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

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  • 1. Organ Donation-The Gift of LifeHospital 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 Life1. Pre Kidneys Failure a. School Days b. Working/USM -Off Campus Course c. Settling Down with a Family2. Managing My Kidneys Failure a. What are the Options b. Coping with CAPD c. Preparation for Transplant Operation3. 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 FailureLess 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 5All 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 5:30am bus to Kuala Lumpur located 60 km away from Batu Arang. Reached KLat 7:00 am and walked about 1 km from Jalan Tuanku Abdul Rahman to 7attend school in St. Johns 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 results1. Hospitalized in Kuala Lumpur Hospital for one and a half (1 ½) months2. Lost of weight of 30 lbs from 165 to 135 lbs3. My father and wife took turns to take care of me in the hospital4. Unable to walk because of the catheter at my femoral 17
  • 18. Emotional Stages of Denials1.Why Me?2.What wrong had I done?3.Denial4.Frustration5.Depression6.Anger7. Final Acceptance 18
  • 19. What are OPTIONS? Organ Transplant• Living Related Transplants• Commercial Transplants• Deceased Organ Donor Transplants• Emotional TransplantsDialysis• Haemodialysis• CAPD 19
  • 20. Living Related Transplant1. Parents stepped forward for the work out of Living Related Transplant2. The programme was put off because of medical reasons3. 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. Haemodialysis21 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, everydayA=Ambulatory. Allows freedom of movement,not attached to machineP= Peritoneal. Using your own peritoneum to act as a filter for waste removal from the bloodD=Dialysis. Filtering and removing waste and assess fluid from your body 23
  • 24. 2424
  • 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 5hours 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 MaterialControl from Technical Service-Had to stop once or twice in the North SouthHighway to take a cat nap before continuing withthe 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 1996Rotorua 31
  • 32. The Transplanted Kidney Impaired Kidneys Transplanted Kidney 32
  • 33. How I look before and after Kidney Transplant OperationPre 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 2142000 1900 Creatinine Level Pre and Post Transplant Operation1800160014001200 9411000 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 Care1. Regular medical follow up in KL Hospital2. Look at life differently and positively3. More fibrous diets-lots of fresh fruits, vegetables, and less meat4. Exercise-brisk walking, badminton, wai-tan- kung tai exercise5. Drink about 3.0 liters of water daily6. Non smoking or drinker7. Leading an absolutely normal quality of life 36
  • 37. Post Transplantation Care 37
  • 38. 38
  • 39. 39
  • 40. Sunday Star, 11 March 2012 40
  • 41. 4141
  • 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 2009Shanghai, 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 2006NKF Kidney Walk-15 Mar 2008 46
  • 47. 47 4724 July 2010
  • 48. Had it not due to my twins in giving me themotivational inspiration to courageouslydrive on plus a shower of medical care andtouch from Dato Dr. Zaki, his team ofdoctors and medical staff from theNephrology and Urology Department ofKuala Lumpur Hospital to remain healthyto this day, it would have been difficult topersevere for 19 years in seeing themthrough their education, was the proudestmoment of achievement of my mission inlife 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 2000NASA 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 ofsuccessful transplant operation withmedical staff and organ recipients ofKuala Lumpur Hospital 55
  • 56. 15th Anniversary June 28, 2011With Datuk Dr. Ghazali-Consultant Nephrologist and 56Head of Nephrology Department, Kuala Lumpur Hospital
  • 57. Dialyzing Nurses, Post Transplant Coordinators and Nephrologist 57
  • 58. “You must give something to your fellowmen even if it’s a little thing, somethingfor which you get no pay but the privilegeof doing it” Albert Schweitzer 58 58
  • 59. Chen Hoe Lee:Im so glad to see how healthy you twoare looking! Thanks for keeping me up todate on your progress and on all the workyou do for transplant issues. My family isso happy that my husbands kidneys haveserved you so well!Best wishes, Madge Bender(May 28, 2009) 59
  • 60. Dear Chen:Im so pleased that we were able to makeyour life and your "twins" life longerand happier. Your efforts to maketransplants more common and acceptablein your country and your region arecommendable. Keep up the good workand good luck with it!Best, Madge Bender(May 29, 2009) 60
  • 61. We are always amazed at how much goodyou are able to do! Thanks for keepingme up to date with your activities and Iwill look forward to seeing the SHAREnewsletter.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 CampaignP-A burning passion and love for the jobI-Taking the initiative to strike a conversation onOrgan DonationC-Communicate in the simplest possible languageon the topicT-Take time off from my appointments or workU-Understand from the viewpoint of the other personR-Research on the topic and responsible for my workE-Enjoy the work and ever grateful being given achance in this noble act. Expect nothing in returnS-A sincere and supportive family and derive the 62greatest 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 2003Ms 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 LumpurFamily 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 GamesKobe , Japan – 7-11 Sept 2000 72
  • 73. 73
  • 74. 15th World Transplant Games 16-25 July 2005 City of London, Ontario, CanadaWith Yong Sze Teck-Heart Transplant Recipient after the 5.0 km walk 74
  • 75. World Transplant Games-Gold medalist in Badminton1997-Sydney, Australia1999-Budapest, Hungary2001- Kobe, Japan2003-Nancy, France2005-City of London, CanadaSilver medal2007-Bangkok2009-Gold Coast, Australia 75
  • 76. Achievements of Malaysian Organ Recipients at World Transplant Games Year Venue No. of Achievements Participants1988 Singapore 7 Badminton 3 bronze1991 Budapest Did not participate1993 Vancouver 5 Badminton 1 silver and 1 bronze1995 Manchester 4 Badminton 1 silver1997 Sydney 9 Badminton 4 gold, 2 silver Table Tennis 2 silver1999 Budapest 4 Badminton 3 gold, 3 silver, 1 bronze Table Tennis 1 bronze2001 Kobe 6 Badminton 3 gold, 2 silver Table Tennis 1 silver2003 Nancy 8 Badminton 4 gold, 1 silver, 1 bronze Bowling 1 bronze2005 City of London 10 Badminton 4 gold 1 Silver Table Tennis 1 Bronze2007 Bangkok 9 Badminton 5 Gold 1 Silver 2 bronze Golf 1 Gold Table Tennis 1 Silver 762009 Gold Coast 8 Badminton 2 Gold 3 Silver 1 Bronze Australia Table Tennis 1 Bronze
  • 77. Financial difficulties faced by kidneys failure patients1. 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 /week2. High cost of anti-rejection drugs CELCEPT RM 480/box Tacrolimus or FK 506 - RM 500/box3. Lost of job /income4. 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 SOCSO2. Social Welfare Department• Claimable up to RM 300 /month 78
  • 79. A Conservative Financial work out for CAPD/Transplant OperationAmount (RM) Per Per 5 years 16 years 21 years month yearCAPD 2,500 30,000 150,000 - 150,000Erythropoietin 480 5,760 28,800 - 28,800Transplant in 80,000 - - 80,000 80,000China ( one off)(mid 1990s)Anti rejection 1,500 18,000 - 288,000 288,000drugTotal RM - - 178,800 368,000 546,800 79
  • 80. Dialysis and Kidney Transplant Patients in Malaysia 2000-2010100000 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 LISTUntil 29 February 2012: Kidneys >15,120 patients data provided by e-MOSS Liver ~ 8 adults & 8 paediatrics >25 deaths since 2006 82
  • 83. WAITING LISTUntil 29 February 2012Heart ~ 3 patients >40 deaths since 1995 41% 1-year survival rateHeart-Lungs ~ 3 patients 83 >20 deaths since 2003
  • 84. TRANSPLANTATION IN MALAYSIA 1-Year Survival Total Transplants Organs / Tissues Rate until 2009Renal / Kidneys (since 1975) 95% 1,336Liver (since 1995) 65% 107Heart (since 1997) 59% 20Lungs (since 2005) - 3Heart-Lungs (since 2008) - 1Corneas (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 UnknownGroup years years years years years years years years years yearsNos. 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 2011No 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 UnknownGroup years years years years years years years years years yearsNos. 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 1.2060000 40 Total 151, 525 as at Dec 31, 2010 3550000 3040000 2530000 20 1520000 1010000 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 50.00N 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 80,000N 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, TellDecide, Discuss, Donate 93
  • 94. www.agiftoflife.gov.my03-26810681 / 1800-88-9080 94
  • 95. Don’t take your organs to heavenHeaven knows we need them here 95