This document discusses self-management of chronic kidney disease from the perspective of a patient whose kidney function declined from 100% to 10% over a period of 11 years. It outlines the stages of chronic kidney disease, from being a healthy individual to becoming an emergency patient, chronically ill patient, and pre-dialysis patient. It emphasizes the importance of lifestyle changes, medication adherence, diet, exercise and mental health for self-management of the disease to slow progression and avoid dialysis. Regular communication and education from healthcare providers, as well as a sense of responsibility, empowerment and partnership between patients and doctors, is key to effective self-management.

1. Self-management

3. My perspective

4. My kidney function 0 50 years

5. 1990 2001 100% My kidney function 10% ?

6. 1990 2001 100% My kidney function 10% ? Stupid me

7. Two diseases A kidney carcinoma 10% kidney function

8. Two diseases A kidney carcinoma Nephrectomy 10% kidney function Dialysis

9. Acute Chronic Duration Short For life Goal Well again Not worse Attitude Fight it Accept it Responsible HC staff Shared Treatment HC staff Patient Education None Considerable Life-style As before Changed

10. Acute Chronic Duration Short For life Goal Well again Not worse Attitude Fight it Accept it Responsible HC staff Shared Treatment HC staff Patient Education None Considerable Life-style As before Changed Action Reflection

11. My trauma Healthy individual Emergency patient

12. My trauma Healthy individual Emergency patient Chronically ill patient

13. My trauma Healthy individual Emergency patient Chronically ill patient Pre-dialysis patient

14. Stages of CKD GFR, % Normal function > 90 Mild reduction 90-60 Moderate reduction 60-30 Severe reduction 30-15 Kidney failure < 15

15. Life is wonderful ... considering the alternative

16. Expectations

17. In the 60´s End stage dental disease

18. Prevention Keep clean Use fluoride Regular check-ups

19. 8 760 hours/year

20. 8 760 hours/year - 2 dental office

21. 8 760 hours/year - 2 dental office 8 758 hours/year = my responsibility = self-management, self-care

22. Long term change My parents My generation My children My grandchildren

24. Real health care Prevention Early detection Early life-style change Early treatment Slow or stop progression Replacement

25. Slow or even stop the disease?

26. What can I do MYSELF ?

27. Treatment plan 1. Medication 2. Special diet 3. Healthy life-style

28. Blood pressure Medication

29. Blood pressure Medication Regular physical activity Weight control Stop smoking Less salt, no extra Drink less Stress management Relax and sleep well Get a pet

30. The special diet helps minimize the symptoms and slow the progression + makes me feel in charge keeps my family involved

31. Health behaviour Regular physical activity Blood pressure control Glucose control Weight control No smoking Healthy diet

32. My daily to-do-list Patient Medication Yes Blood pressure Yes Blood sugar Yes Weight control Yes No smoking Yes Physical activity Yes Special diet Yes Mental health Yes

33. My daily to-do-list Patient Doctor Medication Yes Yes Blood pressure Yes Blood sugar Yes Weight control Yes No smoking Yes Physical activity Yes Special diet Yes Mental health Yes

34. Outside the clinic No doctor No nurse No dietician No physiotherapist

35. It´s so obvious: My health is my responsibility My illness is my problem

36. My doctor and all health care staff are my medical advisors

37. To be able to assume Responsibility We need: Good relations Partnership Education

39. Relations Compliance Adherence Empowerment Self-management

40. Em- power -ment The Doctor - Expertise - Integrity - Decisions

41. Em- power -ment The Doctor The Patient - Expertise - Expertise - Integrity - Integrity - Decisions - Decisions

42. Em- power -ment The Doctor The Patient - Expertise - Expertise - Integrity - Integrity - Decisions - Decisions - Mutual respect - Mutual empowerment - Agreements - Partnership

43. Patient information

45. Education Knowledge Learning is more important than teaching

46. Education Knowledge Learning more important than teaching Motivation Enhanced through group discussions

47. Education Knowledge Learning more important than teaching Motivation Enhanced through group discussions Healthy behaviour A process of change

48. Change of behaviour When we are: Ready Convinced Empowered Entrusted Supported

49. 1990 2001 100% My kidney function 10% ?

50. My medication

51. My CKD diet Protein down Energy up Balanced+balancing

52. My healthy life-style

53. The outcome 100% 10% 1990 2001 2007 No dialysis Tolerable symptoms

54. It worked for me ___________________________________ It may work for others ___________________________________ Not for all

55. Gains Me: 6 years of health, freedom The clinic: 15 min/2 months Local gov: Saved €400000 My doctor: My HERO

56. Thank you