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
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
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
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
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
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
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
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
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
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
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
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
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