my journey with bronchiectasis as a: young maori child and now as a maori woman with a disability
TRANSCRIPT
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: [email protected]
MEDICAL DIRECTOR:Dr Lance O’SullivanTe Kohanga Whakaora ClinicKaitaiaE-mail: [email protected]
FOUNDER & COORDINATOREsther-Jordan MuriwaiE-mail: [email protected]
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’