my journey with bronchiectasis as a: young maori child and now as a maori woman with a disability

My Journey with My Journey with Bronchiectasis as a:Bronchiectasis as a:

Young Maori Child and now as a Maori Young Maori Child and now as a Maori Woman with a disabilityWoman with a disability

Te wairua and I

Te wairua and Reginald

From back: Dad, From back: Dad, Reginald, Te wairua, Reginald, Te wairua, Mum, Camron, Aura & Mum, Camron, Aura & EstherEsther

WHANAU:WHANAU:

RAUMANGA TE KOHANGA RAUMANGA TE KOHANGA REO:REO:

(4 years of age)(4 years of age)

WHOOPING COUGH:WHOOPING COUGH:

PHYSIOTHERAPHY◦ Wedge◦ ACBT (Active Cycle Breathing Technique)◦ PEP (Positive Expiratory Pressure)

New Methods for Chest Clearance:◦ Long distance Walking◦ Any form of physical Activity that involves

increased breathing is good◦ Clearance Vest

ORAL ANTIBIOTICS

I.V ANTIBIOTICS

NEBULISED ANTIBIOTICS

ORAL SUPPLEMENT DRINKS◦ Ensure Plus◦ Scandishake◦ Multidextrin◦ Fortisip

SURGERIESo I.V’so Picc Lineso Blood Transfusiono Bronchoscopyo Drain Insertiono Porta-cath

insertion

GASTROSTOMY TUBEo Bolus Feedingso Overnight Feedings

Fri 1 Feb Fri 1 Feb ‘13‘13

20122012JULY JULY - FACEBOOK GROUP PAGEFACEBOOK GROUP PAGE

DEC DEC - DRAFT CONSTITUTIONDRAFT CONSTITUTION

20132013JAN JAN - MEETING WITH DR LANCE O’SULLIVANMEETING WITH DR LANCE O’SULLIVAN

JAN JAN - TE KARERE INTERVIEWTE KARERE INTERVIEW

FEB FEB - OUR 1OUR 1stst NORTHLAND BRONCHIECTASIS SUPPORT GROUP MEETING NORTHLAND BRONCHIECTASIS SUPPORT GROUP MEETING

MARCH MARCH - CHARITY FUNDRAISING EVENTCHARITY FUNDRAISING EVENT

APRIL APRIL - MEDICAL DIRECTOR & DIETICIAN ON BOARD MEDICAL DIRECTOR & DIETICIAN ON BOARD

JULY JULY - A WEBSITE A WEBSITE

AUGUST AUGUST - NATIVE AFFAIRS INTERVIEW NATIVE AFFAIRS INTERVIEW

DIETICIAN:Eruera Maxted

Northland District Health BoardWhangarei

E-mail: eruera.maxted@northlanddhb.org.nz

MEDICAL DIRECTOR:Dr Lance O’SullivanTe Kohanga Whakaora ClinicKaitaiaE-mail: lanceo@navilluso.co.nz

FOUNDER & COORDINATOREsther-Jordan MuriwaiE-mail: e-j.m_te_ahumai_wawata@hotmail.com

FACEBOOK:FACEBOOK:https://www.facebook.com/BeronchiectasisSupportGroupNZ

WEBSITE:WEBSITE:http://ejm-te-ahumai-wawata.wix.com/bronchiectasisnz

To create a place for families, siblings, parents, children and individuals affected by this condition “Bronchiectasis” not limiting to “PCD” to seek guidance, resources and initiative to manage their health in the best possible way for “them”.

A place to feel unique and exceptional despite their limitations. We have the Bronx and we are okay with that.

The formation of ‘The Bronchiectasis Foundation of New Zealand’