Thursday, May 17, 2012

A Real Nightmare

An update about my niece condition. In my post dated 31 Jan 2012, I mentioned my 24 years old niece was diagnosed with end stage kidney failure. One of the 3 specialist did mentioned that, without immediate dialysis, my niece can only survive for a maximum of 3 months. It has been a really hard time for my niece and our family member especially my brother and sis-in-law (my niece parents). My niece went to Sarawak General Hospital (SGH) for weekly follow up where the doctors advised her to prepare and go for dialysis. My niece and her parents refused to do so as was told by the Traditional Chinese Medicine (TCM) doctor, there is hope in her kidneys if she does not go for dialysis. TCM doctor said, once she started dialysis, her kidney will be lazy to work and will not provide positive response to her TCM medication. Everytime my niece to SGH, she was terrified and worried as the doctors keep pushing her for dialysis. 

Within the period from Jan to Mid of Apr, my niece still taking the TCM + tradional herbs (all kinds of them) and some direct selling products. I was quite mad at my brother for forcing my niece to take the direct selling products. A lot of quarrels happened as well during this time. My niece was feeling really weak and sick from Jan to Mid of Apr 2012. Everytime I visited her, I feel so painful. She will share most of her sadness with me as it's hard for her to communicate with her parents. Most of their conversation ended in quarrels and feeling hurt. Everyday was filled with tears, tears from my niece, her parents and all of our family members. Never before I ever experience such a sad and bitter experience. Relatives started to visited my niece and my niece was always in bad mood. She said she feel very very sick and she not able to explain her sickness with words. She vomited most of the time, feel itchy on most of her body parts, no appetite at all, swollen legs, no energy, breathless and feeling tired most of the time. Towards Apr 2012, she told me she cannot sleep at night and she also don't dare to sleep because she worried she will never wake up again. She told me she started to feel there's a 3rd party surround her..

The TCM doctors said my niece need time to adjust to the TCM medication, but he not able to tell when my niece will have the positive sign. I was really angry with this TCM doctor. But my niece and her parents still put high hope on this TCM doctor. At last on 16 Apr 2012, the TCM doctor said it's better for my niece to admit to SGH for blood transfusion. On 14 Apr 2012, my niece already look terrible and really weak. She hardly can walk. The last appointment with the TCM doctor was on 16 Apr 2012, very early morning. By 9am, my sis-in-law called me, saying that my niece on the way to SGH emergency unit because she's in critical condition. During noon, she SGH immediately arranged for her dialysis through her stomach. She was really scared but still conscious. We all were really worried. SGH doctor said her dialysis will continue for at least 60 hours due to high urea and creatine level in her body. On the second day of her dialysis, she is a bit better. On the third day of dialysis, she sleep most of the time. On the forth day of dialysis, she also sleep most of the time. On the night of the forth day of dialysis, my niece turned into someone else. She become out of control. Things were really bad. She became violent and aggressive as well. We didn't know what to do. We heard that dialysis patient can become out of control, but we never know what is the actual meaning of 'out of control'. Doctors said, maybe my niece body couldn't adapt to the sudden drop of urea and creatine level during dialysis. My niece become unstable. She didn't eat for days and look really terrible too. 

Her unstable condition lasted for 2 weeks. It was really hard for my sis-in-law to take care of her. Everytime we visited her at SGH, my niece would cry and speak funny languages with some weird actions. Some times, it was like she's talking to the unseen creatures. Most of our visit to her ended in tears and pain in the heart with thousand of question marks in our head.

During this hard time, many friends and relative offer all kinds of help. On 27 Apr 2012, my church Father visited her. During this visit, my niece broke down and cried badly, shared her worries and concern. The next morning, my niece feel a bit better and said she feel like woke up from a dream. Her condition slightly improved but she still always in bad mood. At the same time, my brother also seek all kinds of help and treatment from anyone who can offer help including from mediums. On 9 May 2012, my niece called me and she sound like the real her. It was a really bright and light moment for me. I visited her on 12 May and she almost become my actual niece. We chit chat for quite some time. She is on peritonial dialysis training at SGH. Everyday, she needs to do her continuous ambulatory peritoneal dialysis (CAPD) four times at about 4-5 hours interval, with the help from her mum. This training will last for a few weeks. I visited her again yesterday. She is much-much better. Occasionally still asking me if her kidney will recover. All I can say is we hope and pray for it, but we need to be ready for the worst. She said she hates it when the doctors keep telling her that her kidney will never recover. I told her that doctors must convey the real message to their patients and do not want patients to have empty hope. Anyway, I do really hope and pray that my niece kidney still has hope. 

Her life will definitely change after this. Now is her final semester at university but she not able to attend her final semester. Her final exam will be next month. Most probably she will not be able to attend her final exam and her industrial training. Which means that she will not be able to graduate. I know she is really sad about this part. But, I told her, take good control and care of her health first. She can extend her study for a later time. 

Life not only change for her, but for everyone in our family as well especially her parents. We all still not sure the road ahead. We can only take one thing at a time. I hope my niece will become more stable so that she can perform the CAPD herself. I am happy that now she started to learn about her CAPD diet (what food should take, what food should avoid). I wish my niece will see hope in her life. I wish my niece will be strong. I know it is a tough time for a 24 years old. I told her that if she can go through this tough part, she will have nothing to fear in future. I wish my niece all the best and we all really care and love her.

13 comments:

  1. Continue to hold on, Yan. Never cease to pray hard for your niece's recovery. We'll all be praying for her as well.

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    1. Hi CY, thank you so much. Yes, we pray and hope for the best...

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  2. hope she is getting better.
    God Bless

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    1. Hi YSLim, thanks and appreciate that...

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  3. step back and reconsider the advice I seek from my nutritionist friend (a previous 29yrs experienced medical doctor).
    he's actually one of the students of Tun Dr. Mahathir & Tun Dr. Siti Hasmah last time, I strongly recommend his advice would be the best you can take for your niece.
    though you might feel annoying, but I ain't trying to sell or promote anything to you or your family.

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    1. Hi Karl, thanks for your sharing. My niece is now learning and getting advice from the SGH nutritionist as well. But i have never met the nutritionist. Maybe you can share more about the details with me? perhaps can email me the info? Thanks again for your concern. Really appreciate that.

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    2. this reply from my Nutritionist friend I mean, read again:


      below is reply from a 29yrs experienced GH medical doctor (previously), now he is a well-known nutritionist. from my point of view, his advice would be the best for your and your family's reference.

      [quoted]:

      I am very sorry to hear such news, but there is always hope for your niece. The very first important thing is she must be always be positive. There are many kinds of kidney problems, basically dialysis is done for those with total kidney failure when the both of the kidneys of the patient fail to function totally. Optional cases are those of partial kidney failure cases where dialysis is pending.

      Whatever the condition is, always follow the doctor's advice. There are dialysis patients who live a normal life only that they have to depend on dialysis for their entire life. She had to go through that.

      While her health condition has to be taken care of more than what we do. Her specialists will advise her to follow the diet not that strict except that salts and other minerals must be taken with precautions. Water soluble vitamin like B-complex and BioC can be taken; the all plant protein can be given especially immediately after every dialysis. Our herbal products would not aggravate the condition and thus can be taken. She must always keep up her immune system well.

      There is a herb can 水龟草, my doctor friend of mine always recommend to his patients and there are many kidney patients who try this herb have their problems improved.

      [out quote]

      anything regarding the vitamin, please take consideration to give the best for your niece, please be advised again. hope this can help.

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    3. Thanks Karl, that's very kind of you. Now, I know that you're referring to the comment for my post dated 31 Jan 2012. Yes, now my niece is taking this boiled 水龟草 drink. I think she seriously drink this 水龟草 drink since last 2 weeks (when she's more stable). She refer this drink as 'magic drink'. I did shared with her about this 水龟草 in Feb 2012 but they're too busy trying and taking all other sorts of medications (which was suggested by others - with proven recovered medication). But, sad to say the other medication didn't show improvement. Last month, my brother got to know a Sifu who advised my brother to boil the 水龟草 drink for my niece. The Sifu said this 水龟草 drink is not only for kidney patient or dialysis patient for also for anyone who wish to have healthy kidneys. Now my brother started to plant this 水龟草 at home. Thanks Karl for the sharing :)

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    4. if only you take the advise earlier, things will not go further down as you or your family experienced in "a real nightmare", I personally can feel her pains and inner struggles from your words. see anything I can help in further to get your niece back to her university as quick as I can, refer again to my friend's advise, you'll get more information. email me at kent1157@yahoo.com shall anything un-clear, or you need reference.

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  4. Hi Yan,
    I have a friend who has kidney failure and depends on dialysis since he is in secondary school. I met him during my university day at university Malaya. He graduated in his four year course in chemical engineering. I remember he go for dialysis two or three time a week at university hospital. He then further his master study and doing research for lecturer. He is a Christian who really touch me a lot. Probably he can share his life experience with your niece. Let me know if you need his contact...

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    1. Hi Margaret, thank you for dropping by and for your sharing. It's great that you still keep in touch with him. Ok, if my niece need any further information, i will let you know. After discharged from hospital for about a week, she's not more stable. But, i think she still hard to accept the fact. But i dont blame her, I can understand that. Your friend is on haemodialysis (clean blood using machine). so, it's 3 times a week and 4 hours for each time. my niece is on peritonial dialysis (cleaning using a special liquid through stomach, 4 times a day, and about 30mins for each session). for her study, my niece will continue her final semester locally and now she's still getting more information. Thanks again Margaret.

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  5. Yan.. Ya.. U r right... My friend is on Haemodialysis treatment... Seems like ur niece treatment is more complicated..my friend used to share with me his experience like fainted in the toilet after the dialysis and how God take care of his life to survive till today and I am really amazed of the way he look at his life. He seems to be more optimistic than anyone. I remember tears just rolled down my cheek when I saw his swollen arm due to the regular treatment but my friend just is the one who cheer me and ask me to treat him as normal person. I am really amazed of his courage.. I believe your niece will be like him next time..pray for the best...

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    1. Margaret, Specialist said they recommend Peritonial dialysis (PD) for my niece due to her young age and also due to cost and availability for Haemodialysis (HD) session locally. It's expensive and GH could no longer support 'outside' patients. My niece personally chose PD due to the cost and it's more convenient. She also said she does not like the swollen arm part... as for PD, she still can hide it with clothes... I really admire your friend. My niece will still need time to adapt. She's always in my prayer. Thanks Margaret for the sharing. God bless us all...

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