A Real Nightmare: End-stage kidney failure

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 specialists did mention 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’s 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 a positive response to her TCM medication.

Every time my niece went to SGH, she was terrified and worried as the doctors keep pushing her for dialysis.

Within the period from Jan to Mid Apr 2012, my niece still taking the TCM, traditional herbs 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 Apr 2012. Every time I visited her, I feel so much pain. 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 feelings hurt.

Every day 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 visit my niece and my niece was always in a bad mood. She said she felt very sick and she was not able to explain her sickness with words. She vomited most of the time, feel itchy on most of her body parts, had no appetite at all, had swollen legs, had no energy, was breathless and feeling tired most of the time.

Towards Apr 2012, she told me she cannot sleep at night and she also doesn’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 needs time to adjust to the TCM medication, but he is 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 9 am, my sis-in-law called me, saying that my niece was on the way to the SGH emergency unit because she’s in critical condition. At noontime, 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 the high urea and creatine levels in her body.

On the second day of her dialysis, her situation slightly improved. On the third day of the dialysis, she sleeps most of the time. On the fourth day of dialysis, she also sleeps most of the time.

On the night of the fourth day of dialysis, my niece turned into someone else. She becomes 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 patients 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 becomes 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.

Every time we visited her at SGH, my niece would cry and speak funny languages with some weird actions. Sometimes, 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 thousands of question marks in our heads.

During this hard time, many friends and relatives 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 feels like waking up from a dream.

Her condition slightly improved but she is still always in a bad mood.

At the same time, my brother also seeks 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 sounds like the real her. It was a really bright and light moment for me.

I visited her on 12 May and she almost becomes my actual niece. We chit chat for quite some time.

She is on peritoneal dialysis training at SGH. Every day, she needs to do her continuous ambulatory peritoneal dialysis (CAPD) four times at about 4 to 5 hours intervals, with the help of her mum. This training will last for a few weeks.

I visited her again yesterday. She is 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 is 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 to a later time.

Life not only changes for her but for everyone in our family as well especially her parents. We all are still not sure about 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.