Self-management

My perspective

My kidney functionMy kidney function

0 50 years

1990 2001

100%

My kidney function

10%

?

1990 2001

100%

My kidney function

10%

?

Stupid me

Two diseasesTwo diseases

A kidney carcinomaA kidney carcinoma

10% kidney function10% kidney function

Two diseasesTwo diseases

A kidney carcinomaA kidney carcinoma- NephrectomyNephrectomy

10% kidney function10% kidney function- DialysisDialysis

AcuteAcute ChronicChronicDurationDuration ShortShort For lifeFor life

GoalGoal Well againWell again Not worseNot worse

AttitudeAttitude Fight itFight it Accept itAccept it

Responsible Responsible HC staffHC staff SharedShared

TreatmentTreatment HC staffHC staff PatientPatient

EducationEducation NoneNone ConsiderableConsiderable

Life-styleLife-styleAs beforeAs before ChangedChanged

AcuteAcute ChronicChronicDurationDuration ShortShort For lifeFor life

GoalGoal Well againWell again Not worseNot worse

AttitudeAttitude Fight itFight it Accept itAccept it

Responsible Responsible HC staffHC staff SharedShared

TreatmentTreatment HC staffHC staff PatientPatient

EducationEducation NoneNone ConsiderableConsiderable

Life-styleLife-styleAs beforeAs before ChangedChanged

ActionAction ReflectionReflection

My traumaMy trauma

Healthy individualHealthy individual

Emergency patientEmergency patient

My traumaMy trauma

Healthy individualHealthy individual

Emergency patientEmergency patient

Chronically ill patientChronically ill patient

My traumaMy trauma

Healthy individualHealthy individual

Emergency patientEmergency patient

Chronically ill patientChronically ill patient

Pre-dialysis patientPre-dialysis patient

Stages of CKDStages of CKD

GFR, %GFR, %

1.1. Normal function > 90Normal function > 90

2.2. Mild reduction 90-60Mild reduction 90-60

3.3. Moderate reduction 60-30Moderate reduction 60-30

4.4. Severe reduction 30-15Severe reduction 30-15

5.5. Kidney failureKidney failure < 15 < 15

Life is wonderful

... considering the alternative

Expectations

In the 60´sIn the 60´s

End stageEnd stage

dental diseasedental disease

PreventionPrevention

Keep cleanKeep clean

Use fluorideUse fluoride Regular check-upsRegular check-ups

8 7608 760 hours/yearhours/year

8 7608 760 hours/yearhours/year

- 2- 2 dental officedental office

8 7608 760 hours/yearhours/year

- 2- 2 dental officedental office

8 7588 758 hours/year hours/year

= my responsibility= my responsibility

= self-management, self-care= self-management, self-care

Long term changeLong term change

My parents My parents My generationMy generation

My childrenMy children My grandchildrenMy grandchildren

Real health careReal health care

PreventionPrevention Early detectionEarly detection

Early life-style changeEarly life-style change Early treatmentEarly treatment

Slow or stop progressionSlow or stop progression ReplacementReplacement

Slow or even stop the disease?

What What can I do can I do

MYSELF MYSELF ??

Treatment planTreatment plan

1. Medication1. Medication

2. Special diet2. Special diet

3. Healthy life-style3. Healthy life-style

Blood pressureBlood pressure MedicationMedication

Blood pressureBlood pressure MedicationMedication

Regular physical activityRegular physical activity Weight controlWeight control Stop smokingStop smoking

Less salt, no extraLess salt, no extra Drink lessDrink less

Stress managementStress management Relax and sleep wellRelax and sleep well

Get a petGet a pet

The special dietThe special diet

helps minimize the helps minimize the symptoms and slow the symptoms and slow the

progression progression

++ makes me feel in chargemakes me feel in charge

keeps my family involvedkeeps my family involved

Health behaviourHealth behaviour

Regular physical activityRegular physical activity Blood pressure controlBlood pressure control

Glucose controlGlucose control Weight controlWeight control

No smokingNo smoking Healthy dietHealthy diet

My daily to-do-list My daily to-do-list PatientPatient

MedicationMedication YesYes

Blood pressureBlood pressure YesYes

Blood sugarBlood sugar YesYes

Weight controlWeight control YesYes

No smokingNo smoking YesYes

Physical activityPhysical activity YesYes

Special dietSpecial diet YesYes

Mental healthMental health Yes Yes

My daily to-do-listMy daily to-do-list PatientPatient

DoctorDoctor

MedicationMedication YesYes YesYes

Blood pressureBlood pressure YesYes

Blood sugarBlood sugar YesYes

Weight controlWeight control Yes Yes

No smokingNo smoking Yes Yes

Physical activityPhysical activity Yes Yes

Special dietSpecial diet Yes Yes

Mental health Yes Mental health Yes

Outside the Outside the clinicclinic

No doctorNo doctor No nurseNo nurse

No dieticianNo dietician No physiotherapistNo physiotherapist

It´s so obvious:It´s so obvious:

MyMy health is health ismymy responsibility responsibility

MyMy illness is illness is mymy problem problem

My doctor andMy doctor and

all health care staffall health care staff

are myare my

medical advisorsmedical advisors

To be able to assumeTo be able to assume

ResponsibilityResponsibility

We need:We need:

Good relationsGood relations

PartnershipPartnership

EducationEducation

RelationsRelations

ComplianceCompliance AdherenceAdherence

EmpowermentEmpowerment Self-managementSelf-management

Em-Em-powerpower-ment-ment

The DoctorThe Doctor- Expertise- Expertise

- Integrity- Integrity

- Decisions- Decisions

Em-Em-powerpower-ment-ment

The DoctorThe Doctor The The PatientPatient

- Expertise- Expertise - Expertise- Expertise

- Integrity- Integrity - Integrity- Integrity

- Decisions- Decisions - Decisions- Decisions

Em-Em-powerpower-ment-ment

The DoctorThe Doctor The PatientThe Patient- Expertise- Expertise - Expertise- Expertise

- Integrity- Integrity - Integrity- Integrity

- Decisions- Decisions - Decisions- Decisions

- Mutual respect- Mutual respect

- Mutual empowerment- Mutual empowerment

- Agreements- Agreements

- Partnership- Partnership

Patient information

EducationEducation

KnowledgeKnowledge Learning is more important than teachingLearning is more important than teaching

EducationEducation

KnowledgeKnowledge Learning more important than teachingLearning more important than teaching

MotivationMotivationEnhanced through group discussionsEnhanced through group discussions

EducationEducation

KnowledgeKnowledge Learning more important than teachingLearning more important than teaching

MotivationMotivation

Enhanced through group discussionsEnhanced through group discussions

Healthy behaviourHealthy behaviour

A process of changeA process of change

Change of behaviourChange of behaviourWhen we are:When we are:

ReadyReady ConvincedConvinced

EmpoweredEmpowered EntrustedEntrusted SupportedSupported

1990 2001

100%

My kidney function

10%

?

My medication

My CKD diet

Protein downEnergy up

Balanced+balancing

My healthy My healthy

life-stylelife-style

The outcome The outcome 100%

10%

1990 2001 2007

No dialysisTolerable symptoms

It worked for meIt worked for me______________________________________________________________________

It may workIt may work

for othersfor others______________________________________________________________________

Not for allNot for all

GainsGains

Me:Me: 6 years of health, freedom 6 years of health, freedom

The clinic:The clinic: 15 min/2 months 15 min/2 months

Local gov:Local gov: Saved €400000 Saved €400000

My doctor:My doctor: My My HEROHERO

Thank you