was like a hotel room. We feel like our private room, except the door was quite often by nurses who also came without notice. The food we can order as we like. There was a variation kind of cuisines available such as Malay, Oriental and Western food. Every half our, the nurse came and inspected of Ghina’s condition. Her body temperature was always monitored. They were very concern about body temperature. They argued that fever can influence other functions of body and should be examined every half hour. The attitude of nurses was very positive and very friendly. Every visit they also tried to make Ghina cheerful. This might be related with payment, RM 50 per day. It is needed a special attitude to motive the patients to face a long term treatment in hospital. There is no doubt that whoever suffering from this kind of disease needs a very special attention, care and love. Doctors also visited twice a day and it seems that they have a good coordination among doctors and divisions.

Blood Donation and Fees

Hospital Bills

Chicken-Pox Expenditure
It is very stressful spending some RM 12,251 or IRD 30,628,675 only for chicken-pox treatment. I could not understand how they perceived the degree of curiosity of chicken-pox for Leukaemia patient. This amount of expenditure was really made me stress. This is a very common type of diseases in my society. I was suffered from this disease when I was child and it only treated at home.

Setelah sekian bertahan, akhirnya terpaksa keluar dari RS