It's been almost 6 years since I updated this blog. I took a break to handle my health issues as I undergone 8 more surgeries as my body's organs started to fail after my heart failure in June 2012. (I gotten a severe bacterial viral infection for helping my boss, to prepare a stingray he caught from Indonesia water, for my teachers & students' BBQ party during the school overnight camp.) I'm lucky that the doctors managed to save me in time. But my left side of the heart has been enlarged as the muscles weakened by the viral infection, plus the body system started shutting down my vital organs slowly. Life is never the same again. 😟
I had 3 eyes surgeries, both eyes for acute cataracts in 2015 due to the toxins in my blood from that viral infection... then the blood vessel in the left eye burst and I have to stop work as a preschool principal completely. The doctors took out the jelly of the eye, and inserted gas in June 2016. I was temporarily blinded for 6 months in the left eye. I can't see in bright light, nor can my eyes adjust to different lightings within seconds now. I need to wear sunglasses in the bright sunlight or rooms with bright lights. I will have vertigo whenever there's changes in the light source around me. 😓
My every half yearly checkup at SGH.
Then as I have many medications to take after heart failure, the side effects made me ballooned. My weight went up to 116kg, extra 30kg within 2 years as water and toxins build up inside my body. I became breathless, unable to walk. I then asked the doctors to refer me to a gastric bypass doctor. Despite my high risk, I undergone a gastric sleeved surgery in 2018 to cut off 80-90% of my stomach. (4th surgery) It helped me to lose weight. Now I barely eat and that helped to save on meal expenses for myself at home too. I do home cooking most of the time. But I need to stay away from fire source, or the heat will make me dizzy. I had fainted few times in the kitchen and lost consciousness and experienced loss of bowel controls as well. 😱
My weight loss journey... still continuing...
But last year in Aug 2020, my kidneys function have fallen to only 9% as informed by my renal medical team. So I undergone another surgery to insert a catheter for water dialysis. (5th surgery)
It was a big mistake.
I was not told that there are sugar inside the water dialysis solution. The sugar made me sick. I was having nonstop infections of the abdominal lining (peritonitis) from day 1 of water dialysis training. I had to come back every 3 days to SGH to get my IV antibiotics injected into my body. The sugar also made my exit wound unable to heal. I was so sick all the time from Sept 2020 to Feb 2021. I was in and out of SGH, warded for more than 2 weeks each time. 😷
Finally in Feb 2021, I went back to SGH for emergency admission to take out the infected catheter from my tummy. (6th surgery) And then did another surgery to convert to blood dialysis. (7th surgery) I also remove an abscess with pus growing on my skin due to the sugar creating havoc on my immunity too. (8 surgeries in total so far.) The renal team put a temporary permcath from my neck in to my chest out. Now I need to go out to the private dialysis centre on every alternate days to do the blood dialysis sessions. 😖
The 19cm permcath inside my chest
18th May 2021 ~
Went for AV fistula for my arm (Further Dialysis requirement)
14th July 2021 -
Did 4 ballooning for my artery as it was deemed not matured enough.
After that removed stitches few days later.
As I need to go out for my dialysis sessions nowadays, I will have to venture out of my non lift level floor on the #07, to the corridors either on floor #06 or #08, the corridors are cluttered with neighbours' potted plants, shoe racks, cabinets, laundry stand, etc. So I took a video of my struggles and it went viral.
The new MP Mr Ang Wei Neng was nice, He came to visit me and asked me to consider moving house. I understood his kind intention, to solve my problem once and for all. But I really do not wish to move. He also wrote in to the Town Council to help clear the cluttered corridors for me. So I thanked him with some pastries I made for the cleared corridors. 😀
The Town Council asst manager also told me to consider to move house too. I know he meant well. But really, it's not my intention to think of moving. But now the HDB manager is coming to see me to talk about moving to a lift access home. But what about the CPF problem?! We're not 55 years yet need to put aside the after sale money into the CPF retirement due to we are already have early payout on medical grounds.
Honestly, I am too ill to think of moving house at this time. I still have another two high risk renal surgeries in less than 5 months' time to remove the permcath on my chest (9th surgery)... and insert an AV fistula in my arm for permanent blood dialysis for life (10th surgery). My heart is only functioning at 40%. I might not make it out alive under another dangerous general anesthesia procedures. Sigh... 😭
All I wanted at the beginning is just to get an electric wheelchair to go to the dialysis centre on my own. I can't depend on my mentally ill husband who is also getting old too. I also need to think of saving on the transportation expenses that is already eating into our very limited rental income. That should be my priority now!
The Independent Sg reporter and team also came in to do an exclusive interview on my need about getting the electric wheelchair's on this youtube video . You can see how I move from level 7 to other lift access levels all these past 6 years since I'm on a wheelchair. I am not asking for much, just help me in my mobility while there's no lift on my 7th floor. 😬
But till today at 11th April 2021, the Town Council still did not give approval to the electric point outside my #06 level Malay neighbour's unit. (The kind hearted Malay neighbours have given me permission a month ago to park outside their house after hearing my side of the story. They can understand as their home has someone in wheelchair too.)
My #06 floor parking allowed by my neighbours
My newly arrived 44kg electric wheelchair
from SGH on 7th April 2021
But the Town Council said only allowed me to park if there's no obstruction. But no charging in common area is allowed due to SDCF's ruling. I wrote in to SCDF, the reply was telling me to refer back to Town Council. I understood this is their SOP. But can I ask to consider on a case by case basis? Is that too much to ask for? I'm not getting the electric wheelchair for fun, I just want to go out for my dialysis sessions on my own, without depending on others all the time. Am I wrong to desire to be self reliant? 😕
Come on, why do all these to a terminally ill dying person? I'm into my 9th year of heart failure and now into end stage kidney failure. Can't just leave me in peace and let me stay in my current flat? Why keep asking me to move out just because there is no lift on my floor level and they don't let me charged my electric wheelchair outside the common corridor on lift access floor? I was forced to apply for medical escort service to bring me out for my dialysis sessions in future with my manual wheelchair. I can't even use the new electric wheelchair as it's too heavy to carry up and down the staircases. 😟
About moving house... Do you think I still have strength to pack and unpack a whole house... move to a new place... teaching my mentally ill husband how to recognize new routes again? The stallholders and shopkeepers all know his condition. Sometimes he forget to bring money, they will tell him to pay later. I've build a supportive network to care for him in my absence. His mental capability has deteriorated so much that he sometimes forget me, leaving me in the mall while he went home. Why forced us to move? Once I'm dead, my husband will go to a mental facility as he can't take care of himself (already arranged with my social worker). The house will be taken back by the HDB as we are childless too. 😳
I have went to see MP Desmond Lee, and even MP Lawrence Wong last year, hoping they can help me with the HDB issues. But they can't break the rules for me. Now I am only hoping Netizens will help me. I am at my wit's end. I still have over $138K in outstanding, as the interest rolled over the 9 years I have been so ill and the HDB did not let me downgraded earlier when I did everything they told me to do. Now if being forced to sell my flat, I will be left without a shelter as my money after selling the HDB will go into retirement CPF. 😥
Update on my part 2 video:
Will you consider in donating to my case to help me keep my current flat so I can have a shelter over my head? Even $1 is helpful too. Please pass my story along. You can donate to my MAYBANK ACCT: 14070671738 or direct credit to my HDB Reference No. 8339-0053-0-49. Or PayNow to 87209368. You can even use PAYPAL to: cocoanna1368@gmail.com for oversea viewers. I will come up with an open list of the donors and weekly payment to HDB on every Monday transactions.
I will also be starting a Spicy Pastries Fund Raising Project from May to raise funds to pay my HDB. More details will be coming up. Please watch this blog for further update.
I can only take in pre-orders for Mon, Wed, Fri and Sun as I need to go for dialysis sessions on other days. For bigger order with mixed flavours can be arranged by discussion. The pastries are hand made using Australian imported puff pastry sheet, fresh local vegetable produces and Halal certified meat products.
Baked fresh plus delivered on same day of production. There are 3 levels of spiciness to choose from. (Sweet- No chili padi / Sexy - Little bit of chili padi/ Shiok - Mouthful of chili padi). Kindly keep in the fridge not more than 2-3 days for consumption. 😋
For those who wish to see proof of my housing issues in order to assist me... you may contact me at whatapp 87209368 or email me at cocoanna1368@gmail.com . Thank you for all your kind support and help in advance. Please share my blog to your network. Every bit of help goes a long way. 🙏
Very thankful to The Royal Singapore social media company for doing another video for us. Life of a dialysis patient on youtube.
