October 14, 2011

Raya ka, PilihanRaya

Hari tu masa diorang buat sambutan Raya 1 Malaysia tu, it was so happen di adakan di kampung kami. Masa PM mai melawat rumah sebuah keluarga yang memerlukan tu, memang betui-betui belakang rumah aku.

Jalan raya pada hari tu memang jam betui lah. Nak masuk pun tak boleh, nak keluaq lagi lah tak boleh. Dari pukui 9 pagi dah jam dah.

Hujan pulak tu dari malam sebelumnya sampai pagi hari acara tu. Padang sekolah tempat depa buat acara tu apalagi lecah macam bendang lah.

Aku dengan adik aku pi jugaklah kat sekolah tu, nak makan free lah konon nya. Kami jalan kaki saja, walaupun depa kata ada bas. Tapi sorang kakak tu habaq yang, depa yang naik bas, dari depan rumah aku ke sekolah tu (1/2 KM saja) sampai dalam masa 2 jam. Nasib baik aku tak naik bas. Jalan pun tak penat mana pun.

Aku tak nak cerita banyak, nanti aku upload gambaq-gambaq. Hang pa tengok sendiri.

September 13, 2011

Aidilfitri 1432H

This year is the first year my hubby celebrated hari raya aidilfitri as a kidney patient. Eventhough it was hari raya day, if it is the schedule dialysis day then dialysis will have to be done. So, for this year raya, hubby's day started at 3.00am. Angah and syia sent hubby to KPJ for the dialysis. That way it freed from the task of sending him so that I could start cooking.

However all the preparation and planning had to be done by me, with the help of the girls. Previous years, shopping for the raya preparation mostly would be done by hubby and/or me. This year, Kak Long and Angah followed me to the wet market, send the chicken to hubby's brother's house, to A tu Z to buy the flowers decoration etc. We were out early morning and was only home around 5pm.

I had to do the marketing on sunday because I had to bring my maid to the immigration office on Monday. But it was a vood plan because the girls helped to ut the meat and veggies while I and the maid were out of the house. By the time we were home, everything were already completed. Alhamdullillah. That's the beauty of having 4 daughters!!!

As always my main dishes were rendang daging, ayam serai lengkuas, sayur lodeh & nasi himpit aka lontong,kuah kacang,ketupat palas.Like last year the ketupat palas, I made them myself, I maid them in 3 flavours, plain, with kacang andjagung. Very adventurous right? Hehehe, terlebih rajin lah tu. Cuma yang kacang tu terlembik sikit, yang lain semua ok.

But, this year my cooking is a little lack of flavour, kurang masin, kurang manis, to cater for hubby's taste too. So we have to also serve salt as a side dish hehehe. I cooked rendang and ayam on monday afternoon, my sister came to prepare kuah laksa on the same day. I cooked lontong before subuh prayer on the raya day, so that I could bring some for the nurses at the dialysis center. They were surprised that I managed to cook so early, because after subuh I was already there waiting for hubby to complete dialysis. The reason for the early start was because the staffs wanted to celebrate raya at home earlier, rather than go home at 10pm, they hoped to finish work at around 4 or 5 pm.

Pssst: I am tired of typing using the samsung galaxy tab. So I will continue later.

August 20, 2011

Menopause - On Pause

I couldn't quite remember when I had my period last. Probably last March or April. It stopped most probably due to the high stress level I was in when hubby was in the hospital. When it didn't appear in May, June and July I thought that it might as well be so. I am menopaused at last.. Anyway, I am already 53 year old this year. I couldn't wait to fast for the whole month this Ramadhan.

But think again... It appeared again right in the middle of Ramadhan. My full month fasting plan for this Ramadhan, is now short of 7 days. Too bad!!!!! Ah well, it may just prove that my menopause is now on pause.

My younger sister who is 50 years old this year was telling me that she she had not had her period for a few month also, but recently she went to the clinic and the doctor gave her medication and she menstruated after that.

My older sister I heard menopause at the age of 52. She is now 55. So I guessed looking at the family history, I should be what the medical term would described as peri-menopause. A stage when your period would not be as regular as before, prior to full fledged menopause.

Luckily for me, I don't really have the kind of symptom that I heard about when menopause is looming. I do experience some hot flashes, but could it be because of the hot weather now?

Maybe it just to show that I am probably still very healthy and "awet muda" hehehe


August 05, 2011

kidney failure - fasting experience

This year is the first year, hubby is fasting as a kidney patient. We heard a few views about the hukum of fasting during dialysis. Some say can while some say cannot. But we are taking the view that it is dharurat and dialysis is a must. A person can die if he or she does not undergo dialysis several times.

On the first day of dialysis which fell on the 2nd day of Ramadhan, hubby get himself prepared with a drink in a flask. Just in case he had difficulties during dialysis. Alhamdulillah, he was OK and still continuing fasting until today. There are a few other patients who are not able to fast. One of the ladies Kak Ana, said that she was feeling nauseating when she tried fasting on the first day. I remembered that she was looking weak and pale on the 2nd day of Ramadhan. The others like Cikgu Rahman, En. Hashim are doing OK fasting while undergoing dialysis.

Since his dialysis time is in the afternoon, starting around 3.00 pm, the breaking of fast is normally while he is still in the process of dialysis. He will eat a little, kurma or some kueh. Then, he will have a heavier meal when we get home. His current regret is not being able to go to the Pasar Ramadhan. I prefer for him not to go since he usually will over spent when he went to the Pasar Ramadhan. Anyhow, it would tire him easily walking in the hot sun from one gerai to another. I tried to get something he like at the pasar Ramadhan or cook it myself. It is healthier if it is cooked at home, I can control the ingredients such as salt, sugar, MSG and etc. But, in doing so, the food taste a little bland and hubby does not like it that much.

As for me, dialysis days breaking of fast is also at the hospital. I usually send him to the hospital at 2.30pm, perform my zuhur prayer, then I will buy food at the pasar ramadhan near by. Then I will head home first, because, ayin, syia, my mother and the bibik will need food to eat for breaking of fast. After asar prayer around 6.15 pm, sometimes earlier, I will be driving back to the hospital. After placing the food for hubby, I will either chat with the other patients or will get ready for breaking of fast myself. So the food will be in 2 portions, one for hubby, one for me. I usually will have to break the fast all by myself, alone. If I can see some cleaners sitting outside the dialysis center I will join them, otherwise it is all by myself at the surau or the waiting lounge outside the dialysis center. At times, the emotion of having to break the fast all alone engulfed me, filling my eyes with tears. However, thinking back, Alhamdullillah I am able to perform my duties as Allah's servant and wife.

Reflecting on the current condition, hubby and I will be spending half of our lives in the hospitals. For how long, I have no idea, maybe when the girls are all working and married, my duties to send and fetch hubby to the hospitals can be taken by one or all of them in turn. It all depends on who will be working and living near us later.

Today is already the 10th day of Ramadhan, I hope that the quality of fasting has increased. My prayers are with all kidney patients out there, InsyaAllah, may you be able to fast this Ramadhan.

July 23, 2011

Kidney Failure - Post Dialysis Story

Pheww, how time flies. It has been very busy months since my last update. Even right now, I am trying to update this blog from KPJ. This would probably the only free time frame that I have for myself. So when I send him for dialysis, I will be sitting in the cafe of KPJ Hospital, going online. That is if I have nothing else planned for the afternoon.

Post dialysis.

1. My husband lost 20kg of weight. This is all within 1 month time frame. This is not fat loss, because no muscles being built up from the lost. The loss was fluid loss. During dialysis water will be extracted from the blood and filtered out. Before he started dialysis, hubby weighed 86 kg. Now he is stabilizing between 68 to 70 kg. You should see his pants, hehehe, it would drop off (like you see the contestants of the Biggest Losers would do) if they are not tied up properly with the belt. Now his clothes seem like oversized for him. I have been asking him to go to the tailor but he still has not said yes.

2. The fluid retention in his body before dialysis had caused his legs to be swollen. So now the legs are now so skinny, you can see his bones. The fluid retention had also caused his lungs to be filled with water. He was wheezing and coughing prior dialysis. He was also easily tired when he walked a few steps to get to his office or from the porch to enter our house. I had to push him on a wheel chair whenever we visited the doctor for a check-up.

Now the wheezing and coughing have stopped. He does not need a wheelchair anymore. He walked much faster now without me following behind carrying his bag to the office.

3. His blood pressure and blood glucose level are also under control. Although he still has to take medication for them but, sometimes he can skipped it when they seem to be on the lower side. BP 130 -140 is good, glucose level 5 - 7 are normal. Now he takes some sweet kuih like the kuih kusui, kuih lapis etc, he also asked for a slightly sweetened nescafe O or tea.

4. Many food that we have to be careful off. If you listened to the doctor and nurses, you may not be able to eat anything. Seriously, no joke. There is Pottasium, Phospates, water/fluid, cholestrol, that you need to be careful or control the in take. But the doctor told me to be extra careful in consuming food with high Pottasium level. Because Pottasium can cause heart attack. So, bananas, starfruits, spinach, potatoes, tubers and dried fruits (e.g kurma) are absolute no or can be taken in a very small amount.
High Phospates can cause your bones to be brittle. So you need to reduce the intake so that you can prevent your bones to be broken if you fall. Unfortunately, diary products like milk, cheese etc are high in phospates. Kidney failure patient need to take a special milk for their need. They also need to take calcium carbonate with their food to bind the phosphate and prevent it from getting absorbed into their blood.

Other food that he has to "pantang" - Santan, pulut, salty/ or high sodium foodstuffs, high fluid fruits like watermelon.

I know I sound like a doctor, but that is the facts of life for the person undergoing dialysis. As for me I need to always read the labels to make sure they are safe. But, in Malaysia, most of these ingredients are not listed in our food label. Because they are not required to be listed. It is easy to buy packed overseas food because you can see Pottasium as a listed ingredient.

Next time I will write about other people's experiences and the caregiver story.

Meanwhile, Ramadhan is near, to all my readers

I wish you all, the BLESSING OF RAMADHAN


May 02, 2011

Kidney Failure - My Husband's Story 3

Sorry lambat sikit update. Been very busy driving around hospitals. My life recently is revolved around 3 hospitals. Will continue soon.

This is what I posted at facebook.

My husband hospital episod

by Normah Hassan on Friday, April 8, 2011 at 10:12am

It started with a simple case of inserting an IJC for haemodialysis when he was first warded. Then a few days after he was discharged, he had to be re-admitted due to infection. Spent 2 nights in ICU because he was coughing blood. Then when the IJC was re-inserted he was bleeding the whole night non stop. So the IJC need to be pulled out again. The neck was swollen rather bad, so the catheters had to be inserted at his groin now for a week.

Due to the bleeding, the dialysis was only done for 40 mins, vs the normal 4 hours last monday. The doctor decided to do the insertion to the groin only last friday. So it was almost 4 days since he was dialysed. Because of that his urea increased and we was vormitting very badly and feeling dizzy. He was dialysed on the bed.

He is still under observation, and so far but stable now. We have been recommended to go to KPJ on Monday for another procedure. I can't remember what is the medical term for it. But according to the nephrologist here it has a lower risk of infection than the common IJC. Next he need to do the permanent fiscular on his arm for dialysis.

Dialysis is for life, 3 times a week at 4 hour every session. Once a person get use to it then, they are almost as healthy as another person.

Moral of the story is TAKE CARE OF YOUR GOD GIVEN ORGANS. Go for a regular checkup and lead a healthy life. Poor health is expansive.

April 22, 2011

Kidney Failure - My Husband's Story 2

Although we knew in our hearts that eventually my hubby would need to do dialysis, we tried to avoid it. He was in denial, he thought that my taking medication his kidneys would eventually get back to normal. Of course it would not be true, when an organ in your body is damaged, it would only be Allah's power that can turn it back to normal. Divine intervention so to speak. Medication sometimes can help to reduce or prolong the damage.

In case of kidney failure, there is no symptom for you to know that your kidneys have failed. Tak ada kaitan nya kalau kita sakit pinggang dengan kerosakan buah pinggang. I have also learnt along the way that although we have 2 kidneys, only one is active, while the other is on a standby. In case of the active kidney failed in it's function, the other would be working as normal. For damaged kidney patients, it would mean that both kidneys are not functional anymore.

In hubby's case, physical symptoms were, his swollen legs and feet. They got bigger and heavier each day. His weight keep on increasing even though we have been controlling his diet. Blood pressure were always on the high end, his blood sugar level is already normal i.e between 5 - 7 mmol/L. The blood sugar level was normal because, the medication is accumulated in the kidney, since the kidney is no longer able to process them to discharge them through urine. His urine is getting lesser and lesser too.

Since the kidneys are no longer functioning, with the presence of fluids in the body not discharged out, the pressure on the other organs are also increasing, this is causing the blood pressure to increase. As the fluid in the body keep on increasing, my hubby was coughing and wheezing almost non stop, his chest was full of phlegm. For the past one year, I think, we became the largest consumer of tissue papers.

During the monthly visit to the hospital, his blood was taken for testing. Progressively, blood urea level and creatinine level in his blood had also increased. Starting with around Creatinine 200+ mmol/L in April 2010 to 700+ in March 2011. Urea level in March 2011 was 24. (I will put down the spec for normal people later). No way he could survive without dialysis, if we prolong it, he would have complications, may even be in a coma or worse.

The Neprologist - Dr Goh, advised him to be warded for dialysis. So on 15 March hubby was warded into Hospital Seberang Jaya for the second time in his life. On the 16 March, the first IJC (Inter Jugular Cathether - I think hehehe) was placed on his neck by Dr Goh. After that they performed blood dialysis on him for the first time.

A kidney patient will need to go through dialysis for the rest of his/her lives 3 times a week and at 4 hours per session. Cost wise, each session cost between RM150 to RM200. If you can get yourself listed to the government hospital (a long waiting list), then nit is free. Otherwise be prepared to spend around RM3000 per month (inclusive of medication). If you don't do dialysis, either after you have started it, death can prevail since your toxin level (urea and creatinine) will increase and eventually overwhelmed your whole body functions.

After the first session, hubby's condition improved a lot. The swollen on the feet seemed to have shrunk a bit, he was not coughing so badly anymore, the amount of phlegm was reduced too.

To be continued...

Spec for normal kidney function - blood test result (the only way to know)

Creatinine 51 - 124 mmol/L (millimol per liter of blood)
Urea 2.0 - 6.8 mmol/L

April 14, 2011

Kidney Failure - My Husband Story 1

It has been 4 years since I have left the employment. Berhenti kerja lah tu. Tahun pertama tu aku tercari-cari jugak apa bisnes nak buat. Bermacam-macam kursus keusahawanan aku join. Macam-macam program aku fikir nak join. Tapi akhirnya tak menjadi pun.

Actually, I was getting a bit depressed as well. My husband was getting stressed out by the fact that I was staying at home without any income coming in. We used to enjoy 5 figures salaries between the 2 of us and now it was reduced to a around 40% of the total income. The girls are getting into the universities and everything would rest on his shoulders. I was using the excused that I have no one to take care of my mother who was getting more and more dependent on me. I couldn't get out of the house without worrying that she would fall and hurt herself. She is almost bedridden and has the tendency to stay awake at night and sleep through the day. She really need someone to look after her day and night.

At the end of 2009 I finally made up my mind, I had to go out to be earning an income before I "kill" my husband or ruin my marriage. I told my sibling that either we hire a maid to take care of my mother or someone else had to take care of her.

The maid finally arrived on 4 April 2010. It was Ayin's birthday. It was at subuh prayer time on 16th April, at the time when Syia wanted to go to school that we noticed my husband had fainted. I remember that he woke me up at around 5 am. when wanted to go to the toilet. We went back to sleep and at 6.30 am that we found him fainted. I panicked, called his cousin Dr Zainab for advice and with the help of Abang Lang (who arrived the evening before, Alhamdulillah) Ayin, we rushed him to the hospital. He was diagnosed with hypoglycemia. His sugar level was 1.8 which was far too low. For a diabetic, hypoglycemia is much more dangerous than a hyperglycemia. If we had delayed a few more minutes he would have had a stroke or even die.

Prior to that attack, hubby had been complaining that his eye-sight were not good. He wanted to make new specs, but he was adviced to see the eye specialist before he should make new glasses. His eyes could not focus well, and it would be a waste of money to make glasses which he would not be able to use. The specialist found sugar deposits on his eye nerves which is common for diabetic. Hubby was asked to control his sugar level.

My hubby was so paranoid about the increase in his sugar level that he dared not eat anything. On the evening prior to his hypo attack, he could hardly walk because he had not eaten enough. All he would eat was rice and soup. He was so weak, he could barely walk without holding to me. I had started to drive him to work because of his tiredness.

Since then we have been going for monthly regular check-up. After a year, we are told that my husband has kidney failure.

Note :
Hypoglycemia is low blood sugar level below 4.
Hyperglycemia is high blood sugar level.
The normal person reading would be around 5 to 7.

Disclaimer :

This is going to be a personal journal on my husband's strive as a kidney patient. My intention to blog this is not to gain symphathy from anyone. It is more of documenting the journey that we have to go through from the eyes of the care giver and the patient himself. Maybe something good may come out of this but at least it would remind me to be thankful to Allah.

April 09, 2011

Dari Kamar Hospital Seberang Jaya

No, NO!! I am not sick... Alhamdulillah.... pssst Not really true, I have a slight cold. Not that it would be enough to get warded anyway.

No, I am not working here as well.

But I have been sleeping in this room for more more than 2 weeks.

It is my hubby who is warded here. He has been diagnosed with kidney failure.

He was here at first was to start the Heamodialysis treatment, but the IJC ( the catheter placed for the procedure) was septic or infected by bacteria. He need to be re-admitted to make sure that the infection does not affect his other vital organs.

The story on my hubby would come later.. I promise.

This entry is more about me first..

I thought that my addiction to blogging has been long cured. Looks like I was wrong. In fact I missed it a lot. At times, my mind felt like it was going to explode because, I have many things that I want to blog about but somehow I couldn't do it. Reasons... there are a few, but they may seem trivial and lame at this moment.

Thanks to the technology, you can blog from anywhere right?.

At the beginning of his stay here, I was anxious about hubby's well being, so my mind was focussed on his health. But after he is already stabilised, I was getting very bored. The doctor won't discharge him yet, not until his infection is gone anyway, therefore my mind is left to wonder aimlessly. Thank God Ayin is back from college and I could borrow her laptop and the broadband.

So last night, I wandered through the blogging world to see who is still around. Many have moved to facebook and twitter but there are still a few of my old blogging friends who are still active. Phew!!!. Lega...

I am trying to make a comeback. Not so much to find popularity or what so ever, but there are things that I want to pen down like my hubby's hospital episode, his reaction to ill-health and the caregiver point of view. One day my daughters may need to refer if they have to care for someone they love, just like me. This can be their reference point.

My english is I think dah berterabur...... semua pitching ke laut habis.

It has been 4 years since I left employment and it becomes rather rare that I speak in proper english. So please bear with me.

Untill next time