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BRUH ASTHMA SUCKS( FOR REAL )
Tomairangi Pihema-Brown
AROUND 192 HOSPITAL ADMISSIONS
2013
= 20 admissions
2014
= 23 admissions
2015
= 37 admissions
2016
= 31 admissions
2017
= 29 admissions
2018
= 11 admissions
2019
= 14 admissions
2020
= 0 admissions
ASTHMA AND BRONCHIECTASIS
2013 = Diagnosed with bronchiectasis
2014 = died for 11 minutes, in ICU in Starship.
Brain injury and needed 3 months of rehab.
SICK ALL THE TIME
• 2015 : Most admissions.
• Only 46 school days
• Picc line inserted.
• On steroids for the majority of the year.
No one :The daily steroids : 👁👄👁
LOTS GOING ON
• 2016 : Hospital admissions & CAMHS visits
• Bad behaviour
• Got a portacath
• Started the omalizumab injections.
AND MORE SICKNESS
• 2017 : My best year.
• 2018 : Pretty hard year.
• chronic fatigue syndrome.
• anemia, chest infections,
• extremely sad all the time.
LAST YEAR
• 2019 : a few ED attendances
• Less steroids
• Omalizumab injections continued
• Life threatening asthma attack
• ICU at Waikato Hospital
0
5
10
15
20
25
30
35
40
2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020
Num
ber
of a
dmis
sion
s
My Number of Hospital Admissions - yearly
Started Omalizumab
Started Vannair
No ED presentations or hospital
admissions for my asthma
since I started on Vannair
• Omalizumab gave me my quality of life back. • Māori rangatahi like me need these injections early. • For omalizumab I had to wait for over a year before it was approved. • I had to be on the maximum amount of preventors, lots of steroids, lots of
hospital admissions and be really sick to ‘prove’ that I needed it. • It was like I had to get sicker in order to get better. • That time was really stressful and scary for me and my whanau. • We needed counselling and my mum had to finish full time work to look after
me. Once the injections started though I was much better. • Vannair has improved my asthma control heaps. • But why did I have to wait until another life threatening attack, intubation and
ICU stay at Waikato to be prescribed it?
WHAT HAS HELPED
WHAT THE DOCS COULD DO BETTER
• Make it easier for patients to understand what’s wrong.
• I know it’s complicated, but please don’t just go my numbers.
• Be flexible in how you look at my health conditions. Sometimes I need you to take a wider view because sometimes it’s all linked (eg my fatigue)
• Sometimes it feels like the doctors and nurses are scared of me because of my history.
• Listen a little bit more.
WHAT MY LIFE IS LIKE NOW
• I volunteer every Saturday morning at our local SPCA Op Shop. I really enjoy this work. It feels good to have a purpose.
• Since 2013 I have competed at six Waka Ama National Champs held every year at Lake Karapiro. I haven’t been able to compete since I was diagnosed with chronic fatigue.
• In 2019, I won a rangatahi scholarship to attend a Māori writers workshop.
• I have my learners licence and am learning to drive which is pretty cool. My goal is to get my restricted licence.
• I’ll be finishing school next month.
