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What Every Kidney Recipient Should Know
      Sunday, September 11, 2011




             Lee Chen Hoe
    Deceased Donor Transplant Recipient
          Kuala Lumpur Hospital
               July 27, 1996




                                          1
My loving twin girls




                       2
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 my
journey of 60 km to work
-To put up with unfriendly and hostile remarks
-A strong determination to pull through               3
Wai Tan Kung Exercise




                        4
My Preparation for Transplant Operation

-Signing up for the Waiting List
-A Positive mind set
-Walking exercise
-Practice of Wai-tan-kung tai chi exercise to stay healthy
-Closely followed my dedicated CAPD nurse’s advice
-Had my teeth checked by the dentist to prevent infection
-Resourceful on pre and post transplant care
-Emotionally, mentally, physically and psychologically
prepared for the transplant operation
                                                             5
Post Transplant Operation
The success rate of transplant operation in
Malaysia is 90+ %, compatible to any part of the
world
-You will be back to normal
-No need to stick to Haemodialysis /CAPD schedule
-Sexual life
Can start 3 or 4 weeks post transplant operation
when the site of the wound is alright


                                                    6
Post Transplant Operation
-You will be placed in the Intensive Care Unit
-Transfer to a Single Occupant Quarantine Room for about
two weeks
-Follow closely to the heavy dosage of anti rejection
immunosuppressive drugs
e.g. Cyclosporine, Tacrolimus, Mycophenolate,
Prednisolone, Azathioprine (Imuran) Twice daily
-Hypertensive drugs e.g. amlodipine, Atenolol,
-Cholesterol drugs e.g. lovastatin
-Store medicine in cool and dry place away from children
- Be wary of the expiry date of the drugs
                                                           7
Post Transplantation Operation
Medical Follow up with Kuala Lumpur Hospital
-Ultrasound or Computerized Topography (CT)
Scan
-Nuclear Magnetic Resonance (NMR), if necessary
Doctor will prescribe 2 to 3 months of medical leave
for you to recuperate after the transplant operation




                                                   8
Post Transplantation Operation
Medical Follow up with Kuala Lumpur Hospital
Blood Test
-Urea (1.7-8.3 mmol/l)
-Sodium (125-145 mmol/l)
-Potassium (3.5-5.0 mmol/l)
-Creatinine Level (65-122 mmol/l)
-Uric Acid ( Male 202-416 µmol/l)
             Female 142-239 µmol/l)
-Urine Test ( Free of albumin)
                                                                  9
       (Source: Nephrology Department of Kuala Lumpur Hospital)
Post Transplantation Operation
-Meet the Dietician
-Stay in touch with the Transplant Coordinator
-Observant of any bodily changes for the first six (6) months
caused by the immunosuppressive drugs
e.g. Cyclosporine will cause
-Moon Face
-Hairy body/ Ladies will start to grow moustache
-Pimples
-Will put on for a few kilos of bodily weight
-Temperamental/Emotional caused by Prednisolone
                                                           10
-Drink at least 3-5 litres of water during the initial
Post Transplant Operation

Signs of graft rejection
-Fever
-Pain or swelling in the graft area
-Less urine output
-Report immediately to our “Holiday Resort”
-Creatinine level will increase from the normal
level to ≥ 200 mmol/l

                                              11
Post Transplant Operation

Three types of graft rejection
-Hyperacute rejection occurs within first 24
hours of transplantation
-Acute Rejections occurs first few weeks or
months after transplantation
-Chronic Rejection



                                               12
Post Transplant Operation


Administer of Medication for rejection
-Intravenous Methylprednisolone
-Change anti rejection drugs
e.g. FK506
-ATGAM/Thymoglobilin-Very costly drugs
10 – 14 injections

                                         13
Post Transplant Operation
Precautionary Measures to take
-Wear a face mask during the initial first 3 to 4 weeks
when going out
- Do not go to crowded places
-Keep away from pets
--Keep away from people who have a cough or fever
--Keep away from family members who have
chickenpox or measles
-No taking of herbs or direct sales stuff
-Don’t be your own doctor, i.e. subtracting the drugs
                                                    14
How I look before and after Kidney Transplant Operation




Pre Kidney Transplant-1994     Post Kidney Transplant – 1999
                                                               15
       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
                 My Creatinine Level Pre and Post Transplant Operation
1800

1600

1400

1200
                      941
1000

 800

 600                                451

 400                                                264
                                                                214
 200

   0
                                                                          16
       'Jul 27       'Jul 28        'Jul 29         'Jul30      'Jul 31
My Twin Brother-Mohd Azizi
     Sharing the same organ donor (July 27, 1996)
June 10, 2000                       May 27, 2009




                                                    17
CONTROL YOUR DIET!!!




                       18
My Twin Brother-Mohd Azizi
Sharing the same organ donor (July 27, 1996)

            June 28, 2011




                                               19
My Post Transplantation Self Care




                                    20
My Post Transplantation Self Care

1. Regular medical follow up in Kuala Lumpur
   Hospital
2. Look at life differently and positively
3. Consume 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 drinking
7. Leading an absolutely normal quality of life       21
MBA Graduation- August 2, 1999



                  Continue education to
                  enhance your market
                  values by returning to
                  university
                  With my mother at the
                  Universiti Putra
                  Malaysia



                                           22
Or…
-Start your own business so that you are
financially independent
e.g. Insurance agent, unit trust, will writing
-Start your own family
-Ladies need to discuss with the doctors should
they decide to conceive a child




                                                  23
I am Grateful:
-Thankful to the donor family
-The doctors and medical staffs of
Kuala Lumpur Hospital
-My parents, my wife, my twins and
siblings
-Involve in Organ donation awareness
campaign                             24
Many organ recipients take things for
granted and never say a word of thanks
to the DONOR family !
The Transplant Coordinator got to
purchase a Thank You card as if it was
from the recipient and send to the donor
family as appreciative of their noble and
altruistic act of organ donation, the Gift
of Life!                                25
Don’t ever forget that….


No Donor=No Organ=No Transplant




                             26
“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



                                         27
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)
                                         28
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)
                                       29
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-March 15, 2008


                                                      30
Nephrologist


                                Dr. CC Tan

                                Consultant
                                Nephrologist
                                Head of Nephrology
                                Department
                                Hospital Tengku Ampuan
                                Rahimah
                                Klang

NKF Kidney Walk-March 15,2008

                                                   31
32

July 24, 2010
Had it not due my twins in giving me the
motivational inspiration to courageously drive
on plus a shower of medical care and touch
from Dato Dr. Zaki Morad, 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 and achievement of
my mission in life
                                           33
10th Anniversary
 July 27, 2006




             34
Celebrating my 10th Anniversary of
successful transplant operation with
medical staff and organ recipients of
Kuala Lumpur Hospital




                                  35
15th Anniversary
                     June 28, 2011




With Datuk Dr. Ghazali-Consultant Nephrologist and
                                                       36
Head of Nephrology Department, Kuala Lumpur Hospital
Dialyzing Nurses, Post Transplant Coordinators and Nephrologist




                                                                  37
Epcot Centre Florida-July 27, 2000




NASA Kennedy Space Centre




                                                         38
1. Carry more than enough medication that you need
   during long distance travel or holidays
2. Carry your medicine prescription booklet with you
   or a doctor’s letter stating your dosage in the event
   there is immigration or custom checks
3. Carry two (2) sets of medicine - one set kept in the
   check in luggage and another in hand luggage, or
   ask travel partner to carry one (1) set
4. A list of Healthcare providers and contact nos.
5. Ask the doctors for a short supply of antibiotics,
   e.g. diarrhea, nausea, giddiness
             (Reference: Roche Pharmaceuticals)
                                                        39
6. Drink your own boiled water and lots of it
7. Keep your watch at home time if you are traveling
   to countries of different time zones
8. Carry your insurance card with you
9. Have your blood test check one (1) week or so before
   your travel
10. Upon return, take a rest for a few days before
  going for a blood test because you would be
  dehydrated during travel.
11.Use sun block for out doors activities
- Our risks of contracting cancer is 5 x higher than
  that of a normal person                              40
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.


                                            41
Be There for the newly diagnosed patients-

                              Prof. Masuri Othman of UKM-Feb.     27, 2003




Ms Marzianna wanted to donate a kidney
     to her 8 years old daughter-
          December 5, 2009
                                                                       42
4th Malaysian Transplant Games-June 25, 2006




                                               43
44
KAS-NKF-Rotary Dialysis Unit-
   Kuching May 25, 2009




                                    March 11, 2011
                                     Kota Kinabalu




                                Bintulu Rotary Club-
                                  October 31, 2008     45
46
47
I always have these PICTURES in me whenever 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
                                                        48
greatest satisfaction for the work done as it saves lives
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

                              49
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                       50

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What every kidney recipient should know

  • 1. What Every Kidney Recipient Should Know Sunday, September 11, 2011 Lee Chen Hoe Deceased Donor Transplant Recipient Kuala Lumpur Hospital July 27, 1996 1
  • 2. My loving twin girls 2
  • 3. 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 my journey of 60 km to work -To put up with unfriendly and hostile remarks -A strong determination to pull through 3
  • 4. Wai Tan Kung Exercise 4
  • 5. My Preparation for Transplant Operation -Signing up for the Waiting List -A Positive mind set -Walking exercise -Practice of Wai-tan-kung tai chi exercise to stay healthy -Closely followed my dedicated CAPD nurse’s advice -Had my teeth checked by the dentist to prevent infection -Resourceful on pre and post transplant care -Emotionally, mentally, physically and psychologically prepared for the transplant operation 5
  • 6. Post Transplant Operation The success rate of transplant operation in Malaysia is 90+ %, compatible to any part of the world -You will be back to normal -No need to stick to Haemodialysis /CAPD schedule -Sexual life Can start 3 or 4 weeks post transplant operation when the site of the wound is alright 6
  • 7. Post Transplant Operation -You will be placed in the Intensive Care Unit -Transfer to a Single Occupant Quarantine Room for about two weeks -Follow closely to the heavy dosage of anti rejection immunosuppressive drugs e.g. Cyclosporine, Tacrolimus, Mycophenolate, Prednisolone, Azathioprine (Imuran) Twice daily -Hypertensive drugs e.g. amlodipine, Atenolol, -Cholesterol drugs e.g. lovastatin -Store medicine in cool and dry place away from children - Be wary of the expiry date of the drugs 7
  • 8. Post Transplantation Operation Medical Follow up with Kuala Lumpur Hospital -Ultrasound or Computerized Topography (CT) Scan -Nuclear Magnetic Resonance (NMR), if necessary Doctor will prescribe 2 to 3 months of medical leave for you to recuperate after the transplant operation 8
  • 9. Post Transplantation Operation Medical Follow up with Kuala Lumpur Hospital Blood Test -Urea (1.7-8.3 mmol/l) -Sodium (125-145 mmol/l) -Potassium (3.5-5.0 mmol/l) -Creatinine Level (65-122 mmol/l) -Uric Acid ( Male 202-416 µmol/l) Female 142-239 µmol/l) -Urine Test ( Free of albumin) 9 (Source: Nephrology Department of Kuala Lumpur Hospital)
  • 10. Post Transplantation Operation -Meet the Dietician -Stay in touch with the Transplant Coordinator -Observant of any bodily changes for the first six (6) months caused by the immunosuppressive drugs e.g. Cyclosporine will cause -Moon Face -Hairy body/ Ladies will start to grow moustache -Pimples -Will put on for a few kilos of bodily weight -Temperamental/Emotional caused by Prednisolone 10 -Drink at least 3-5 litres of water during the initial
  • 11. Post Transplant Operation Signs of graft rejection -Fever -Pain or swelling in the graft area -Less urine output -Report immediately to our “Holiday Resort” -Creatinine level will increase from the normal level to ≥ 200 mmol/l 11
  • 12. Post Transplant Operation Three types of graft rejection -Hyperacute rejection occurs within first 24 hours of transplantation -Acute Rejections occurs first few weeks or months after transplantation -Chronic Rejection 12
  • 13. Post Transplant Operation Administer of Medication for rejection -Intravenous Methylprednisolone -Change anti rejection drugs e.g. FK506 -ATGAM/Thymoglobilin-Very costly drugs 10 – 14 injections 13
  • 14. Post Transplant Operation Precautionary Measures to take -Wear a face mask during the initial first 3 to 4 weeks when going out - Do not go to crowded places -Keep away from pets --Keep away from people who have a cough or fever --Keep away from family members who have chickenpox or measles -No taking of herbs or direct sales stuff -Don’t be your own doctor, i.e. subtracting the drugs 14
  • 15. How I look before and after Kidney Transplant Operation Pre Kidney Transplant-1994 Post Kidney Transplant – 1999 15 Hb 7+gm/dl Hb 13+gm/dl
  • 16. Year 1996 Jul 27 Jul 28 Jul 29 Jul 30 Jul 31 Creatinine 1900 941 451 264 214 2000 1900 My Creatinine Level Pre and Post Transplant Operation 1800 1600 1400 1200 941 1000 800 600 451 400 264 214 200 0 16 'Jul 27 'Jul 28 'Jul 29 'Jul30 'Jul 31
  • 17. My Twin Brother-Mohd Azizi Sharing the same organ donor (July 27, 1996) June 10, 2000 May 27, 2009 17
  • 19. My Twin Brother-Mohd Azizi Sharing the same organ donor (July 27, 1996) June 28, 2011 19
  • 20. My Post Transplantation Self Care 20
  • 21. My Post Transplantation Self Care 1. Regular medical follow up in Kuala Lumpur Hospital 2. Look at life differently and positively 3. Consume 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 drinking 7. Leading an absolutely normal quality of life 21
  • 22. MBA Graduation- August 2, 1999 Continue education to enhance your market values by returning to university With my mother at the Universiti Putra Malaysia 22
  • 23. Or… -Start your own business so that you are financially independent e.g. Insurance agent, unit trust, will writing -Start your own family -Ladies need to discuss with the doctors should they decide to conceive a child 23
  • 24. I am Grateful: -Thankful to the donor family -The doctors and medical staffs of Kuala Lumpur Hospital -My parents, my wife, my twins and siblings -Involve in Organ donation awareness campaign 24
  • 25. Many organ recipients take things for granted and never say a word of thanks to the DONOR family ! The Transplant Coordinator got to purchase a Thank You card as if it was from the recipient and send to the donor family as appreciative of their noble and altruistic act of organ donation, the Gift of Life! 25
  • 26. Don’t ever forget that…. No Donor=No Organ=No Transplant 26
  • 27. “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 27
  • 28. 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) 28
  • 29. 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) 29
  • 30. 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-March 15, 2008 30
  • 31. Nephrologist Dr. CC Tan Consultant Nephrologist Head of Nephrology Department Hospital Tengku Ampuan Rahimah Klang NKF Kidney Walk-March 15,2008 31
  • 33. Had it not due my twins in giving me the motivational inspiration to courageously drive on plus a shower of medical care and touch from Dato Dr. Zaki Morad, 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 and achievement of my mission in life 33
  • 34. 10th Anniversary July 27, 2006 34
  • 35. Celebrating my 10th Anniversary of successful transplant operation with medical staff and organ recipients of Kuala Lumpur Hospital 35
  • 36. 15th Anniversary June 28, 2011 With Datuk Dr. Ghazali-Consultant Nephrologist and 36 Head of Nephrology Department, Kuala Lumpur Hospital
  • 37. Dialyzing Nurses, Post Transplant Coordinators and Nephrologist 37
  • 38. Epcot Centre Florida-July 27, 2000 NASA Kennedy Space Centre 38
  • 39. 1. Carry more than enough medication that you need during long distance travel or holidays 2. Carry your medicine prescription booklet with you or a doctor’s letter stating your dosage in the event there is immigration or custom checks 3. Carry two (2) sets of medicine - one set kept in the check in luggage and another in hand luggage, or ask travel partner to carry one (1) set 4. A list of Healthcare providers and contact nos. 5. Ask the doctors for a short supply of antibiotics, e.g. diarrhea, nausea, giddiness (Reference: Roche Pharmaceuticals) 39
  • 40. 6. Drink your own boiled water and lots of it 7. Keep your watch at home time if you are traveling to countries of different time zones 8. Carry your insurance card with you 9. Have your blood test check one (1) week or so before your travel 10. Upon return, take a rest for a few days before going for a blood test because you would be dehydrated during travel. 11.Use sun block for out doors activities - Our risks of contracting cancer is 5 x higher than that of a normal person 40
  • 41. 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. 41
  • 42. Be There for the newly diagnosed patients- Prof. Masuri Othman of UKM-Feb. 27, 2003 Ms Marzianna wanted to donate a kidney to her 8 years old daughter- December 5, 2009 42
  • 43. 4th Malaysian Transplant Games-June 25, 2006 43
  • 44. 44
  • 45. KAS-NKF-Rotary Dialysis Unit- Kuching May 25, 2009 March 11, 2011 Kota Kinabalu Bintulu Rotary Club- October 31, 2008 45
  • 46. 46
  • 47. 47
  • 48. I always have these PICTURES in me whenever 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 48 greatest satisfaction for the work done as it saves lives
  • 49. 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 49
  • 50. 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 50