Avillion Port Dickson Here We Come!

Alhamdulillah after so many years of wanting and craving to stay at this beautiful chalet-resort in Port Dickson we finally get to stay here this weekend - to celebrate my 35th birthday. heheheh getting older but wiser I hope. I am so looking forward for this stay although only for a night but that's good enough since we're going to Penang Hard Rock Hotel end of this month and to Singapore Universal Studios Festive Hotel (wanted to stay at Hard Rock Hotel but it they're fully booked) and Sheila Majid Performance at the Esplanade in December. Many travel plans are made, maybe inysaAllah we're going to Jakarta on February 15 for another Sheila Majid's concert at the Jakarta Plenary Hall (Trying to get the tickets) and also to Bali (again) Hard Rock Hotel., insyaAllah. We're also planning a trip (kalau cukup duit, Amin) ke Australia's Gold Coast.

For my birthday this year, I am wishing for good health (no more hospital stays please dear Allah), happiness and tranquility (alhamdulillah these are what I'm feeling lately and I'm loving it) and to eb able to be with my loved one forever and ever. Of course for lots of money to pour in so that we can travel more often AND for my book to be published, insyaAllah (yep, I'm trying to write a novel heheheheh). Amin.

A Treat for MYSELF

Hah dah seminggu ni KalEl asik shopping aja. Bolehkatakan hari-hari la ada saja yang dibeli. Kal El kemaruk shopping ni kerana kebosanan agaknya. Bila dapat jalan-jalan dan beli itu ini rasa seronok walaupun boleh dikatakan perilaku ni boros dan membazir. Takpalah sekali sekala nak menggembirakan hati.

Hari ini Kal El ke Parkson di KLCC membeli minyak wangi. Cuba berbagai jenama dan bau-bauan tapi sangkut plak kat Feragamo Black ni. Ada gak Bvulgari yang amat menarik bauan musky woodnya tapi hehehe satu-satu dululah Kal El ya. Ikut hati mati, semuanya pun nak beli.

Sebelum tu Kal El ke Hospital Ampang untuk renal appointment. Dua hari lepas ke tempat sama untuk eye appointment dan semalam pula juga di Hospital Ampang untuk ortho appointment.

Alhamdulillah mata Kal El ok cuma kene pakai reading glasses (yup mcm orang tua), ortho wise kene pi rehab aka physio pada 27 Oktober.Rena pun ok tapi kene buat blood transfusion sebanyak 4 pint masa dialysis nanti sebab hemoglobin agak rendah.

Alhamdulillah semuanya stabil sebab tu lah Kal El happy and treated myself to a bottle of perfume today (alasan!)

A Break Too Long!

This blog was abandoned for nearly three months not because I have given up blogging and sharing my story but because I was hospitalized for that duration - I could have posted some entries but not until today that I feel a little better.

It all started after we came back from Cambodia for our long due vacation (I will eventually post about the trip someday). Remember the permanent catheter that was inserted in January? (Refer here) It somehow got infected and that was how things started. I have had this bacteria called MRSA in me when I had my right leg amputated in 2008 and since I am and ESRF (End stage renal failure) patient and diabetic, my immune system is very low thus making me susceptible to this bacteria - each time I am hospitalized.

I went to Ampang Hospital to get treatment for prolonged fever and backache on February 12, 2010 and was admitted, diagnosed with Pneumonia secondary to MRSA (more article on MRSA here). Spent a week there and had to be transferred to HKL to remove the permanent catheter as that was the point of infection (I may have gotten it when hospitalized for the insertion as I had an open wound then) While in Ampang I had another stroke attack affecting the right side of my body. Alhamdulillah my limbs could now be moved after sessions of physiotherapy.

I was discharged from HKL on march 19, 2010. The doctor there suspected that I have abscess in my lungs and set an appointment for me to see a respiratory specialist the very next week. The bronchoscopy done while I was in HKL showed multiple cavities in the right lungs but the presence of puss couldn't be confirmed. Unfortunately only after 2 days being discharged I had to be sent back to Ampang due to severe SOB (shortness of Breath) and was re admitted on March 22, 2010.

After over a month in Ampang I was advised by the specialist in Ampang to be transferred to PPUM (University Malaya Medical Center) as there are no ID (Infectious Diseases - my case, lower respiratory tract infection secondary to MRSA) specialist in Ampang. So, after more than a month in Ampang, I was transferred to PPUM on April 29, 2010.

While in Ampang, the MRSA bacteria had attacked more parts of the body affecting the left stump (yes if you didn't already know, I have lost my left footie too end of last year - will also write about this some time soon hopefully) The bacteria has also attacked my left index finger besides the lungs (that's the reason why its called disseminated MRSA) resulting to more operations being done to drain the puss from the left stump and removal of my left index finger (yup another amputation!)

On the 6th day in PPUM and after another CT Thorax was done, I undergone another surgery to insert a drainage pipe to remove the puss that has been accumulating in my lungs. It is a really satisfactory experience seeing globs of puss coming out of me and being collected in a urine bag. My breathing becomes better (thus the blog entry) although still oxygen dependent. Hopefully everything will be well soon and the MRSA infected be settled and I could go back to my home sweet home.

Perm Cath vs. IJC

This is how the permanent cathether looks like. At least it's under my clothing not jotting out on my neck like the previous IJC. Hopefully this thing will last for years so that it need not be replaced. It's costly - rm1k at hkl and rm4k at a private hospital. Thank God i am an OKU so it's free for me. Alhamdulillah, syukur nikmat Allah.

Surgery a Success!

Alhamdulillah the permanent cathether insertion was successful. Insyaallah esok boleh rasmikan and hopefully the flow is ok. Of course this is again, temporary (but i do hope it would last years - some say it could last 7 year but that depends on how well i take care of this thing and hopefully no infection la). The doctors pun want me to go back to capd. Tengok la macamana nanti. If i do, another 2 surgery la nampaknya but what the heck, i'm superman. Even the doctor yang buat
insertion tadi pun cakap s i'm tough considering the things that have taken place in my life. Dalam hati Kal El cakap - superman kan… hehehe. Gambar: the dangling thingy near my armpit is the inlet/ outlet for dialysis. The tube was inserted at the previous ijc site tapi tak visible as it goes underneath the skin.

Renungan Manja Sang Superman

Ahaha jangan marahhhhh. Ni la takde keje masa dialysis amik gambar sendiri sambil update blog. Tengok ler tu uniform baru lagi. Terang benderang kaler dia Tadi pagi pi jumpa doctor ortho kat hospital ampang. Alhamdulillah semuanya ok. Esok kene 'check in' hkl kat nephro
ward pulak. Friday nak kene siang macam ikan lagi biat permanent cathether kat dada ganti yang kat leher tu huhuhu. Doakan Kal El selamat ya. InsyaAllah.

I need a vacation ASAP

Hmmm at this moment Kal El rasa i need to go for an immediate vacation. Domestic getaway 2 days 1 night pun cukup, jadik ler dari tskda kan? Just to 'dissapear' from this dull routine of mine of going to the hospital and being in and out of hkl Dah 2 minggu ada long weekend tapi tak pergi mana atau buat apa pun. This weekend and next weekend pun panjang juga. Hmmm nak pi mana ya? Macam teringin la nak pi hard rock hotel kat penang nun or perhaps avillion kat port dickson?

Gambar: tengah dialysis pagi ni. Kat mana? HOSPITAL ampang. Sigh hospital, hospital, hospital! Tak leh ke dialysis kat pavillion ke, kat gsc ke, kat red box ke?

The Superman in me

I've had people asking how could i be so strong after all the mishaps in my life? Some commented that I am still as cheerful as ever. Rahsianya? Hmmm takdela apa sangat rahsianya. Just think positive, go through life one day at a time, never ever rush through things, think of happy things and memories and of course getting plenty of support from loved ones. Mungkin Kal El ada rahsia la jugak - i always believe i am Superman; strong both physically and at heart. Itu je la rahsianya.

Gambar: Kal El in one of my uniforms. Hehehe just imagine la baper banyak baju with Superman emblem yang Kal El ada muahahahah.

Kal El
Sent from my iPhone

HKL ohhhhhh HKL!

Ingat tak Kal El kata nak masukkan perm cath nak ganti IJC yang duk terjuntai kat leher ni. Hmmm penat je puasa on Wednesday depa kata nak buat hari tu jugak sekali tak jadi. Yang bestnye tak jadi tapi tak de sapa yang inform Kal El. Maka Kal El berpuasa la sampai terlajak waktu berbuka. On Thursday dah puasa dan dah diusung ke angio room. Dah pakai gown OT yang sungguh sexy menampakkan bont*t Kal El yang sungguh gebu itu. Tapi bila doctor kat OT asked me to about my medical history, terpaksa postpone lagi the procedure sebab doctor kat ward lupa nak check whether I have had history of asthma ke idak. (Kal El pernah ada bronchial asthma when I was sixteen) so by right, kene cover me with steroids for the procedure. Letih tul. Nasib baik date yang postpone tu dapat sama ngan date Kal El memang kene admit for my right hand angiogram - to be assessed for fistula insertion. Kalau tak masak asik keluar masuk hospital. Kerja pun bila nak masuk balik pun tak tau.

Aduhai HKL oh… HKL!

Short-lived Joy

Ala ingat dah bleh balikkkkk!!! Pagi tadi doctor dah discharge pastu 3 hours later cakap tak jadi pulak sebab esok kene undergo another minor surgery. Nak masukkan permanent catheter or perm cath kat shoulder blade to replace the current IJC yang hodoh terjuntai kat leher ni for hemodialysis. Originally the insertion date was supposed to be in January 2012 tapi the surgeon is scheduled to be away on that date so alih-alih mat salleh kata nak buat esok. Masuk OT lagi! Bukan dah jadi macam lembu korban Kal El ni tapi lebih macam ikan yang kene siang. Potong sana, masuk tiub sini! Frankenstein pun kalah.

Kal El
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Talak Satu

Alhamdulillah the surgery was successful. Maka kini officially Kal El dengan berat hati melafzkan cerai talak satu kepada unit CAPD Hospital Kuala Lumpur. Malangnya jodoh kita tak panjang. InsyaAllah ada jodoh ketemu lagi.

Thank you to the ever helpful and friendly staff at CAPD. I will indeed miss your hospitality.

In the operation theater tadi riuh dengan gelak tawa. I was sedated but not enough to make me sleep. So i was awake the whole time and when asked how the op felt, i said it felt like my tummy was being butchered macam daging korban. That statement had had the whole OT staff burst into laughter termasuk ler yang kene sembelih tu. Tengok tu, kecik je wound dia. Hopefully esok bleh balik.

Adeh next week kene admit lagi sekali. Nak buat angiogram on the right arm for fiatula insertion pulak. The doctors couldn't find a pulse - hmmm dah mati ke aku ni sebenarnya?

Checked-in

Kal El dah check in the ward for tomorrow's tanckoff removal. Minor surgery to remove the tube used for CAPD treatment. Do pray for me ya. Thank you friends.

Kal El
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Hemodialysis Treatment at Ampang Hospital

A rather pleasant news yesterday - syukur alhamdulillah. I am permanently accepted kat Hospital Ampang in Pandan Mewah for hemodialysis. Sebelum ni my status there was 'Transit Patient' atau dengan kata lain MENUMPANG. I am very happy and amat-amat bersyukur pada Allah. Kenapa? What's so special there?

One - it's a hospital. So apa-apa masalah (like sudden drop in blood pressure or Hb (Hemoglobin) level, dorang akan cepat bertiindak compared to other private, non-hospital dialysis centres. this isi because they do not have resident doctors. Nak amik darah pun result berhari-hari baru dapat. Ampang Hospital is a Blood specialist hospital, therefore any blood samples taken in the morning, the results will be out by afternoon the latest.

Kat Hospital Ampang (most of the part) memang macam dalam freezer so kene berbungkus ler macam Eskimo kejap heheheh... ni tengah dialysis la ni.

Two - It's considered near jugak la to Bukit Antarabangsa and it's between home and work. So KN can drop me off on dialysis days and later pick me up (or papa picks me up and send me home)

Three - It's a government hospital. So, with my OKU card from Jabatan Kebajikan Masyarakat, I am entitled to free treatment. Dah tak perlu susah-susah nak apply for socso or any other forms of help. Leceh and takes time. Even if I have to pay it is really cheap - RM13 for hemodialysis treatment - sapa nak kasi lah?

Four - The staff nurses, medical assistants and PPK staff there are very good in their jobs and friendly too. Memang macam satu keluarga yang besar, boleh gurau-gurau, gelak-gelak and they are very sincere in the things they do for patients. Kalau kat dialysis centres lain, from what I have experienced before, tak berapa closely knit.

Five (reason paling best!) - They serve food! Dah la free, dapat meals pulak tu masa tengah dialysis... kekadang mee hoon, nasi goreng, nasi lemak, sandwiches hehehehehe...

While I was waiting for my tankcoff insertion in January I did my dialysis kat Hospital Ampang jugak and now when I return 8 months later, the staff still remember me and they treat me well. Bukan senang nak diterima buat dialysis kat sini sebab waiting listnya amat panjang and they do tight screening and filtering to the well deserved people to be treated here. I am just very lucky because I am considered a CAPD failure case and such cases are transferred to this place for dialysis treatment. Alhamdulillah.

p/s I will be away this coming Monday onwards (hopefully for not very long) for my tankcoff removal surgery. Do pray for me. Thank you.

CAPD Failure - Back to Hemodialysis

My missing from the blogosphere always mean something bad had happened or is happening. Some of my friends (without my knowing) has been constantly monitoring me on Yahoo Messenger, Facebook and whatever means where my activities and movements could be monitored or traced - if I am not online for sometime they will start calling my hand phone and some would send emails to KN asking for my whereabouts and whether I was OK. They are worried if I was not well and these are the bunch of lovely and caring friends I have. Thanks Allah for this little blessings in life. However sometimes I would rather have some privacy and tell KN not to tell anyone I was in the hospital. Sorry guys.

Yes I was away, neglected this blog and again, hospitalised.

Remember I once wrote about getting CAPD (Continuous Ambulatory Peritoneal Dialysis) treatment for my ESRD (End Stage Renal Failure)? After 8 months the treatment failed and I had to return to Hemodialysis - hence the ugly IJC sticking out of my neck (again) and machine dependent once more. I am now back to doing dialysis at a dialysis center 3 times a week and 4 hours each time - what a drag!

This ugly IJC tube is back urggghhh!

What happened?

My peritoneal lining is the kind that is highly absorbent. So I couldn't use the lower strength 1.5 dextrose solution for dialysis and the dwelling time could not be more than 3 - 4 hours. This means I cannot dwell the dialysis solution in my peritoneal lining overnight. If I did, the solution that went in is 2500ml and the solution that comes out the next morning is less - the difference is absorbed and causing fluid overload. The same goes if I am late doing an exchange, for example if I am out for meetings, shopping etc. Using higher dextrose solution (2.5 and 4.25) wasn't good for a diabetic like me as well as the sugar content in my body will be constantly high.

My life depends on this machine

One good thing is that KN is lifted off the burden of carrying the 24 (12 kilo boxes each) every month and my Livvy too I'm sure would be happier! I too would be hospitalised less often (I really hope) because each time my body is overloaded with fluid I would have to be attached to a machine for about 3 days (yes, no moving or walking around, and no going to the toilet too! Ridiculous right?) I just hope this HD (hemodialysis) treatment would do me good. InsyaAllah.

No more heavy burden for KN and Ms. Livvy and no more storage problem for tge 24 boxes every month.

It's That Time of the Month, Again.

Every month my room will be stocked with 24 boxes of peritoneal
dialysis solution collected from HKL. Every time this event takes
place I would feel suffocated as these boxes take up the remaining
available space in my little room and I would wish that it's the end of the
month as the solutions would all be used up but if it's so, it's time to stock up again…

What to do, I've got to continue doing this in order to go on living. I only have KN to thank for helping me carry these boxes every time it's that time of the month.

Sent from my iPhone

Advisory for H1N1 (For Caregivers & Contacts)

Click the images for larger version.
Copyright of Ministry of Health, Singapore.

p/s Number to call for Malaysia is 999

isk,.. Nak DEMAM ke ni?

Lain macam je rasa badan ni... seram sejuk tetiba. On air cond salah, kipas on pun salah, bila off kan panas plak. Malam tadi dah selsema. Dah rasa nak batuk pun iye jugak. Aisehhhh... Last week KN demam, along pun selsema last weekend and dekat ngan aku gak... Arif pun demam gak last week... aisehhhhh lagi sekali...

Kal El tak suka kalau sakit ni sebab susah nak baik. Ye la dalam condition Kal El sekarang ni memang prone to be infectes dengan apa pun penyakit yang orang lain kena... immune system memang sangat rendah but what can I do la? Takkan nak mengunci diri dalam bilik? I have to work. Kene pakai facial mask ke? Gulp! Rimas ler... pakai 4 kali sehari masa dialysis pun rasa macam nak pitam dah.

Jangan la kene sakit Ya Allah.... jauhkan lah Kal El dari H1N1... jauhkan lah juga walau dari demam biasa sekali pun Ya Tuhan. Batuk pun Kal El tak mo. Bila Kal El baca berita pasal dah 26 orang Malaysia dah meninggal pasal H1N1 as of yesterday Kal El rasa gerun sebab yang meninggal tu semuanya berpenyakit kronik macam Kal El. Bukan takut mati sebab mati tu akan tiba juga satu masa nanti cuma Kal El tak sanggup nak menanggung sakit lagi...

I hate my W.E.E.K.E.N.D.S

NOT!

It's nearly 7 years - this October it would be and I just can't wait for us to grow old together. I am happy. I am absolutely happy. NO doubt in any relationship there would be some glitches but I think we have always managed to solve any problems that came passing by. They are just problems that could be solved if we both put our hearts into it.

It's nearly seven years too that I've spent 99.98% of my weekends alone. I used to go back to Melawati to spend time with my side of the family but ever since I started dialysis I seldom go home. I'd be at my dad's house for about 4 - 5 hours on Saturdays or Sundays then I'm back home doing an exchange.

Well, I am not complaining (but I am) I have long accepted my life now as it is. I know I am strong like nobody could and would imagine I am. I am pretty sure that Mummy would be very impressed if she was still alive at how strong her son really is. Yes, on the outside. I am strong on the outside but only God knows what goes on the inside. I live my life by the day and never look too far ahead and never anymore hope for things that I am not sure of getting. But there's something I really want and I'm sure I want it bad.

I want a weekend like anybody else. A weekend spent with his loved one. Do things together but that has remained a dream that I have kept all to myself ever since it all started 7 years ago. How could I ever be so selfish and want it to be our weekend when my dear has to be with the other side of the family. Settle things that need settling and spending time with the parents (I truly hope) and childhood friends.

But deep inside me I want to go places on weekends, cook for two or at least wake up late together on a Sunday afternoon - things that I have been deprived of the last 7 years. I just do not know the pleasures of a weekend. I am plain weekend bored and lonely and I don't think I can take it anymore...what should I do?

I N.E.E.D

Right now, i really and badly need a HOBBY! I am just easily bored tapi tak tau nak buat apa. Ever since I lost my leg and have to go on dialysis 4 times a day I have become so malas tapi cepat betul bosan.

I need a hobby especially on weekends, something that could distract me from feeling lonely tapi Kal El tak nak a hobby that needs to use money - bukan kedekut tapi if a hobby takes up some portion from my income and later on stresses me up, I don't really call that a hobby. Lagipun I have better needs to use my money for medical supplies and what nots related to being sick - costly I tell you gaji juta-juta pun takkan cukup!

I wanna do something yang, well, not totally free and not too expensive either, suitable for a handicapped like me. Also suitable for someone who has to have a clean and sterile place for dialysis every five to six hourly. Hmmmm apa ek, oh yes, and something that does not confine me within these four walls that I call my home - cerewet tapi that's what I need right now - to go out!

Not that I hate being at home but I have stayed home too much lately and I want to see the world and enjoy my life like I used to. I miss those days when I was free to do and go wherever I want. Now that I have Ms. Livvy I think I am a step closer to being 'free' tapi do not know what I want to do exactly.

I wish that I can have my dearest on weekends but that is just impossible. I am not sure whether my dearest really spend time with the family or with friends or god knows who but it is impossible to get this love of my life to be here on weekends with me. Simply couldn't or refuse to, I just don't know. Worse still, lately my dearest returns home very late on Sundays - the more reason why I need to get out and enjoy myself, alone.

Movies? Maybe not. I have been watching too much movies and sitcoms ever since I got sick - imagine watching 4 - 5 movies every weekend? Boleh muntah lor sampai nak tulis review dalam ni pun dah tak lalu. Furthermore I rather go to the movies with my better half.

So, whoever is reading this and if you think you know me, or even if you do not personally know me, if you know what I like, maybe what I used to like doing (banyak dah hilang ingatan sekarang ni) please, suggest me a hobby. I thank you if you do. I really need a hobby real soon for my sanity.

Ms Livvy and Me

My Grand Livina arrived on Saturday sharp at noon - the delivery was superbly fast - very impressed with this Sales Assistant, David (the same guy who sold Roy his GL) - my loan was approved within a day and the delivery the week after!


I love the car, indeed love it so much - the fact that I now have two cars to maintain scares me though - but what the heck, one is for KN to use and this one, I need it to transport the PD solution from HKL and what's most important is so that I will be able to drive again! What's better is that both Mr. Kellu (My first car) and Ms. Livvy here share the same number - WKT 1048 and WST 1048!


Well, that's what I've done - I've driven for the first time in more than a year! Takutttt sangat especially when I have to drive using my left foot and while my right prosthethic is detached - susah nak drive with a feeling-less leg getting into the way. Tapi ok la boleh la slow2 heheh dah tak gang ho macam dulu la... kene la bersopan santun driving sekarang ni. So therefore, I have decided that I do not need the modification done after all... yey jimat RM3k!



This morning, Ms. Livvy telah menjalankan tugasnya yang pertama mengangkut kotak-kotak PD solution untuk dialysis Kal El. Sebanyak 24 kotak seberat 12.5 kilo sekotak telah diangkut dengan jayanya oleh Ms. Livvy heheheh. This will be her once a month routine.


Kal El: Hopes for the best - mampu bekerja dan bayo hutang ahahahah...