12 July 2012 Organ Donation-The Gift of Life-Hospital RPB
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11
Lee Chen HoeDeceased Organ Donor Recipient
Kuala Lumpur Hospital
27 July 1996
Organ Donation-The Gift of Life
Hospital Raja Permaisuri Bainun
12 July 2012
22
1.1. Pre Kidneys FailurePre Kidneys Failure
a.a. School DaysSchool Days
b.b. Working/USM Working/USM --Off Campus CourseOff Campus Course
c.c. Settling Down with a FamilySettling Down with a Family
2.2. Managing My Kidneys FailureManaging My Kidneys Failure
a.a. What are the Options What are the Options
b.b. Coping with CAPDCoping with CAPD
c.c. Preparation for Transplant OperationPreparation for Transplant Operation
3.3. Post Kidney TransplantationPost Kidney Transplantation
a.a. Further StudiesFurther Studies
b.b. Family /VacationsFamily /Vacations
c.c. Green Ribbon Support AssociationGreen Ribbon Support Association
d.d. Organ Donation Awareness CampaignOrgan Donation Awareness Campaign
e.e. World Transplant GamesWorld Transplant Games
f.f. Financial work outFinancial work out
Organ Donation- The Gift of Life
33
Pre-Kidneys Failure
Less than One Year old
With my father
My mother
4444The Sportsman of the Year 1970
(75, 100 and 200m)
Standard One Form Teacher
Madam Lai Moy Fong
一年级 (1965)-赖梅芳启蒙老师
55
All Round Student of the Year 1974
Sekolah Menengah Tuanku Abdul Rahman, Batu Arang
Headmaster Mr.
K S Singam
66
Six A Side Inter House
Hockey -1976
I scored the winning goal
during penalty
SMJK (I) Rawang -1975 & 1976
77
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
attend school in St. John's Institution, Bukit Nenas
88
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
(1978)Deepavali-5 Nov 2010
Getting Through HSC Was The First Watershed in My Life
99
Tenaga Kimia Sdn Bhd
A Commercial Explosives Manufacturing
Company
(16 Dec 1978 – 30 Sept 2000)
Universiti Sains
Malaysia
1981-1986
1010
27 July 198627 July 1986
B. Sc (Hons) Chemistry
Universiti Sains Malaysia
1111
My loving twin girls
1212
1313
My loving twin girls
1414
1515
1616
2. Managing of Kidneys Failure-
what are the symptoms
•• Swollen ankles or Swollen ankles or
corner of the eyes in corner of the eyes in
the morningthe morning
•• Weight LossWeight Loss
•• NauseaNausea
•• Loss of appetiteLoss of appetite
•• Muscle crampMuscle cramp
•• ItchingItching
•• Skin colour changesSkin colour changes
•• Blood in the urineBlood in the urine
•• Shortness of breath Shortness of breath
•• Difficulty in getting Difficulty in getting
to sleepto sleep
•• ChillChill
•• Bad taste in mouthBad taste in mouth
•• ForgetfulnessForgetfulness
•• Decrease in urine Decrease in urine
outputoutput
•• Decrease in sexual Decrease in sexual
desiredesire
1717
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
1818
Emotional Stages of Denials
1.Why Me?
2.What wrong had I done?
3.Denial
4.Frustration
5.Depression
6.Anger
7. Final Acceptance
1919
What are OPTIONS?
Organ TransplantOrgan Transplant
•• Living Related TransplantsLiving Related Transplants
•• Commercial TransplantsCommercial Transplants
•• Deceased Organ Donor TransplantsDeceased Organ Donor Transplants
•• Emotional TransplantsEmotional Transplants
DialysisDialysis
•• HaemodialysisHaemodialysis
•• CAPDCAPD
2020
Living Related Transplant
1.1. Parents stepped forward for the work out of Parents stepped forward for the work out of Living Related TransplantLiving Related Transplant
2.2. The programme was put off because of medical The programme was put off because of medical reasonsreasons
3.3. Organ donation from siblingsOrgan donation from siblings-- has to be has to be altruistic and not influenced by external altruistic and not influenced by external pressure pressure
2121
Deceased Organ Donor Transplants
•• The average waiting time is 16 years for The average waiting time is 16 years for the occurrence of a deceased organ donor the occurrence of a deceased organ donor transplanttransplant
•• A dire Shortage of A dire Shortage of cadavericcadaveric kidneyskidneys
•• Less than 0.8 % of the Malaysian Less than 0.8 % of the Malaysian
population have signed up the organ donor population have signed up the organ donor
cardcard
•• 6,000 casualties yearly due to road 6,000 casualties yearly due to road accidentsaccidents
•• Getting a deceased organ donor kidney is Getting a deceased organ donor kidney is equivalent to 4 times as lucky in winning a equivalent to 4 times as lucky in winning a seven digits first prize lotteryseven digits first prize lottery
2222
Haemodialysis
21 years on Haemodialysis
(Source: The Star paper)
2323
What is CAPD ?
CC==CContinuous. The dialysis process does not stop, it ontinuous. The dialysis process does not stop, it
continuouslycontinuously cleans the blood, 24 hours a day, cleans the blood, 24 hours a day,
everydayeveryday
AA==AAmbulatory. Allows mbulatory. Allows freedom of freedom of movementmovement,not,not
attached to machineattached to machine
PP= = PPeritoneal. Using your own eritoneal. Using your own peritoneumperitoneum to act as to act as
a filter for waste removal from the blooda filter for waste removal from the blood
DD==DDialysis. ialysis. Filtering and removingFiltering and removing waste and waste and
assess fluid from your body assess fluid from your body
242424
2525
CAPD
(Source: The Star Paper)
2626
(Source: Baxter)
When to Perform CAPD Treatment
2727
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
2828
Coping with CAPD
-Fluid overload
-Breathlessness
-Quality of my work is affected
- 3 x weekly subcutaneous injection of 2000µµµµ mlmlmlml
Erythropoietin
-Intractable body itch
-Regular check up in Kuala Lumpur Hospital
2929
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
3030
Wai Tan Kung Exercise
3131
Vacation in New Zealand while on CAPD
7-19 April 1996Rotorua
3232
Transplanted
Kidney
Impaired
Kidneys
The Transplanted Kidney
3333
How I look before and after Kidney Transplant OperationHow I look before and after Kidney Transplant Operation
Pre Kidney Transplant-1994
Hb 7+gm/dl
Post Kidney Transplant – 1999
Hb 13+gm/dl
3434
2142644519411900Creatinine
Jul 31Jul 30Jul 29Jul 28Jul 27Year 1996
1900
941
451
264214
0
200
400
600
800
1000
1200
1400
1600
1800
2000
'Jul 27 'Jul 28 'Jul 29 'Jul30 'Jul 31
Creatinine Level Pre and Post Transplant Operation
3535
My Twin Brother
Sharing the same organ donor (27 July 1996)
10 June 2000 27 May 2009
3636
Post Transplantation CarePost 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
3737
Post Transplantation CarePost Transplantation Care
3838
3939
40404040
Sunday Star, 11 March 2012
414141
4242
MBA GraduationGraduation-- 22ndnd Aug1999 Aug1999
With my mother at the
Universiti Putra
Malaysia
4343
9th Year After Transplant Operation
4444
Beijing
3rd- 7 June 2009
Shanghai, Suzhou, Wuxi, Hanzhou
25 Aug -1st Sept 2011
Family on Vacation
4545
Europe ( 27 May-6 June, 2012)
4646
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
474747
24 July 2010
484848
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
4949
SUKOM Kuala Lumpur Volunteer
Sept. 1998
5050
Power House of Ireland- 22nd -29 May 1999
5151
NASA Kennedy Space CentreNASA Kennedy Space Centre
Epcot Centre FloridaEpcot Centre Florida-- 27 July 200027 July 2000
5252
World Kidney Day Walk at Dataran Merdeka
4 March 2012
5353
545454
10th Anniversary
19 July 2006
5555
Celebrating my 10Celebrating my 10thth Anniversary of Anniversary of
successful transplant operation with successful transplant operation with
medical staff and organ recipients of medical staff and organ recipients of
Kuala Lumpur HospitalKuala Lumpur Hospital
5656
15th Anniversary
June 28, 2011
With Datuk Dr. Ghazali-Consultant Nephrologist and
Head of Nephrology Department, Kuala Lumpur Hospital
5757
Dialyzing Nurses, Post Transplant Coordinators and Nephrologist
585858
“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
5959
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)
6060
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)
6161
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)
6262
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 DonationC-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 returnS-A sincere and supportive family and derive the
greatest satisfaction for the work done as it saves lives
63636363
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.
Green Ribbon Support Association
6464
4th Malaysian Transplant Games-25 June 2006
6565
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-
5 Dec 2009
6666
6767
6868
Hin Hin HuaHua Chinese School, KlangChinese School, Klang--2222ndnd June 2008June 2008
6969
KAS-NKF-Rotary Dialysis Unit-
Kuching 25 May 2009
Bintulu Rotary Club-
31st Oct 2008
Hospital Mesra, Kota Kinabalu
11 March 2011
7070
Family of 7 from Kamlesh’s three
generation-9 May 2009
Family of 6 from Lee’s- 29 Oct 2007
Family of 10 from Maniam’s-28 May 2010
Buddhist Maha Vihara
Temple,Brickfield, Kuala Lumpur
7171
One of the recipients who had benefited from the corneas donatioOne of the recipients who had benefited from the corneas donation n
from the Sri Lankan Government in 2007from the Sri Lankan Government in 2007
7272
1010thth Japan Transplant Games Japan Transplant Games
Kobe , Japan Kobe , Japan –– 77--11 Sept 200011 Sept 2000
7373
7474
1515thth World Transplant GamesWorld Transplant Games
1616--25 July 200525 July 2005
City of London, Ontario, CanadaCity of London, Ontario, Canada
With Yong Sze Teck-Heart Transplant
Recipient after the 5.0 km walk
7575
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
7676
Achievements of Malaysian Organ Recipients at World
Transplant GamesYearYear VenueVenue No. of No. of
ParticipantsParticipants
AchievementsAchievements
19881988 SingaporeSingapore 77 BadmintonBadminton 3 bronze3 bronze
19911991 BudapestBudapest Did not participateDid not participate
19931993 Vancouver Vancouver 55 Badminton Badminton 1 silver and 1 bronze1 silver and 1 bronze
19951995 ManchesterManchester 44 Badminton Badminton 1 silver1 silver
19971997 SydneySydney 99 BadmintonBadminton 4 gold, 2 silver4 gold, 2 silver
Table TennisTable Tennis 2 silver2 silver
19991999 BudapestBudapest 44 BadmintonBadminton 3 gold, 3 silver, 1 bronze3 gold, 3 silver, 1 bronze
Table TennisTable Tennis 1 bronze1 bronze
20012001 Kobe Kobe 66 BadmintonBadminton 3 gold, 2 silver 3 gold, 2 silver
Table TennisTable Tennis 1 silver 1 silver
20032003 NancyNancy 8 8 BadmintonBadminton 4 gold, 1 silver, 1 bronze4 gold, 1 silver, 1 bronze
BowlingBowling 1 bronze1 bronze
20052005 City of LondonCity of London 1010 BadmintonBadminton 4 gold 1 Silver4 gold 1 Silver
Table TennisTable Tennis 1 Bronze1 Bronze
20072007 BangkokBangkok 99 BadmintonBadminton 5 Gold 1 Silver 2 bronze5 Gold 1 Silver 2 bronze
GolfGolf 1 Gold1 Gold
Table TennisTable Tennis 1 Silver1 Silver
20092009 Gold CoastGold Coast
AustraliaAustralia
88 BadmintonBadminton 2 Gold 3 Silver 1 Bronze2 Gold 3 Silver 1 Bronze
Table TennisTable Tennis 1 Bronze1 Bronze
7777
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
7878
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
7979
A Conservative Financial A Conservative Financial work out for out for
CAPD/Transplant OperationCAPD/Transplant Operation
Amount (Amount (RMRM)) Per Per
monthmonth
Per Per
yearyear
5 years5 years 16 years16 years 21 years21 years
CAPDCAPD 2,5002,500 30,00030,000 150,000150,000 -- 150,000150,000
ErythropoietinErythropoietin 480480 5,7605,760 28,80028,800 -- 28,80028,800
Transplant in Transplant in
China China
(mid 1990s)(mid 1990s)
80,00080,000
( one off)( one off)
-- -- 80,00080,000 80,00080,000
Anti rejection Anti rejection
drug drug
1,5001,500 18,00018,000 -- 288,000288,000 288,000288,000
Total RMTotal RM -- -- 178,800178,800 368,000368,000 546,800546,800
8080
Data from the 18th Report of the Malaysian Dialysis and Transplant Registry 2010
Dialysis and Kidney Transplant Patients in Malaysia 2000-2010
1
10
100
1000
10000
100000
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
New dialysis patients New transplants Patients on dialysis
14 new patients on dialysis each day
8181
8282
WAITING LIST
Until 29 February 2012:
Kidneys >15,120 patients
data provided by e-MOSS
Liver
~ 8 adults & 8 paediatrics
>25 deaths since 2006
8383
�Until 29 February 2012
Heart ~ 3 patients
>40 deaths since 1995
41% 1-year survival rate
Heart-Lungs ~ 3 patients
>20 deaths since 2003
WAITING LIST
8484
TRANSPLANTATION IN MALAYSIA
Organs / Tissues1-Year Survival
Rate
Total Transplants
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
6th Report of Malaysian National Transplantation Registry 2009
8585
8686
8787
WHICH ARE ORGANS & TISSUES CAN BE
DONATED?
ORGANSORGANS
• Heart5
• Lungs3
• Liver6
• Kidneys10
• Hand/Arm
• Pancreas11
TISSUESTISSUES
• Heart valves4
• Corneas1
• Skin2
• Bone7
• Tendon
• Ligament
• Arteries/veins9
• Amnion
• Bone marrow
• Intestines12
8888
1913171696761728283545102665485Nos.
Unknown91-90
years
81-90
years
71t- 80
years
61-70
years
51- 60
years
41-50
years
31-40
years
21-30
years
11-20
years
01 - 10
years
Age
Group
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown
Total 13,104 Y2010
8989
20029
2010
8885
2007
10081
2006
7492
2005
2876916445122428863115161358316607161631260726622566No
20112009200820042003200220012000199919981997Yr
0
5000
10000
15000
20000
25000
30000
1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
Year 2012- 1921
Total 190,041 as 29 Feb 2012
9090
1.200.030.070.341.315.1513.4921.2936.2020.340.36%
1824491045171986780820445322605485630823853Nos.
Unknown91-90
years
81-90
years
71t- 80
years
61-70
years
51- 60
years
41-50
years
31-40
years
21-30
years
11-20
years
01 - 10
years
Age
Group
0
10000
20000
30000
40000
50000
60000
01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown
Total 151, 525 as at Dec 31, 2010
0
5
10
15
20
25
30
35
40
01 - 10 yrs 11-20yrs 21-30yrs 31-40yrs 41-50yrs 51-60yrs 61-70yrs 71-80yrs 81-90yrs 91-99yrs Unknown
9191
Organ Pledgers by Genders Distribution
FemaleMale
Unknown-
20,000
40,000
60,000
80,000
100,000
120,000
Genders
No
s.
of
Ple
dg
ers
0.00
10.00
20.00
30.00
40.00
50.00
60.00
Pe
rce
nta
ge
%
Nos. of Pledgers 103,276 85,824 941
Percentage % 54.34 45.16 0.50
Female Male Unknown
9292
-
20,000
40,000
60,000
80,000
100,000
120,000N
os
. o
f P
led
ge
rs
Race
Organ Pledgers by Racial Distribution
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
Chinese Indian Malay Other s Unknown
9393
Think, Talk, Tell
Decide, Discuss,
Donate
9494
www.agiftoflife.gov.my
03-26810681 / 1800-88-9080
9595
Don’t take your organs to heaven
Heaven knows we need them here
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