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

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

1313

My loving twin girls

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

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

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

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

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

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


41% 1-year survival rate

Heart-Lungs ~ 3 patients


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

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


Total 151, 525 as at Dec 31, 2010

0

5

10

15

20

25

30

35

40


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

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

Health & Medicine

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