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Hepatitis Chronic becoming Acute- what I did

Here I want to share with you some signs which may show the Hepatitis B is moving from chronic to acute based on my mom’s symptoms. This is from my experience with my mom.

My mom has been having chronic hepatitis B for at least a few years. Precisely for how many years I do not know as my mother did not tell me. In fact, I only found out from the doctor after I started to insist to accompany her for medical check-ups (as she got older she became more frail).

I suspect my mom could have contracted the Hepatitis B virus through taking her favourite raw oysters, clams and cockles (this illness could have been easily prevented- go for a blood test and take the 3 vaccination jabs please). Due to radiotherapy as part of the treatment for tonsil cancer,  her throat is constricted there is a lot of food she could not take. Therefore whenever she attend high tea with friends, she could not eat hard or hot food. She would go for the raw oysters which were easy to swallow.

(Note: However, recently a TCM doctor told me that it may not necessary be due to shellfish. She said as a result of my mom’s radiotherapy which affected her food intake and nutrition, causing gradual weakening in the organs.)

My mom’s original physician diagnosed her condition as chronic and did not put her on medication. He also stopped ordering scans for her- in which could have resulted her condition not being picked up (we now go to another hospital to seek treatment for my mom).

Since last year, my workload had increased tremendously after a capable colleague had been transferred – and no one could replace her capabilities. I had to do her portion on top of my already heavy workload. By end of last year, I was working late literally each night.

That was when my mom’s condition started going downhill. I do blame myself for not really paying attention to the changes in her.

 

It started when I noticed she was always wanted to rest on the bed. The duration of rest got longer and longer. It is not that she could sleep. She mentioned she feel tired.

When I questioned her if she has eaten, she would say she has eaten. She could say it with conviction. Looking back, she had been forgetful and most probably have not eaten. However as I had worked long hours, I was not able to verify and took her words as good (most of the time I was also too mentally exhausted after each workday and needed rest badly myself).

Also she had lost interest in many things because she had no energy to do them. For example, she had always been particular about Chinese New Year rituals and preparations from as long as I could remember. But this year, she just went to bed and sleep. If questioned too much, she would get moody and angry…..then go to bed and refused to respond.

When I was at home, I realized that she would say she has eaten when I know for a fact she did not.

There have been red line is on the whites of her eyes (in TCM, the eye corresponds to liver health) for quite a while. For those with prolonged red line on the whites of the eye, please see a Traditional Chinese medical doctor (as sometimes issues with internal organs may not show up in blood tests and scans until it is too late).

There is also another strong tell-sign….her urine became tea coloured (you know, exactly the colour of lemon tea). It is very different from our usual urine which is yellow in colour (dark yellow if you do not drink enough of water). It also stinks terribly (yes, all urine stinks but not as stinking as the urine of an acute hepatitis B person). My mom tends to be forgetful and forgot to flush at times when visiting the toilet… which I I noticed after being the next person to use the toilet.

By Chinese New Year time, her entire body started to become yellow…..which is a sign of jaundice. By then, she was spending more than 23 hours a day in bed. She had lost her appetite and hardly ate anything.

We literally took emergency leave and begged her to go to hospital which she adamantly refused but finally gave in. The doctor said she has to be hospitalized as she is having acute jaundice.

It is surprising when such emergency happened to a loved one, my priorities became very clear.  I knew I had to be on leave to look after my mom. Fortunately my bosses and colleagues were very understanding.

By the time she was warded at the observation ward at the Emergency it was about 10pm at night. The next morning when we visited her, she was moved to a medical ward. She was in a very bad mood. Every like 10 minutes she was complaining why she is in the hospital. She was delirious and very forgetful. At times very angry. The second night I stayed with her and she was waking me up every 30 minutes to 1 hour to ask where she is. She got very angry at times.

About few times a day they have to take blood test. At times she was cooperative but at most time she was angry and downright rude. It was so not typical of her especially as she was a former nurse herself. Reasoning with her did not work as she did not seems to listen to reason.

Fortunately the nurses were understanding and were not offended by her. They explained in layman terms that as now the virus spread all over her body including her brain, it is not unusual for patients to be disorientated and in a very bad mood.

 Treatment provided in the hospital

Basically, they hospital only placed saline drips on her and gave her laxatives as her body is bloated due to water retention. About 3 days of doing that I noticed her condition had improved slightly and she was not so yellow. But she would be asking me every 10, 15 or even 30 minutes on ‘why am I here?’, ‘I want to go back!!’.

Few times, I left her for a while to go back to take a shower, change clothes, buy lunch. However within 20 minutes, I would get a call from someone in the hospital- there is a kind lady taking care of her mom opposite us who took down my number to call me when my mom got a little out of control. The nurses also commented she had attempted to run away.

As a caregiver, I do not think I would be able to survive if I could not sleep at night. By the 3rd day, the specialist asked if she wants to be discharged because her blood tests showed some slight improvement. I was very worried if her condition would get worse once she is out of the hospital. However,  I thought about the treatment in the hospital which consists of drips and laxatives.

The diagnosis written by the specialist is: “decompensated liver cirrhosis with hepatic encephalopathy . Liver cirrhosis with prominent CBD (6.4cm) and intrahepatic ducts. No stones seen ”

Treatment provided by hospital:

Withold pronanolol in view patient has encephalopathy, restart later in clinic. IV vitamin K 10mg stat. Syp lactulose 15m TDS. IVD 2 pints/day Dextrose saline + 1g KCL each pint.

Meaning for acute hepatitis:

  • it is important to get sufficient nutrition so that the person has energy
  • must  reduce the fluid retention in the body

In order to take care of her, I have to have enough rest myself. If I could not sleep at night, I would not have the energy to care for her.  Also she was giving the staff a hard time. Hence even though I was afraid, I agreed.

Surprisingly, the moment she got home and saw familiar surroundings greeted by her furry companions (our pet dogs who also missed her terribly), she was back to her normal self. No more throwing tantrums and insisting to go back home.

From that day onwards, I am very particular and make she eats 3 full meals a day. Each day, I made sure she ate breakfast before I go to work.   I either set the slow cooker to make porridge (cognee) or I would pack something back. I came back each day for lunch to make sure she actually eats her lunch…and gets a hot meal. The dinner is usually the same porridge. She absolutely hates porridge but I would bribe and persuade her with some local delicacies which she likes (nyonya kuih, kuih angku, kuih ubi, buns).

After a few weeks, of making sure she actually eats, she seemed to have gain more energy.

The scan results later showed a blocked bile duct which causes build up of fluid retention causing the onset of her jaundice.

The specialist prescribed entecavir 0.5mg tablet medication which she is required to take once a day for her hepatitis. The first month I did not let her take the tablet as I was worried of the side effects. On subsequent visit, the specialist lectured me and she said the medicine is necessary to prevent the virus spreading to her body. The medicine will not cure her but it would hopefully prevent her liver from failing further due to the virus. The doctor mentioned there are a number of patients taking this medication and she had not heard any patients complaining about any side effects. After the visit, I see to it that she take her medication daily (the medication need to be taken either 30 minutes before meal or two hours after meal, once a day).

Temporarily I got someone to help me out to do housework and to cook for my mom at home. Each day the lady would cook hot meals for my mom for lunch and dinner. When I asked my mom if she has eaten she always answered yes but when I checked with the lady she would sometimes tell me that my mom had not eaten.

My mom being her polite self would nicely eat the food that were prepared for her as she does not feel nice to decline. Together with the medication and proper meals, her condition improved. Her bloating reduced and also the tea colour in her urine gradually changed to concentrated yellow colour. The lady also kept her company and that is also another factor….she did not feel so lonely and it also impact her recovery. At the same time, her friends also came to visit and were very concerned for her.

Lessons learned:

  • nutrition is important– I am not sure if there is any link between liver issue and forgetfulness. Monitor personally if the person have eaten proper meals
  • turning yellow is not normal….usually the yellowing of the skin is more obvious in florescent light than natural light. If you see the person is very yellow, and if you doubt your eye sight, ask another person to sit alongside and compare. 
  • if the person is not his/her usual self for weeks…..always tired, no energy and no interest in anything, go for a blood test and scan to check the condition of the liver.
  • increased forgetfulness and delirium when the person is usually not like that
  • the person appeared to have put on weight even though he/she is losing appetite to eat. For my mom it was due to fluid retention/bloating (ascites). The bloat is specific- at the abdomen and at the ankles.
  • all nutrition food like Ensure and Enercal is not enough. The person need to take more hot meals like noodles soup, steamed fish  and porridge (cognee). Preferably home cooked as the food outside contains a lot of MSG
  • do not take it personally if the person has erratic mood swings. My mom said lots of nasty things to me especially in the hospital when she was angry that I warded her there. Be patient- the virus had got to her head.

 

Eventually….

The lady could not stay long, My mom also suffered a fall and was at first in a lot of pain and require full time care. My company approved my 1 month of no pay leave but eventually I see my mom needed complete looking after and care. So in April, I resigned from my corporate job to take care of my mom full time. No regrets as I am able to take care of my mom myself because it is hard to find anyone who could take care of her better. It is also difficult and costly …..if I get a maid, she lacked the skills but if I get a nurse, I could not afford with her salary.

Now I am used to the daily schedule of taking care – marketing, preparing, cooking and cleaning. Therefore I have time to write again during my spare time. I would write more articles on taking care of an elderly person based on what I have learned from taking care of my mom.

 

 

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