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Organ Donation-The Gift of Life
Hospital Raja Permaisuri Bainun
          12 July 2012




         Lee Chen Hoe
  Deceased Organ Donor Recipient
      Kuala Lumpur Hospital
           27 July 1996
                                   1
Organ Donation- The Gift of Life
1.      Pre Kidneys Failure
     a. School Days
     b. Working/USM -Off Campus Course
     c. Settling Down with a Family
2.      Managing My Kidneys Failure
     a. What are the Options
     b. Coping with CAPD
     c. Preparation for Transplant Operation
3.      Post Kidney Transplantation
     a. Further Studies
     b. Family /Vacations
     c. Green Ribbon Support Association
     d. Organ Donation Awareness Campaign
     e. World Transplant Games
     f.    Financial work out


                                               2
Pre-Kidneys Failure




Less than One Year old


                                            With my father




                                         My mother


                                                             3
Standard One Form Teacher
    Madam Lai Moy Fong
                             The Sportsman of the Year 1970   4
一年级 (1965)-赖梅芳启蒙老师
                                   (75, 100 and 200m)
Sekolah Menengah Tuanku Abdul Rahman, Batu Arang




                                     Headmaster Mr.
                                     K S Singam




                                                        5

All Round Student of the Year 1974
SMJK (I) Rawang -1975 & 1976




                 Six A Side Inter House
                 Hockey -1976
                 I scored the winning goal
                 during penalty




                                       6
Daily, I woke up at 4:30 am and walked 1 km to the bus station to take the 5:30
am bus to Kuala Lumpur located 60 km away from Batu Arang. Reached KL
at 7:00 am and walked about 1 km from Jalan Tuanku Abdul Rahman to 7
attend school in St. John's Institution, Bukit Nenas
Getting Through HSC Was The First Watershed in My Life

                                I am greatly indebted
                                to my classmate Ir.
                                Siva Kumar and his
                                loving mother
                                Madam Vijaya
                                Letchumi who
                                permitted me to stay
                                with them in Bangsar
                                Park, KL for three
                                months while in
                                preparation for my
                                HSC Examination
   Deepavali-5 Nov 2010         (1978)              8
Tenaga Kimia Sdn Bhd
                   A Commercial Explosives Manufacturing
                                Company
                        (16 Dec 1978 – 30 Sept 2000)




Universiti Sains
   Malaysia
  1981-1986


                                                       9
27 July 1986




       B. Sc (Hons) Chemistry
       Universiti Sains Malaysia




                             10
My loving twin girls




                       11
12
My loving twin girls




                       13
14
15
2. Managing of Kidneys Failure-
              what are the symptoms

•   Swollen ankles or       •   Shortness of breath
    corner of the eyes in   •   Difficulty in getting
    the morning                 to sleep
•   Weight Loss             •   Chill
•   Nausea                  •   Bad taste in mouth
•   Loss of appetite        •   Forgetfulness
•   Muscle cramp            •   Decrease in urine
•   Itching                     output
•   Skin colour changes     •   Decrease in sexual
•   Blood in the urine          desire
                                                        16
The results
1. Hospitalized in Kuala Lumpur Hospital
   for one and a half (1 ½) months
2. Lost of weight of 30 lbs from 165 to 135
   lbs
3. My father and wife took turns to take care
   of me in the hospital
4. Unable to walk because of the catheter at
   my femoral


                                                17
Emotional Stages of Denials

1.Why Me?
2.What wrong had I done?
3.Denial
4.Frustration
5.Depression
6.Anger
7. Final Acceptance

                                   18
What are OPTIONS?
           Organ Transplant

•   Living Related Transplants
•   Commercial Transplants
•   Deceased Organ Donor Transplants
•   Emotional Transplants

Dialysis
• Haemodialysis
• CAPD                                 19
Living Related Transplant

1.   Parents stepped forward for the work out of
     Living Related Transplant

2.   The programme was put off because of medical
     reasons

3. Organ donation from siblings- has to be
   altruistic and not influenced by external
   pressure



                                              20
Deceased Organ Donor Transplants
•    The average waiting time is 16 years for
     the occurrence of a deceased organ donor
     transplant
•    A dire Shortage of cadaveric kidneys
•    Less than 0.8 % of the Malaysian
    population have signed up the organ donor
    card
•    6,000 casualties yearly due to road
     accidents
•    Getting a deceased organ donor kidney is
     equivalent to 4 times as lucky in winning a
     seven digits first prize lottery
                                              21
Haemodialysis




21 years on Haemodialysis
 (Source: The Star paper)   22
What is CAPD ?
C=Continuous. The dialysis process does not stop, it
   continuously cleans the blood, 24 hours a day,
   everyday
A=Ambulatory. Allows freedom of movement,not
   attached to machine
P= Peritoneal. Using your own peritoneum to act as
   a filter for waste removal from the blood
D=Dialysis. Filtering and removing waste and
   assess fluid from your body


                                                 23
24
24
CAPD




   (Source: The Star Paper)
                              25
When to Perform CAPD Treatment




            (Source: Baxter)
                                 26
CAPD
-Flexible-no need going to hospital for dialyzing

-Went about my activities and repeat every 4 to 5
hours after dwell time
- Each bag exchange lasted for about half hour
- Each bag contains 2.0 litres of dialysate solution
-Restriction in fluid- 1.0 litre /day
-Personal Hygiene
- Permanent catheter
                                                    27
Coping with CAPD
-Fluid overload
-Breathlessness
-Quality of my work is affected
- 3 x weekly subcutaneous injection of 2000µ ml
                                           µ
 Erythropoietin
-Intractable body itch
-Regular check up in Kuala Lumpur Hospital

                                                  28
Coping with CAPD
-Took me 4 months to finally accept the fated illness

- A supportive family and my loving twin girls
-I was reassigned to desk job in charge of Material
Control from Technical Service
-Had to stop once or twice in the North South
Highway to take a cat nap before continuing with
the journey of 60 km to work
-To put up with unfriendly and hostile remarks

                                                      29
Wai Tan Kung Exercise




                        30
Vacation in New Zealand while on CAPD
                      7-19 April 1996
Rotorua




                                                  31
The Transplanted Kidney


                          Impaired
                           Kidneys




                          Transplanted
                            Kidney




                                         32
How I look before and after Kidney Transplant Operation




Pre Kidney Transplant-1994     Post Kidney Transplant – 1999
                                                               33
       Hb 7+gm/dl                      Hb 13+gm/dl
Year 1996       Jul 27 Jul 28 Jul 29 Jul 30 Jul 31
   Creatinine       1900        941           451         264     214

2000   1900
                 Creatinine Level Pre and Post Transplant Operation
1800

1600

1400

1200
                      941
1000

 800

 600                                451

 400                                                264
                                                                 214
 200

   0
                                                                           34
       'Jul 27       'Jul 28        'Jul 29         'Jul30       'Jul 31
My Twin Brother
     Sharing the same organ donor (27 July 1996)
10 June 2000                        27 May 2009




                                                   35
Post Transplantation Care

1. Regular medical follow up in KL Hospital
2. Look at life differently and positively
3. More fibrous diets-lots of fresh fruits,
   vegetables, and less meat
4. Exercise-brisk walking, badminton, wai-tan-
   kung tai exercise
5. Drink about 3.0 liters of water daily
6. Non smoking or drinker
7. Leading an absolutely normal quality of life
                                                  36
Post Transplantation Care




                            37
38
39
Sunday Star, 11 March 2012




                             40
41
41
MBA Graduation- 2nd Aug1999




                 With my mother at the
                 Universiti Putra
                 Malaysia




                                     42
9th Year After Transplant Operation




                                      43
Family on Vacation

                                               Beijing
                                           3rd- 7 June 2009




Shanghai, Suzhou, Wuxi, Hanzhou
      25 Aug -1st Sept 2011

                                                              44
Europe ( 27 May-6 June, 2012)




                                45
The Visionary Leader and Nephrologist



                                   Dato Dr. Zaki Morad
                                   Mohd Zaher

                                   Senior Consultant
                                   Nephrologist
                                    Head of Nephrology
                                   Department
                                   Kuala Lumpur Hospital
                                   1985 to 2006
NKF Kidney Walk-15 Mar 2008

                                                     46
47
           47
24 July 2010
Had it not due to my twins in giving me the
motivational inspiration to courageously
drive on plus a shower of medical care and
touch from Dato Dr. Zaki, his team of
doctors and medical staff from the
Nephrology and Urology Department of
Kuala Lumpur Hospital to remain healthy
to this day, it would have been difficult to
persevere for 19 years in seeing them
through their education, was the proudest
moment of achievement of my mission in
life                                         48
                                             48
SUKOM Kuala Lumpur Volunteer
          Sept. 1998




                               49
Power House of Ireland- 22nd -29 May 1999




                                            50
Epcot Centre Florida- 27 July 2000




NASA Kennedy Space Centre




                                                         51
World Kidney Day Walk at Dataran Merdeka
              4 March 2012




                                           52
53
10th Anniversary
  19 July 2006




             54
             54
Celebrating my 10th Anniversary of
successful transplant operation with
medical staff and organ recipients of
Kuala Lumpur Hospital




                                  55
15th Anniversary
                     June 28, 2011




With Datuk Dr. Ghazali-Consultant Nephrologist and
                                                       56
Head of Nephrology Department, Kuala Lumpur Hospital
Dialyzing Nurses, Post Transplant Coordinators and Nephrologist




                                                                  57
“You must give something to your fellow
men even if it’s a little thing, something
for which you get no pay but the privilege
of doing it”
                        Albert Schweitzer



                                         58
                                         58
Chen Hoe Lee:
I'm so glad to see how healthy you two
are looking! Thanks for keeping me up to
date on your progress and on all the work
you do for transplant issues. My family is
so happy that my husband's kidneys have
served you so well!
Best wishes, Madge Bender
(May 28, 2009)
                                         59
Dear Chen:
I'm so pleased that we were able to make
your life and your "twin's" life longer
and happier. Your efforts to make
transplants more common and acceptable
in your country and your region are
commendable. Keep up the good work
and good luck with it!
Best, Madge Bender
(May 29, 2009)
                                       60
We are always amazed at how much good
you are able to do! Thanks for keeping
me up to date with your activities and I
will look forward to seeing the SHARE
newsletter.


Take care of yourself, Madge Bender
(July 12, 2010)


                                           61
I always have these PICTURES in me each time I
 am out for Organ Donation Awareness Campaign

P-A burning passion and love for the job
I-Taking the initiative to strike a conversation on
Organ Donation
C-Communicate in the simplest possible language
on the topic
T-Take time off from my appointments or work
U-Understand from the viewpoint of the other person
R-Research on the topic and responsible for my work
E-Enjoy the work and ever grateful being given a
chance in this noble act. Expect nothing in return
S-A sincere and supportive family and derive the
                                                        62
greatest satisfaction for the work done as it saves lives
Green Ribbon Support Association
       1. To promote and provide support, care
           and counselling to patients who
           have undergone transplant of organs
           to return to lead normal life again in
          the society.

       2. To create awareness of major health
          diseases leading to end stage organ
          failure.

       3. To improve donor rates in the country.


                                            63
4th Malaysian Transplant Games-25 June 2006




                                              64
Be There for the newly diagnosed patients-

                              Prof. Masuri Othman of UKM-27     Feb 2003




Ms Marzianna wanted to donate a kidney
    to her 10 years old daughter-
                                                                       65
              5 Dec 2009
66
67
Hin Hua Chinese School, Klang-22nd June 2008




                                               68
KAS-NKF-Rotary Dialysis Unit-
    Kuching 25 May 2009




                                Hospital Mesra, Kota Kinabalu
                                       11 March 2011




                                  Bintulu Rotary Club-
                                      31st Oct 2008       69
Family of 6 from Lee’s- 29 Oct 2007




   Family of 7 from Kamlesh’s three
   generation-9 May 2009

      Buddhist Maha Vihara
  Temple,Brickfield, Kuala Lumpur
Family of 10 from Maniam’s-28 May 2010
                                       70
One of the recipients who had benefited from the corneas donation
            from the Sri Lankan Government in 2007




                                                                71
10th Japan Transplant Games
Kobe , Japan – 7-11 Sept 2000




                                72
73
15th World Transplant Games
             16-25 July 2005
    City of London, Ontario, Canada




With Yong Sze Teck-Heart Transplant
   Recipient after the 5.0 km walk
                                 74
World Transplant Games-
Gold medalist in Badminton
1997-Sydney, Australia
1999-Budapest, Hungary
2001- Kobe, Japan
2003-Nancy, France
2005-City of London, Canada


Silver medal
2007-Bangkok
2009-Gold Coast, Australia

                              75
Achievements of Malaysian Organ Recipients at World
                                      Transplant Games
  Year            Venue          No. of                               Achievements
                               Participants
1988     Singapore                  7         Badminton                 3 bronze
1991     Budapest                                         Did not participate
1993     Vancouver                  5         Badminton                 1 silver and 1 bronze
1995     Manchester                 4         Badminton                 1 silver
1997     Sydney                     9         Badminton                 4 gold, 2 silver
                                              Table Tennis              2 silver
1999     Budapest                   4         Badminton                 3 gold, 3 silver, 1 bronze
                                              Table Tennis              1 bronze
2001     Kobe                       6         Badminton                 3 gold, 2 silver
                                              Table Tennis              1 silver
2003     Nancy                      8         Badminton                 4 gold, 1 silver, 1 bronze
                                              Bowling                   1 bronze
2005     City of London            10         Badminton                 4 gold 1 Silver
                                              Table Tennis              1 Bronze

2007     Bangkok                    9         Badminton                 5 Gold 1 Silver 2 bronze
                                              Golf                      1 Gold
                                              Table Tennis              1 Silver
                                                                                              76
2009     Gold Coast                 8         Badminton                 2 Gold 3 Silver 1 Bronze
         Australia                            Table Tennis              1 Bronze
Financial difficulties faced by
                      kidneys failure patients
1. High cost of dialysis
    Haemodialysis – RM 150-250 session in private sector or RM
                     2,400/month
                   -RM 60/session by NGO or RM 1,000/month
    CAPD           - RM 2,500/month
    Subcutaneous injection of Erythropoietin – RM 60/injection
                   1 x to 3 x /week
2. High cost of anti-rejection drugs
   CELCEPT RM 480/box
   Tacrolimus or FK 506 - RM 500/box
3. Lost of job /income
4. A need foe occupational rehabilitation                        77
What are the Financial Assistance?
1. SOCSO
• Must have made at least 24 contributions to SOCSO
• Below 55 years old
• Claimable for Invalidity Pension Scheme
• Claimable up to 50 to 65% of your maximum income
  of RM 2,000 per month
• Dialysis is taken care of by SOCSO


2. Social Welfare Department
• Claimable up to RM 300 /month                       78
A Conservative Financial work out for
             CAPD/Transplant Operation
Amount (RM)        Per        Per      5 years   16 years   21 years
                  month       year

CAPD               2,500      30,000   150,000      -       150,000

Erythropoietin      480       5,760    28,800       -        28,800

Transplant in      80,000       -         -      80,000      80,000
China            ( one off)
(mid 1990s)
Anti rejection     1,500      18,000      -      288,000    288,000
drug
Total RM             -          -      178,800   368,000    546,800
                                                                      79
Dialysis and Kidney Transplant Patients in Malaysia 2000-2010

100000                14 new patients on dialysis each day                     5000
                                                                               4500
 10000                                                                         4000
                                                                               3500
  1000                                                                         3000
                                                                               2500
   100                                                                         2000
                                                                               1500
    10                                                                         1000
                                                                               500
     1                                                                         0
         2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
             New dialysis patients   New transplants    Patients on dialysis      80
   Data from the 18th Report of the Malaysian Dialysis and Transplant Registry 2010
81
WAITING LIST
Until 29 February 2012:
 Kidneys >15,120 patients
     data provided by e-MOSS

 Liver
         ~ 8 adults & 8 paediatrics
         >25 deaths since 2006        82
WAITING LIST

Until 29 February 2012

Heart ~ 3 patients

       >40 deaths since 1995

       41% 1-year survival rate

Heart-Lungs ~ 3 patients
                                  83

       >20 deaths since 2003
TRANSPLANTATION IN MALAYSIA

                                                      1-Year Survival        Total Transplants
        Organs / Tissues                                   Rate                 until 2009

Renal / Kidneys (since 1975)                                95%                      1,336
Liver (since 1995)                                          65%                         107
Heart (since 1997)                                          59%                           20
Lungs (since 2005)                                             -                            3
Heart-Lungs (since 2008)                                       -                       1
Corneas (since 1970s)                               77% (graft survival)             2,145
                                                                              (data collected since year 1998)


Heart Valves (since 1996)                                      -                        237
                                                                                                84
                 6th Report of Malaysian National Transplantation Registry 2009
85
86
WHICH ARE ORGANS & TISSUES CAN BE
                  DONATED?

                             TISSUES
    ORGANS                   • Heart valves4
•    Heart5                  • Corneas1
•    Lungs3                  • Skin2
•    Liver6                  • Bone7
•    Kidneys10               • Tendon
•    Hand/Arm                • Ligament
•    Pancreas11              • Arteries/veins9
                             • Amnion
                             • Bone marrow
                             • Intestines1287
Age         01 - 10       11-20      21-30      31-40      41-50      51- 60      61-70     71t- 80     81-90      91-90     Unknown
Group        years        years      years      years      years      years       years      years      years      years
Nos.          485         2665        4510       2835       1728       676         169         17          3          1            19



 5000
                                                                                   Total 13,104 Y2010
 4500


 4000


 3500


 3000


 2500


 2000


 1500


 1000


  500

                                                                                                                              88
    0
        01 - 10 yrs   11-20yrs    21-30yrs   31-40yrs   41-50yrs   51-60yrs    61-70yrs   71-80yrs    81-90yrs   91-99yrs   Unknown
Yr          1997      1998          1999          2000          2001       2002      2003     2004    2005   2006     2007   2008    2009     2010        2011



No          2566      2662          12607         16163         16607      13583     11516    8863    7492   10081    8885   12242   16445   20029       28769



 30000
                                                                                                       Year 2012- 1921
                                                                                               Total 190,041 as 29 Feb 2012
 25000




 20000




 15000




 10000




     5000




                                                                                                                                                    89
        0
               1997          1998          1999          2000       2001      2002     2003    2004   2005   2006    2007    2008    2009    2010        2011
Age                     01 - 10                   11-20                 21-30                 31-40                 41-50          51- 60                       61-70             71t- 80                81-90                 91-90              Unknown
Group                    years                    years                 years                 years                 years          years                        years              years                 years                 years
Nos.                           853               30823                 54856                 32260                 20445               7808                     1986                   517                    104                    49                     1824
%                          0.36                   20.34                 36.20                 21.29                 13.49              5.15                     1.31                   0.34                   0.07               0.03                       1.20


60000
                                                                                                                                  40
                                                  Total 151, 525 as at Dec 31, 2010

                                                                                                                                  35
50000


                                                                                                                                  30

40000
                                                                                                                                  25


30000                                                                                                                             20



                                                                                                                                  15
20000

                                                                                                                                  10

10000
                                                                                                                                   5


                                                                                                                                                                                                                                                     90
    0                                                                                                                              0
        01 - 10 yrs 11-20yrs    21-30yrs   31-40yrs   41-50yrs   51-60yrs   61-70yrs   71-80yrs   81-90yrs   91-99yrs   Unknown        01 - 10 yrs   11-20yrs    21-30yrs   31-40yrs    41-50yrs   51-60yrs    61-70yrs   71-80yrs    81-90yrs   91-99yrs    Unknown
Organ Pledgers by Genders Distribution

                              120,000                                                             60.00

                              100,000                                                             50.00
N o s . o f P le d g e rs




                                                                                                          P e r c e n ta g e %
                               80,000                                                             40.00
                                            Female
                                                                  Male
                               60,000                                                             30.00

                               40,000                                                             20.00

                               20,000                                                             10.00
                                                                                        Unknown
                                   -                                                              0.00
                                           Female                Male                 Unknown
                        Nos. of Pledgers   103,276               85,824                 941
                        Percentage %        54.34                45.16                 0.50
                                                                Genders                            91
Organ Pledgers by Racial Distribution

                             120,000


                             100,000


                              80,000
N o s . o f P le d g e r s




                              60,000


                              40,000


                              20,000


                                     -
                                                 Chinese     Indian             Malay              Other s   Unknown

                             Nos. of Pledger s   103,067     45,869             35,683              5,357      65

                             Per centage %        54.23       24.14              18.78              2.82      0.03

                                                                                                                       92
                                                                                Race
Think, Talk, Tell

Decide, Discuss,
    Donate
                    93
www.agiftoflife.gov.my
03-26810681 / 1800-88-9080
                             94
Don’t take your organs to heaven
Heaven knows we need them here

                                   95

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12 July 2012 Organ Donation-The Gift of Life-Hospital RPB

  • 1. Organ Donation-The Gift of Life Hospital Raja Permaisuri Bainun 12 July 2012 Lee Chen Hoe Deceased Organ Donor Recipient Kuala Lumpur Hospital 27 July 1996 1
  • 2. Organ Donation- The Gift of Life 1. Pre Kidneys Failure a. School Days b. Working/USM -Off Campus Course c. Settling Down with a Family 2. Managing My Kidneys Failure a. What are the Options b. Coping with CAPD c. Preparation for Transplant Operation 3. Post Kidney Transplantation a. Further Studies b. Family /Vacations c. Green Ribbon Support Association d. Organ Donation Awareness Campaign e. World Transplant Games f. Financial work out 2
  • 3. Pre-Kidneys Failure Less than One Year old With my father My mother 3
  • 4. Standard One Form Teacher Madam Lai Moy Fong The Sportsman of the Year 1970 4 一年级 (1965)-赖梅芳启蒙老师 (75, 100 and 200m)
  • 5. Sekolah Menengah Tuanku Abdul Rahman, Batu Arang Headmaster Mr. K S Singam 5 All Round Student of the Year 1974
  • 6. SMJK (I) Rawang -1975 & 1976 Six A Side Inter House Hockey -1976 I scored the winning goal during penalty 6
  • 7. Daily, I woke up at 4:30 am and walked 1 km to the bus station to take the 5:30 am bus to Kuala Lumpur located 60 km away from Batu Arang. Reached KL at 7:00 am and walked about 1 km from Jalan Tuanku Abdul Rahman to 7 attend school in St. John's Institution, Bukit Nenas
  • 8. Getting Through HSC Was The First Watershed in My Life I am greatly indebted to my classmate Ir. Siva Kumar and his loving mother Madam Vijaya Letchumi who permitted me to stay with them in Bangsar Park, KL for three months while in preparation for my HSC Examination Deepavali-5 Nov 2010 (1978) 8
  • 9. Tenaga Kimia Sdn Bhd A Commercial Explosives Manufacturing Company (16 Dec 1978 – 30 Sept 2000) Universiti Sains Malaysia 1981-1986 9
  • 10. 27 July 1986 B. Sc (Hons) Chemistry Universiti Sains Malaysia 10
  • 11. My loving twin girls 11
  • 12. 12
  • 13. My loving twin girls 13
  • 14. 14
  • 15. 15
  • 16. 2. Managing of Kidneys Failure- what are the symptoms • Swollen ankles or • Shortness of breath corner of the eyes in • Difficulty in getting the morning to sleep • Weight Loss • Chill • Nausea • Bad taste in mouth • Loss of appetite • Forgetfulness • Muscle cramp • Decrease in urine • Itching output • Skin colour changes • Decrease in sexual • Blood in the urine desire 16
  • 17. The results 1. Hospitalized in Kuala Lumpur Hospital for one and a half (1 ½) months 2. Lost of weight of 30 lbs from 165 to 135 lbs 3. My father and wife took turns to take care of me in the hospital 4. Unable to walk because of the catheter at my femoral 17
  • 18. Emotional Stages of Denials 1.Why Me? 2.What wrong had I done? 3.Denial 4.Frustration 5.Depression 6.Anger 7. Final Acceptance 18
  • 19. What are OPTIONS? Organ Transplant • Living Related Transplants • Commercial Transplants • Deceased Organ Donor Transplants • Emotional Transplants Dialysis • Haemodialysis • CAPD 19
  • 20. Living Related Transplant 1. Parents stepped forward for the work out of Living Related Transplant 2. The programme was put off because of medical reasons 3. Organ donation from siblings- has to be altruistic and not influenced by external pressure 20
  • 21. Deceased Organ Donor Transplants • The average waiting time is 16 years for the occurrence of a deceased organ donor transplant • A dire Shortage of cadaveric kidneys • Less than 0.8 % of the Malaysian population have signed up the organ donor card • 6,000 casualties yearly due to road accidents • Getting a deceased organ donor kidney is equivalent to 4 times as lucky in winning a seven digits first prize lottery 21
  • 22. Haemodialysis 21 years on Haemodialysis (Source: The Star paper) 22
  • 23. What is CAPD ? C=Continuous. The dialysis process does not stop, it continuously cleans the blood, 24 hours a day, everyday A=Ambulatory. Allows freedom of movement,not attached to machine P= Peritoneal. Using your own peritoneum to act as a filter for waste removal from the blood D=Dialysis. Filtering and removing waste and assess fluid from your body 23
  • 24. 24 24
  • 25. CAPD (Source: The Star Paper) 25
  • 26. When to Perform CAPD Treatment (Source: Baxter) 26
  • 27. CAPD -Flexible-no need going to hospital for dialyzing -Went about my activities and repeat every 4 to 5 hours after dwell time - Each bag exchange lasted for about half hour - Each bag contains 2.0 litres of dialysate solution -Restriction in fluid- 1.0 litre /day -Personal Hygiene - Permanent catheter 27
  • 28. Coping with CAPD -Fluid overload -Breathlessness -Quality of my work is affected - 3 x weekly subcutaneous injection of 2000µ ml µ Erythropoietin -Intractable body itch -Regular check up in Kuala Lumpur Hospital 28
  • 29. Coping with CAPD -Took me 4 months to finally accept the fated illness - A supportive family and my loving twin girls -I was reassigned to desk job in charge of Material Control from Technical Service -Had to stop once or twice in the North South Highway to take a cat nap before continuing with the journey of 60 km to work -To put up with unfriendly and hostile remarks 29
  • 30. Wai Tan Kung Exercise 30
  • 31. Vacation in New Zealand while on CAPD 7-19 April 1996 Rotorua 31
  • 32. The Transplanted Kidney Impaired Kidneys Transplanted Kidney 32
  • 33. How I look before and after Kidney Transplant Operation Pre Kidney Transplant-1994 Post Kidney Transplant – 1999 33 Hb 7+gm/dl Hb 13+gm/dl
  • 34. Year 1996 Jul 27 Jul 28 Jul 29 Jul 30 Jul 31 Creatinine 1900 941 451 264 214 2000 1900 Creatinine Level Pre and Post Transplant Operation 1800 1600 1400 1200 941 1000 800 600 451 400 264 214 200 0 34 'Jul 27 'Jul 28 'Jul 29 'Jul30 'Jul 31
  • 35. My Twin Brother Sharing the same organ donor (27 July 1996) 10 June 2000 27 May 2009 35
  • 36. Post Transplantation Care 1. Regular medical follow up in KL Hospital 2. Look at life differently and positively 3. More fibrous diets-lots of fresh fruits, vegetables, and less meat 4. Exercise-brisk walking, badminton, wai-tan- kung tai exercise 5. Drink about 3.0 liters of water daily 6. Non smoking or drinker 7. Leading an absolutely normal quality of life 36
  • 38. 38
  • 39. 39
  • 40. Sunday Star, 11 March 2012 40
  • 41. 41 41
  • 42. MBA Graduation- 2nd Aug1999 With my mother at the Universiti Putra Malaysia 42
  • 43. 9th Year After Transplant Operation 43
  • 44. Family on Vacation Beijing 3rd- 7 June 2009 Shanghai, Suzhou, Wuxi, Hanzhou 25 Aug -1st Sept 2011 44
  • 45. Europe ( 27 May-6 June, 2012) 45
  • 46. The Visionary Leader and Nephrologist Dato Dr. Zaki Morad Mohd Zaher Senior Consultant Nephrologist Head of Nephrology Department Kuala Lumpur Hospital 1985 to 2006 NKF Kidney Walk-15 Mar 2008 46
  • 47. 47 47 24 July 2010
  • 48. Had it not due to my twins in giving me the motivational inspiration to courageously drive on plus a shower of medical care and touch from Dato Dr. Zaki, his team of doctors and medical staff from the Nephrology and Urology Department of Kuala Lumpur Hospital to remain healthy to this day, it would have been difficult to persevere for 19 years in seeing them through their education, was the proudest moment of achievement of my mission in life 48 48
  • 49. SUKOM Kuala Lumpur Volunteer Sept. 1998 49
  • 50. Power House of Ireland- 22nd -29 May 1999 50
  • 51. Epcot Centre Florida- 27 July 2000 NASA Kennedy Space Centre 51
  • 52. World Kidney Day Walk at Dataran Merdeka 4 March 2012 52
  • 53. 53
  • 54. 10th Anniversary 19 July 2006 54 54
  • 55. Celebrating my 10th Anniversary of successful transplant operation with medical staff and organ recipients of Kuala Lumpur Hospital 55
  • 56. 15th Anniversary June 28, 2011 With Datuk Dr. Ghazali-Consultant Nephrologist and 56 Head of Nephrology Department, Kuala Lumpur Hospital
  • 57. Dialyzing Nurses, Post Transplant Coordinators and Nephrologist 57
  • 58. “You must give something to your fellow men even if it’s a little thing, something for which you get no pay but the privilege of doing it” Albert Schweitzer 58 58
  • 59. Chen Hoe Lee: I'm so glad to see how healthy you two are looking! Thanks for keeping me up to date on your progress and on all the work you do for transplant issues. My family is so happy that my husband's kidneys have served you so well! Best wishes, Madge Bender (May 28, 2009) 59
  • 60. Dear Chen: I'm so pleased that we were able to make your life and your "twin's" life longer and happier. Your efforts to make transplants more common and acceptable in your country and your region are commendable. Keep up the good work and good luck with it! Best, Madge Bender (May 29, 2009) 60
  • 61. We are always amazed at how much good you are able to do! Thanks for keeping me up to date with your activities and I will look forward to seeing the SHARE newsletter. Take care of yourself, Madge Bender (July 12, 2010) 61
  • 62. I always have these PICTURES in me each time I am out for Organ Donation Awareness Campaign P-A burning passion and love for the job I-Taking the initiative to strike a conversation on Organ Donation C-Communicate in the simplest possible language on the topic T-Take time off from my appointments or work U-Understand from the viewpoint of the other person R-Research on the topic and responsible for my work E-Enjoy the work and ever grateful being given a chance in this noble act. Expect nothing in return S-A sincere and supportive family and derive the 62 greatest satisfaction for the work done as it saves lives
  • 63. Green Ribbon Support Association 1. To promote and provide support, care and counselling to patients who have undergone transplant of organs to return to lead normal life again in the society. 2. To create awareness of major health diseases leading to end stage organ failure. 3. To improve donor rates in the country. 63
  • 64. 4th Malaysian Transplant Games-25 June 2006 64
  • 65. Be There for the newly diagnosed patients- Prof. Masuri Othman of UKM-27 Feb 2003 Ms Marzianna wanted to donate a kidney to her 10 years old daughter- 65 5 Dec 2009
  • 66. 66
  • 67. 67
  • 68. Hin Hua Chinese School, Klang-22nd June 2008 68
  • 69. KAS-NKF-Rotary Dialysis Unit- Kuching 25 May 2009 Hospital Mesra, Kota Kinabalu 11 March 2011 Bintulu Rotary Club- 31st Oct 2008 69
  • 70. Family of 6 from Lee’s- 29 Oct 2007 Family of 7 from Kamlesh’s three generation-9 May 2009 Buddhist Maha Vihara Temple,Brickfield, Kuala Lumpur Family of 10 from Maniam’s-28 May 2010 70
  • 71. One of the recipients who had benefited from the corneas donation from the Sri Lankan Government in 2007 71
  • 72. 10th Japan Transplant Games Kobe , Japan – 7-11 Sept 2000 72
  • 73. 73
  • 74. 15th World Transplant Games 16-25 July 2005 City of London, Ontario, Canada With Yong Sze Teck-Heart Transplant Recipient after the 5.0 km walk 74
  • 75. World Transplant Games- Gold medalist in Badminton 1997-Sydney, Australia 1999-Budapest, Hungary 2001- Kobe, Japan 2003-Nancy, France 2005-City of London, Canada Silver medal 2007-Bangkok 2009-Gold Coast, Australia 75
  • 76. Achievements of Malaysian Organ Recipients at World Transplant Games Year Venue No. of Achievements Participants 1988 Singapore 7 Badminton 3 bronze 1991 Budapest Did not participate 1993 Vancouver 5 Badminton 1 silver and 1 bronze 1995 Manchester 4 Badminton 1 silver 1997 Sydney 9 Badminton 4 gold, 2 silver Table Tennis 2 silver 1999 Budapest 4 Badminton 3 gold, 3 silver, 1 bronze Table Tennis 1 bronze 2001 Kobe 6 Badminton 3 gold, 2 silver Table Tennis 1 silver 2003 Nancy 8 Badminton 4 gold, 1 silver, 1 bronze Bowling 1 bronze 2005 City of London 10 Badminton 4 gold 1 Silver Table Tennis 1 Bronze 2007 Bangkok 9 Badminton 5 Gold 1 Silver 2 bronze Golf 1 Gold Table Tennis 1 Silver 76 2009 Gold Coast 8 Badminton 2 Gold 3 Silver 1 Bronze Australia Table Tennis 1 Bronze
  • 77. Financial difficulties faced by kidneys failure patients 1. High cost of dialysis Haemodialysis – RM 150-250 session in private sector or RM 2,400/month -RM 60/session by NGO or RM 1,000/month CAPD - RM 2,500/month Subcutaneous injection of Erythropoietin – RM 60/injection 1 x to 3 x /week 2. High cost of anti-rejection drugs CELCEPT RM 480/box Tacrolimus or FK 506 - RM 500/box 3. Lost of job /income 4. A need foe occupational rehabilitation 77
  • 78. What are the Financial Assistance? 1. SOCSO • Must have made at least 24 contributions to SOCSO • Below 55 years old • Claimable for Invalidity Pension Scheme • Claimable up to 50 to 65% of your maximum income of RM 2,000 per month • Dialysis is taken care of by SOCSO 2. Social Welfare Department • Claimable up to RM 300 /month 78
  • 79. A Conservative Financial work out for CAPD/Transplant Operation Amount (RM) Per Per 5 years 16 years 21 years month year CAPD 2,500 30,000 150,000 - 150,000 Erythropoietin 480 5,760 28,800 - 28,800 Transplant in 80,000 - - 80,000 80,000 China ( one off) (mid 1990s) Anti rejection 1,500 18,000 - 288,000 288,000 drug Total RM - - 178,800 368,000 546,800 79
  • 80. Dialysis and Kidney Transplant Patients in Malaysia 2000-2010 100000 14 new patients on dialysis each day 5000 4500 10000 4000 3500 1000 3000 2500 100 2000 1500 10 1000 500 1 0 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 New dialysis patients New transplants Patients on dialysis 80 Data from the 18th Report of the Malaysian Dialysis and Transplant Registry 2010
  • 81. 81
  • 82. WAITING LIST Until 29 February 2012: Kidneys >15,120 patients data provided by e-MOSS Liver ~ 8 adults & 8 paediatrics >25 deaths since 2006 82
  • 83. WAITING LIST Until 29 February 2012 Heart ~ 3 patients >40 deaths since 1995 41% 1-year survival rate Heart-Lungs ~ 3 patients 83 >20 deaths since 2003
  • 84. TRANSPLANTATION IN MALAYSIA 1-Year Survival Total Transplants Organs / Tissues Rate until 2009 Renal / Kidneys (since 1975) 95% 1,336 Liver (since 1995) 65% 107 Heart (since 1997) 59% 20 Lungs (since 2005) - 3 Heart-Lungs (since 2008) - 1 Corneas (since 1970s) 77% (graft survival) 2,145 (data collected since year 1998) Heart Valves (since 1996) - 237 84 6th Report of Malaysian National Transplantation Registry 2009
  • 85. 85
  • 86. 86
  • 87. WHICH ARE ORGANS & TISSUES CAN BE DONATED? TISSUES ORGANS • Heart valves4 • Heart5 • Corneas1 • Lungs3 • Skin2 • Liver6 • Bone7 • Kidneys10 • Tendon • Hand/Arm • Ligament • Pancreas11 • Arteries/veins9 • Amnion • Bone marrow • Intestines1287
  • 88. Age 01 - 10 11-20 21-30 31-40 41-50 51- 60 61-70 71t- 80 81-90 91-90 Unknown Group years years years years years years years years years years Nos. 485 2665 4510 2835 1728 676 169 17 3 1 19 5000 Total 13,104 Y2010 4500 4000 3500 3000 2500 2000 1500 1000 500 88 0 01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown
  • 89. Yr 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 No 2566 2662 12607 16163 16607 13583 11516 8863 7492 10081 8885 12242 16445 20029 28769 30000 Year 2012- 1921 Total 190,041 as 29 Feb 2012 25000 20000 15000 10000 5000 89 0 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
  • 90. Age 01 - 10 11-20 21-30 31-40 41-50 51- 60 61-70 71t- 80 81-90 91-90 Unknown Group years years years years years years years years years years Nos. 853 30823 54856 32260 20445 7808 1986 517 104 49 1824 % 0.36 20.34 36.20 21.29 13.49 5.15 1.31 0.34 0.07 0.03 1.20 60000 40 Total 151, 525 as at Dec 31, 2010 35 50000 30 40000 25 30000 20 15 20000 10 10000 5 90 0 0 01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown 01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown
  • 91. Organ Pledgers by Genders Distribution 120,000 60.00 100,000 50.00 N o s . o f P le d g e rs P e r c e n ta g e % 80,000 40.00 Female Male 60,000 30.00 40,000 20.00 20,000 10.00 Unknown - 0.00 Female Male Unknown Nos. of Pledgers 103,276 85,824 941 Percentage % 54.34 45.16 0.50 Genders 91
  • 92. Organ Pledgers by Racial Distribution 120,000 100,000 80,000 N o s . o f P le d g e r s 60,000 40,000 20,000 - Chinese Indian Malay Other s Unknown Nos. of Pledger s 103,067 45,869 35,683 5,357 65 Per centage % 54.23 24.14 18.78 2.82 0.03 92 Race
  • 93. Think, Talk, Tell Decide, Discuss, Donate 93
  • 95. Don’t take your organs to heaven Heaven knows we need them here 95