More Learnings

I have now a clearer head to work on my adjustment to the hospital.

If a patient wants to be happy in the ward, she must build community relations with the doctors and the nurses. Give something thoughtful to a grouchy nurse, she might treat you better next time.

I am learning more about my body so that I can help myself in times of crisis. For eg, the human albumin drips got to be about 25 drips per minute, otherwise my vein hurts. Knowing which vein gets hurt easily and letting nurses know that they shouldn’t be poking on those veins is another way to avoid more unnecessary pains.

Sometimes I sneaked out to have lunches outside. The 24 hour food court on the ground floor opposite Menara Utama was the place to go but you must know which stall to go to. The Rm7.90 assam laksa was a rip off  at one of the stands. Don’t try the dishes at Home Food, I paid Rm8 for five spoon of rice, one tiny fried fish, three teaspoon of kangkung and three miserable pieces of tofu.  I asked them to throw their egg sauce away as it was bubbling with bacteria under the heat.

The stall SE Care is much cheaper and the foods are fresher. There are more varieties of vegetables and curried meats. 

I also figure out where the cleaner public toilets are. They are at the payment counter! Don’t try the public toilets in the ward. The new building also has cleaner toilets!!

My daughter said to me, ”You look much better now! Am I getting my mommy back?”

YES!!!!!!

I noticed that her boy friend, GG, has been a reliable carer to her. He has been bringing her to see me at night because she can’t drive. And he waits patiently by the wall as my daughter and I hug and talk. Sometimes, he got sent to get me cold drinks or some snacks for night time. He always obliged. And he checks on her daily, brings her out for dinner every Thursday and stay in the house to keep her company till 10 am. 

And, according to my daughter, he never takes advantage of her…….!! Halelujah!!

By Ching Ching

Things to Bring

A new patient came into the ward. She forgot to bring many essential things for her stay. Her family did what my home carers did when I first came, “We will bring you these the next time we come.”

But they didn’t make a list, I wonder if they could remember all the things they should bring.

Watching her fumbling around and later crying.  She didn’t bring her handphone and was unable to call home. I suddenly got an idea – let me list down things that patients should bring when they are admitted. This will help many people!

So below are my checklists which I compiled when laying on my bed, looking around me.

Things to bring from home:

1. Colored bags – This is to help you to be admitted without stress. For eg, the purple bag is for clothes to change like underwear; the green bag for relaxation such as books, or other things; the black bag is stuff for work, the pink bag contains toiletries.

2. Something that smell good --  The ward could sometimes smell very awful- vomit, shit, urine from your bedmates, or oily foods that their families eat by the beds. Bring baby powder to give yourself nice feeling after you wipe your body, may be even perfume during days when you are depressed. Or sanitizing sprays.

3. Bring black pants – The pants won’t show even if it is dirty and unwashed because your home carers have forgotten about bring laundry home for you.

4. A sweater – The ward can get very cold and you need a sweater when you are waiting for your turn at examination rooms.

5. A neck pillow for reading for browsing internet with your Ipad.

6.Books to read. Books that can take your mind somewhere for a few hours.

7. A bath towel and a face towel.

8. Cash not more than Rm250 and credit card ( if you rather do all the discharge procedures yourself to spare your family from waiting for hours for the discharge.)

9. Body lotion.

10. Toilet paper (One roll at a time because there is not much space).

11. Your favorite teas/coffees/drinks in powder form.

12. Handphone –a must!!

Things you need to buy or buy from the shop on the ground floor:

1. Adult diapers

2. Wet tissue for wiping your body

3. Soap for handwashing

4. Tissue paper ( small packets because you don’t have much space)

5. Snacks – low salt, or low fat low low sugar, whatever you are allowed to eat – For night time when you can’t sleep and in between when you can’t eat the hospital foods.

6. Mint or something to make your mouth smell good.

7. A small bottle of dettol or bacteria-ciadal sanitizer to clean up things around you to protect yourself from bacteria infection. Keep a small bottle in your handbag so you can disinfect someone’s car when you travel in case your fluid wet car seats.  You can clean it up with tissue paper and dettol.

8. Menstrual pads – to use as towels for the drain hole when you travel.

9. Minyak angin  or ‘fung yau’ (Chinese medicated oil for tummy pains).

The most common ‘fung yau’ in Malaysia.

10. Lip gloss for dry lips due to the air-conditioning.

For the mind and telework:

1. An Ipad with internet access

Medical Expert Jotting Down
Case Sheet Notes Stock Photo

2. Books to read

3. Writing pads

4. A clip board with papers so you can jot down notes. 

Things your family should try to bring to you every time they visit:

1. Banana to get your electrolyte balance.

2. Your favorite foods if you don’t have appetite, but make sure the foods follow your diet requirements.

3. Nice notes and greeting cards from friends to cheer you up.

4. Freshly cut fruits to help your bowel movements.

Things your family and friends shouldn’t bring:

1. Flowers – The pollen can give allergy to other patients and you have no space to put them.

2. Very sweet and high fat desserts － Foods with very high sugar and fat don’t help any one especially ascites patients.

By Ching Ching

How Can They?

It appalled me that I have been given the wrong kind of diet again on weekends. The food delivery guy told me he was new and he didn’t know anything, so I had to wait till Monday to correct the mistakes. Instead of high protein low salt I have normal meals. I had to check with the rest of my seven ward mates to see who had my high protein low salt. It was difficult to really determine without tasting every one’s foods. So I had to settle with normal protein and normal salt!

 Excessive salt retains water in my body

I am only allowed 40 gm of salt per day.
It is only about a small spoonful and a half .

The ward was full of visitors, and the toilet was awfully dirty, I had to hold my nose to go in. The shoe prints were sickening. I had to wash the prints off with my bare hands. How can patients not get infections from the hospital?  If the hospital management calculate the amount it spends on antibiotics, the management should be able to see how much the hospital can save by just making sure the cleaning contractor do a good job.

And how can two contractors with multimillion dollar contracts from the government continue the contracts by doing such lousy jobs?

Since no patients dare to write a formal letter to complain, the mistakes and the sting continue. Unabated.

I told the medical consultant for the weekend about the two woes. He said, “What can doctors do? We are powerless!”

All over the world, people want transparency, accountability to public money. Why can’t we have this in Malaysia?

By Ching Ching

The Medical Angels

I am beginning to look forward to 9 am or 10 am when the doctor’s teams come to check on me. Someone would tap on my tummy to listen to the sound, and my files are checked – from blood pressure to temperature. Sometimes they discuss for more than ten minutes if there are any blood analysis, or tests results. If they prescribe something new for me, someone will explain why and how the new treatment works. They even draw pictures for me to understand.

I now know the hierarchy of doctors. One trainee doctor will be assigned to me, and this is the one I have to make all the ‘complains’ to. If this trainee doctor doesn’t give instructions for weekends treatments, then I will find myself having clogged drain tubes for the ascites drain bag or being given medications I don’t need.  This trainee doctor reports to Dr P who is the lead doctor for my case. He, in turn, seeks advice from the other senior doctors in the GI ward.

I like Dr P, not only that he looks intelligent with his glasses, he is fashionable with his hair gels.

Pong is coming to University Hospital for the colon surgery. I must go see the urinary department and build a relationship with the medical team, find out who is the lead doctor and make sure Pong gets the best treatment she can from the hospital, and that no one, nurses or toilet cleaner, will ever treat her rudely again in a hospital.

She deserves the best.

After 26 years.

By Ching Ching

Ascites Fashion

There are six issues you are immediately faced with at home and at work if you are an ascites patient:

1.The water retention grows daily as you eat and drink, so your clothes size changes. They get bigger and bigger till you are being drained, or in medical terms, ‘tapped’.

2.Draining – How is it done? They can also give you a urine bag to ‘drain’ you besides the ascites draining. This urinary bag will receive the flow from the urinary catheter and you have to carry this bag around too.  But you know it is always ‘down there’. And when you sit or sleep, you sit or sleep ON the urinary draining tube.

It is less ’risky’ than the ascites tapping bag. The ascites tapping bag has two blue hooks that allow you to clip the bag onto railings in the toilet and on your bed.   Since the ‘drain hole’ is on one side of the tummy, you fumble around with the tube when you eat, sit, go to toilet or walk around. (See the video I show about where to clip the blue hooks when you are in the toilet in the UM public ward. The railing in each room is different, some are on the right, some are on the left, so you have to remember which hand to hold the hook and which hand to do what.)

3.The unsightly bag – pedestrians will walk away from you in the mall, restaurant patrons in the next tables will ask to be seated elsewhere, proprietors of shops will follow  you thinking that you will accidentally trap the goods displayed with your tube!

One way to be fashionable and not grossing people out: Get an ecobasket from eHomemakers ( see www.justmarketing.info) and put the bag inside the artistic handbag! 

Eco-handbags are perfect
to rest your ascites tapping bag.

4.Punjabi clothes come in handy if you have access to this. The pants are in rubber bands or can be tied with strings, so the waist line is flexible to accommodate your shrinking or expanding tummy. But the colors can be too bright for Chinese patients such as orange, yellow, and purple. So make sure you have many Punjabi friends who are willing to lend you their clothes, otherwise you have to buy these and you might not be wearing them after you get well. Some neighbors may think that you are into Hare Krishnan or a Hindu! 

If the Punjabi top is too small for your tummy or the chest is too tight, then you can only use the pants. Beware of wearing different colored tops with the colorful pants, you can look like a clown when you don’t have enough clothes to wear.  I did look like a clown with my flowering peach background Punjabi pants with small red and orange flowers. The pants are so comfortable that wear them weekly. Several times, my big white blouses or peach blouses didn’t dry in time in the rainy days, so I had to wear colorful tops with the Punjabi pants as my wardrobe was very limited.

Punjabi pants come with elastic top for your
 ever-changing tummy sizes, and the pant legs are baggy.

5.Being discharged with the ‘drain hole’ means ‘managing the water’.  When my tummy was still quite ‘big’, full of water, the peritoneal fluid ( and it smells….) flew constantly out of the tapping hole even though there were stitches. The nurses removed them only seven days after the stitching. So I had to put a towel around my tummy ( that meant I needed Size L T-shirt or Punjabi top), strapped it with a strong under my big blouse or T-shirt, and kept changing the smelly towel when it gets too wet.

When I slept, a big towel had to be placed underneath the body part where the tapping hole was, and I had to wrap a big towel around my tummy so that the water seeped into the towel and not my bed.

And the fluid also drips out of the towel when I sit on the bowl to do my small and big business. So imagine the fumbling around when the string on the towel was too loose and the towel falls. Then I had to hold the towel with one hand while the other one does the right thing!

Once I was waiting in line in a neighborhood shop to pay for a loaf of organic bread, the towel fell off onto the floor. I picked it up and stuff it near the drain hole, but I didn’t do a good job, the fluid started to flow down my thighs onto my feet, forming a small pool of water.  And of course the smell from the fluid is not something an organic shop wants.  I fumbled around trying to find my cash in my handbag while one hand was stuffing the towel under the blouse. 

Luckily, a neighbor was there and she paid for the bread and took me home in her car. The fluid dripped onto the car seat as I was strapping the seat belt. Urrrrrgh, those rushing fluid, they seemed to want to spill out as fast as they could.

6.Creative water prevention – It took my carers and I more than one month at home before we figured out another way to for me to travel and walk around without a bulging towel underneath my blouse. Use highly absorbent night menstrual pads! We taped the wings onto my tummy and use the underwear as a ‘holder’ to keep it in place. 

It kind of worked well with me. I bought many bags of menstrual pads, since I am nearing menopause, there is not much use of them.  Using them for my ascites problem seem right! 

SO what kind of ascites fashion can one derive out of necessity without having to buy a whole new wardrobe? 

You have to have new fashion for:

1. For office

2. Going out in the day time

3. Night functions where every woman wears gowns

4. At home – Big t-shirt 

Having friends who are willing to lend you big t-shirts that match your Punjabi friends’ pants will help a lot. Make sure your friends don’t lend you their teenage boys’ t-shirts with prints of skulls and devils. It can get depressing when you don’t have enough t-shirts to go around. Pregnant friends who had delivered can also lend you some roomy fashionable clothes for night functions especially.

Like me, you may also have to consider borrowing big underwear from your elderly mother, and swear to yourself that you will never laugh at her home made underwear again!

Oh, get used to being naked in your own bed room. With all these hassles of fluid dripping, towels dropping, you can feel quite tired. Spend your weekend in your bedroom, naked, so you don’t have to deal with clothes. Just lay there with the towel or the menstrual pads and enjoy a good book or surf the net. 

By Ching Ching 

My Undying Love

One of the greatest blessings Pong has is her family’s support. Throughout her whole 26 years’ of being a disabled, no one in the family has ever said anything nasty to her. Everyone is supportive and concerned about her. When I met with her last year at the KLGH hospital, she spent the first hour talking to her family. Her father called from the house near the limestone cave.  Eldest sister who works in a shop in Ipoh called her during lunch time, making sure she finishes her lunch as Pong does not have much appetite. A sister who works in another town called.  Her adopted daughter who works in another town called. Her niece phoned after school to promise she will study hard. She told me at night, her eldest brother will call to report that everyone is fine at home and also to find out how she is doing in the hospital.

Such bonds between the family members and her provide her with high desire to get well. Even though the hospital treatments haven’t been up to par, her mental ability to stay alive has been cultivated through strong family support.

Although I live in a middle class home, Pong lives in a shack by the limestone cave, in many ways, Pong has more than me. She has precious undying family bonding that never once leaves her.

 It has been a challenging time for my teenage daughter who had to rush from office to hospital. Some days, she helmed the office with two other interns as she knew our admin operations very well. Since I am a workaholic, inevitably at home, when we were doing other things and the conversation topics went back to the office.

We have had quite a few quarrels these past few weeks. With my big fat tummy on me, there are many household chores I can no longer do and many things I can’t do for myself. Dropping dirty clothes onto the floor and unable to pick them up for the laundry basket, dropping a pen and unable to pick it up, needing help to get up from the bed, needing someone to use a washcloth to wipe my back because I can’t wet the surgery holes with water. All in all, I am functioning, at best, less than 30% of my original agility and speediness in home chores.

“I’m only 18, mom! Look at all the things I have to do for the office and for you. No one has a mom in the hospital and has to remember to bring her this and that weekly. No one has to live alone, clean the house, do the laundry and eat alone most of the days.” She screamed at me one time when I told her I was so disappointed in her for yelling at me.

Life has become intense for both of us. There were days I did yell at the top of my lungs when I was frustrated from not getting the help I needed. The steroids gave mood swings and I was having ten pills per day at the time. “You don’t respect your mother who has given you every thing all these years,” two drop of tears rolled down my cheeks. I was very hurt, “I’ve taken care of you all these years, and now helping me for a few weeks and you are unhappy!”

Then all the old hurts came back, “Ya, you always think your father is fun and I am boring. I have to take care of you during school days and he has the weekend to play with you. So I get the short end of the stick even though I give you my time and care,” I gnarled.

She barked, “Don’t you say that again” she banged the door.

Several times, I laid on the bed with silent tears. It breaks my heart to see someone I love turn against me when I most needed help.

It was her former school councilor who helped me out, “She has a lot to deal with and learn, obviously she is very stressed. She loves you very much. Let her go and have a break, take a few days holidays with her friends and let the stress go away, then she will be fine.”

I reminded myself about the poem, ‘If you love someone, let her go, if she doesn’t come back to you, she never was yours.’

Got to let the kid go.

She drew a booklet at nine year old. Page 1

   Last Page of the booklet.

    Center page of the booklet.

The last two months, between watching her smiling face at my hospital bed and angry grimace at home when I was laying down. Such trying times have also given me opportunity to see clearly that the two of us are different. I can’t mould her to me, she has been brought up by me to choose, to make decision, to speak up and to be free while I was brought up to obey the elders, follow the authority, and not to outshine any one else with my brains. I was supposed to keep quiet and bear with any injustice in my life, and just keep working hard to live my fate out.  But I have groomed her to change things around her with courage and determination.

She is nurtured in the image I dream of. But still, I have to let her be. She will be who she will be, her own woman. And I must accept it.

This realization would not have happened if not because of ASCITES!!!

By Ching Ching

A Live Drama

The ward was very very very noisy with visitors. I hate weekends.

The Indian man who had been moaning and screaming went into coma in the afternoon. His big extended family crowded into his room to wake him up.  Nurses rushed in to give him oxygen. When his mouth frothed, his family screamed at a high pitch as if they just saw the Devil.

Men talking loudly on the handphones. The whole world seemed to be collapsing.

Three hours later, he stopped breathing.  His wife and daughter shrieked at the top of their lungs. Then they ran along the corridor, beating their chests, screaming in Tamil as if devils were every where. They knocked onto walls, kicked the medical trolleys along the way. At one point, it sounded like someone was pounding on the wall of my room and digging her nails into the walls. It seemed like someone else grabbed a sharp object from a medical trolley and started to poke her arms and legs with it. Nurses restrained her and more commotion was heard from the family.

They scenes reminded me of Thaipusam. 

It went on for more than an hour, giving me goose pimples.

I asked one of the friendly nurses about death reactions by the various races. She said, “When Malay patients died, the family read the prayers, cry softly and then leave. Same with the Chinese whether they are Buddish, Taioist or Christians. But the Indians grieve very loudly and yes, it does feel like you are watching people in trance in Thaipusam. This is the cultures in Malaysia!”

Strangely, the ward became quiet after they left. Other visitors didn’t make that much noise. Children were not running around like they do on weekends. Finally, these unruly loud visitors are respecting a family’s grief!

By Ching Ching