Tuesday, December 8, 2009

"It's Tolerable"

Before I was diagnosed with Hepatitis C (Hep C), I had very little knowledge of the disease. I don't really want to share my experience of the disease, not because I am selfish but I hate to recall the misery that I had to endure for 6 months while undergoing treatment. However, after giving it a second thought, I figure that my story may be useful to all Hep C patients who are currently undergoing  or about to start treatment.

I was not aware that I had hepatitis because  there were no symptoms whatsoever. It was indirectly detected through my routine 6-monthly blood test. There was an abnormality in the reading of my ALT from the liver function test. As a result of this abnormality, the doctor ordered a Hep B and Hep C tests be carried out on me through another blood test. My worst fears were confirmed when I tested positive for Hep C. At this juncture, I was still not fully aware of what was in store for me. Of course, I did what most people would do - surf the internet. I gathered a lot of information about the disease. I thought I was quite prepared to face the challenges. The only thing that haunted me was the condition of my liver. I was terribly scared that my liver had reached the cyrrhosis stage or to put it simply, a stage where the liver is so severely damaged by the virus, that treatment is quite useless.

I was referred to a gastro- enterologist,  at the Hospital Sultanah Bahiyah Alor Star. He ordered more blood tests be carried out explaining that sometimes errors happen during the scanning of the blood sample. I was completely ignorant of what he was trying to explain but I prayed hard that my earlier blood tests results were indeed a mistake. There was a flicker of hope.I had another appointment with him about ten days later and after studying the test results, he told me what I already knew, of course. All hopes were dashed. I had to do another blood test, this time to determine the strain of the virus, more precisely, the genotype. Alor Star hospital has no facilities to carry out this test. My blood sample had to be sent to The Liver Foundation in KL, so I had to wait for about a month for the results to come. The doctor told me that the type and duration of the treatment would depend on the genotype of the virus in my body. I remember asking him about the effects of the treatment and he briefly explained as requested. But, as if to lessen my fear a little , the good doctor (the gasro-enterologist) added "It's tolerable".

While waiting for the results from KL, I had to do a liver biopsy. This is a minor operation where a small incision is made in the abdomen to extract a bit of the liver tissue for the purpose of determining the extent of  damage to the liver. I remember being wheeled into the operation theatre for the biopsy. First they scanned my liver and marked the exact spot for the incision. The lady doctor told me my liver looked good. I was quite happy at this piece of news. Soon after, two male doctors, a Chinese and an Indian, walked in and told me that they would begin the biopsy. Frankly, I was quite scared and I prayed that it would not be painful. The Chinese doctor told me that his friend the Indian doctor would do the biopsy and I just nodded my head. What followed was something quite amusing but at that moment it made me want to jump up and run away. The Chinese doctor was giving instructions on how to use the instrument for the biopsy to the Indian doctor. The Indian doctor was toying around with the instrument, presumably practising how to make the incision and extract the tissue. I was trembling with fear and my heart was beating at an F1 speed, but there was nothing I could do. It would have been a liitle easier on me had they been a little bit more discreet with their " teaching and learning" process. A local anaesthesia was admininistered and the Indian doctor proceeded under the supervision of the Chinese doctor The whole procedure was over in less than 5 minutes and I remember asking "Is that it? ". The Indian doctor answered "Yes, That's it". I was so relieved and exclaimed "Why doc, it's quite painless! " and to which he retorted "Thank you, maam, that's a compliment".

I spoke too soon, for the moment I was wheeled out of the operation theatre, I felt an excruciating pain in the abdominal area. It was very painful and even more intense with every breath I took. I told the nurse to inform the doctor and she left me on the stretcher to seek the doctor's help. After a few minutes she came back and told me that  the doctor said it was quite normal to feel the pain. I was taken back to the ward. Anyway, inspite of the pain, the doctor told me the biopsy was sucessfully carried out without any complications and I was discharged later in the evening. The pain was gone the next morning but like any other operation, minor or major, each time you sneeze or cough or laugh, you feel the pain. After about a week, the pain was completely gone.

The results from the Liver Foundation and the biopsy were revealed to me during my appointment with the good doctor, the gastro enterologist. He told me that my genotype requires a 6-months treatment period and that the biopsy results showed that the damage to my liver was at stage 2.Well, at least it had not reached the much-dreaded cyrrhosis stage!

I started my treatment on the 3rd of March 2008. I was warded one day earlier  so that when they administer the first treatment, they were able to monitor my tolerance to the medication. The gastro enterologist told me if there were no complications, then I could go home the following day. The treatment comprised of  daily oral medication of ribavarin and a weekly injection of interferon. At this point, I knew what to expect. The good doctor told me the effects of these two drugs are headaches, nausea, loss of appetite, loss of weight, loss of hair, tiredness and in some extreme cases, depression sets in. But again, the good doctor  repeated his signature phrase of " It's tolerable".

I was given my first dose of ribavarin and interferon at about 2.30p.m. I remember telling my husband who was with me at the hospital that I felt OK one hour after the medication. Two hours passed and still there were no effects. In fact, I was OK throghout the night and I was confident I could pull through this one. The good doctor came round the next morning to check on my progress and when I told him I felt fine, he warned me that some people took a longer time to experience the effects. Anyway, he was quite satisfied with my progress and he allowed me to go home.

Later that same evening I  began to feel a little dizzy and I realised that the food tasted bitter. By the next morning, I knew for sure that the effects of the medication were slowly but surely taking  its toll on me. I woke up with a terrible headache and felt very weak and drowsy. All foods tasted bitter especially plain drinking water. I told myself that I would eventually get used to these side effects. I read from the internet that slowly your body's tolerance to the drugs would improve. I prayed that my condition would not worsen. Unfortunately. it got worse. Most of the time, I would be lying down, largely due to the constant dizziness that plagued me. I became very weak because I had no desire to eat or drink, everything tasted bland and bitter. Before the treatment, my weight was 49kg. After 2 weks , it went down to 47kg. After much persuasion from my husband and mother, I forced myself to eat a little bit more than what I really wanted.

Every 2 weeks, I had to do the liver function test (LFT) and a full blood check (FBC). Based on these results, the good doctor would then advise me on the dosage to be taken. The medication has a significant effect on the haemoglobin level in the body. If the haemoglobin level gets below 7.0 g/dL, a blood transfusion is deemed necessary. After only 2 weeks of treatment, my ALT reading showed a marked improvement from about 90 U/L  to about 14 U/L. However, my haemoglobin dropped from  about 11 g/dL to 8 g/dL. The sudden drop in haemoglobin contributed to my extreme weakness. I was so weak I was no longer able to climb a short flight of stairs. The good doctor had to juggle between lowering my  ALT reading and  raising my haemoglobin level. I was closely monitored so that he could compromise these 2 variables. I was also losing my hair at an alarming rate. I remember asking the good doctor about this and his reply of " You won't go completely bald" prevented me from pursuing further on this issue. I suppose, to him, semi bald is better than Hep C. Well, I have to agree to that, though reluctantly.

During one of the scheduled appointments, my haemoglobin dropped to 7.2 g/dL. In fact, my headache was so bad, I had to lie down in the good doctor's room while waiting for him to come. He glanced at my blood test results and immediately warded me. Fortunately, when they did another blood test, my haemoglobin went up a bit, 7.8 g/dL. So, I escaped the blood transfusion. I was discharged the next day.

To make matters worse, I had an attack of vertigo in my fourth week of treatment. I thought the headache was bad enough. This was TERRIBLE. The drugs were invading my body with a ruthless vengeance but I guess  I fought back, too. The vertigo went off after 2 weeks and after that I was beginning to show some improvement. I realised then, that my body was beginning to relent  and accept  the drugs.All the side effects were still there but I was slowly  getting used to them. My life was "better" from then on.

Five months after I started the treatment, I developed a severe backache. It was so painful, I could not sit  down at all. The good doctor then referred me to an orthopaedic surgeon. An MRI was performed but no slip discs or bone dislocation were detected. The orthopaedic surgeon told me that this might  be one of the side effects of the Hep C treatment. When I queried about this probability to the  good doctor, he was non-commital. He just smiled. Whatever that means, I don't know. The back ache went off after 1 month. I woke up one morning and discovered that I could sit without feeling any pain.What a relief.

I completed my treatment on the 14th of August 2008. I slowly regained my energy. After a month I was almost back to normal. I got back my crowning glory, thank goodness for that!  To all Hep C patients, just hang on, don't give up. To sum up my experience, I think I will have to borrow the good doctor's cliche of "It's tolerable".



  1. Thank you so much for sharing your story. I am sure that many Hep C patients will find it educational and interesting. CONGRATS on clearing the virus and for letting others know that the treatment "is tolerable" We need more of the "positive stories" on the internet. Take care!

  2. Kak Muni, You have been my inspiration and you are a beautiful person! May Allah bless you.

  3. Thanks Iki. Glad to know that you follow my blog.

  4. Assalamualaikum..terima kasih kerana berkongsi kisah..sy juga telah disyaki menghidapi HVC..ttp doc ckp masih belum boleh d pastikan lagidan keputusan adlh inappropriate..50/50..sama ada +ve or -ve.sy menderma drh pd march 11 di panggl ke jab pathologi 27/7..doc ambil drh utk hntr ke kl..pd 4/10..result keluar dn doc bgth weak reactive tetapi masih inappropriate.sama mcm masa panggilan pertama kptsn weak reactive..mggu depan 19/10/12 sy dipanggil lagi utk tahu result drh tahun lepas dan di nyatakan utk membuat ujian drh sekali lagi..saya sgt takut kerana terlalu pjg masa yg diambil utk inform result 4/10/11..saya gakut klu leadaan makin teruk tetapi sy amt berhrp yg saya bebas..
    Sy ad mmbuat test drh pathlab(swata) result -ve..tp gov kata weak reactive..
    Bila sy tya megenai rawatan dn bolehkahbpnykt inibdirwt doc ckp pnyakit ini xboleh cure dn xda ubt..rwtan hnya utk kurgkan symptom..terasa dunia gelap..hilang harapan..tiap hari sy menangus..syukur suami seorang yg memahami dn minta sy berdoa minta d jauhkan pnyakit ini..

  5. Bagaimana keadaan puan sekarang?..saya sangat takut..