Welcome to a very special episode of the HeartKids From The Heart. n this episode Rachael chats with Amber Adamson, a dedicated Clinical Nurse Consultant at Prince Charles Hospital, who specialises in Adult Congenital Heart Disease.
Before the episode was recorded, we put out a call on social media for young people and adults to submit questions to be answered on air, and you responded with thoughtful topics and queries about navigating life and healthcare with a heart condition. So, in this episode Amber is here to help, specifically addressing the concerns and questions of young people and adults, sharing her expertise, insights, and advice for managing your healthcare with confidence and independence.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.
For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Amber Adamson
Producer: Becky Oakley
In this episode of "From the Heart," join our host, Sami, for a conversation with Matt Tognini. Matt is the father of a heart kid, Alessandra, who was born with a complex congenital heart condition.
Sami and Matt chat about the impacts of flying across the country for heart surgery, the parent perspective of the process of transition from paediatric care to adult care, and supporting his heart kid adult as she prepares for upcoming surgery.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.
For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Matt Tognini
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Missing School CEO Megan Gilmour.
Sami and Megan chat about the impact of periods of absence from school, for those with critical health concerns. Megan takes us through initiatives that Missing School can put in place, or connections to additional supports, that assist kids who are experiencing loneliness, and gaps in learning while away from the classroom.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.
For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
MISSING SCHOOL
1300 237 234
Children should be seen and heard.
Read more about Missing School and their initiatives at their site https://missingschool.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Megan Gilmour
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with HeartKids CEO Lesley Jordan.
Sami and Lesley chat about congenital heart disease, as well as the term Childhood-onset Heart Disease (CoHD) and what this means. Lesley gives us a quick catch-up on all things CoHD for new listeners, and takes us through some exciting upcoming events.
Be sure to stick around and hear the Love Letters to the CoHD Community segment, where we play your dedications, shout-outs, and anonymous messages of love to those in the community, in acknowledgement of the significant population and unique journeys of those with Childhood-onset Heart Disease.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease.
For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Lesley Jordan
Producer: Melissa Clarke
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #3 - Genetic Counselling with Laura Yeates.
Laura is a cardiac genetic counsellor and current PhD candidate with research projects focusing on inherited cardiomyopathy and arrhythmia. In this episode, Laura talks about what genetic counselling is, who can access it, and how genetic counselling is used to understand more about health conditions, and accessing the right supports around those conditions.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Laura Yeates
Producer: Melissa Clarke, Becky Oakley
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #2 - Matt Nelson's Story
Matt has been touched by childhood heart disease (CHD) as both a husband and a father. Matt’s first wife Tina passed away in 2013 due to complications from hypertrophic cardiomyopathy. Two of Matt’s sons also live with this condition.
In this episode Matt talks about the complexity of navigating diagnoses, bereavement, and the strength of his sons.
Content Warning
This episode contains information about bereavement. Please listen in a safe space and remember you can pause if you need to.
If any of the information about bereavement brings up worry for you, please contact any of the below helplines for support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Matt Nelson
Producer: Isobel Pritchard-Davies, Melissa Clarke
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #1 - Eve's Story
Eve is a 23-year-old from Melbourne who lives with a congenital heart condition. Eve is a keen skier, ice hockey player and cold water swimmer! In this episode, Eve talks about how having a heart condition has impacted her body image and relationship with her body, her journey to becoming more independent with her health care, and the importance of support networks.
LINKS
Join HeartKids' Instagram for teens and young people @youthzone_heartkids: www.instagram.com/youthzone_heartkids
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Eve Alexiadis
Producer: Isobel Pritchard-Davies
In this episode of "From the Heart," join our host, Rachel, for a special conversation with Jaidyn Stephenson, North Melbourne AFL Player, and dedicated HeartKids Ambassador. Rachel and Jaidyn discuss navigating his heart condition and achieving success in his AFL career. Tune in as Jaidyn shares insights into the special bond he has forged with HeartKids.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Jaidyn Stephenson
Producer: Becky Oakley
On this episode of From The Heart, we’re getting to know Monica Tolic – a heart teen from Adelaide who recently finished her last day of high school! With big goals in sight for her future, Rachael chats to Monica about growing up with a heart condition and managing through the highs chool years. Monica shares her thoughts on mental health, creating balance and becoming independent with her heart health.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Monica Tolic
Producer: Becky Oakley
In this episode of From the Heart, we're joined by Elle Pendrick, a HeartKid herself and member of our HeartKids Board. Elle is also the founder of Adulting Well - on a mission to empower and educate people with chronic illnesses. In this episode Elle discusses navigating the financial aspects of living with, or caring for someone, with a childhood heart condition.
For those new to From the Heart we highly recommend you check out an earlier interview we conducted with Elle on preparing for Open Heart Surgery.
For more information and tips, check out Elle's recently released Ultimate Surgery Success Guide.
Content note: This episode provides general ideas for navigating the financial aspects of living with a Childhood Heart Condition in Australia, but it does not provide financial advice. Everybody's situation is unique, so we strongly recommend you get independent financial advice.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Elle Pendrick
Producer: Becky Oakley
In this episode of From the Heart, we're joined by Tess Waterhouse who shares her remarkable journey of receiving a diagnosis of Congenital Heart Disease (CHD) at age 23. Tess shares her experience with open-heart surgery for her atrial septal defect (ASD) and reflects on her recovery process, coping strategies, and the crucial support networks that helped her. She offers valuable insights on self-advocacy and a message of hope and guidance for others facing a similar diagnosis.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Tess Waterhouse
Producer: Becky Oakley
This episode, Sami chats to Dr Gavin Wheaton about Rheumatic Heart Disease, and the Deadly Heart Trek.
Dr Wheaton is a paediatric cardiologist at Adelaide’s Women and Children’s Hospital, and part of the Deadly Heart Trek.
Deadly Heart Trek is a group of experienced doctors, local health workers and aboriginal leaders visiting communities across Australia to diagnose, treat and help prevent RHD, while learning and responding to the needs of communities.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Rheumatic Heart Disease (RHD):
https://www.rhdaustralia.org.au/
Learn more about Deadly Heart Trek:
https://deadlyhearttrek.org/
CREDITS
Host: Sami Glastonbury
Guest: Dr Gavin Wheaton
Producer: Melissa Clarke
This episode, Sami chats to Ellen Mitchell about the impact of becoming a Heart Mum, and how she gives back to the CHD community.
Ellen is the Regional Community Coordinator for HeartKids in South Australia. Through her work, Ellen attends regional cardiac clinics, assists in facilitating community events, connecting peers across South Australia, and supporting the community in innovative ways.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Two Feet and a Heartbeat:
https://www.twofeetheartbeat.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Ellen Mitchell
Producer: Melissa Clarke
This episode, Sami chats to Dr Derek Tran, about exercise physiology, and supporting fitness for those with Congenital or Childhood-Onset Heart Disease (CHD)
Dr Tran is a lecturer at the University of Sydney School of Medicine and Senior Exercise Physiologist at the Department of Cardiology, Royal Prince Alfred Hospital.
Derek is also the co-coordinator of the world’s largest, and most inclusive CHD exercise clinical trials, called CH-FIT – striving to optimise exercise prescription and delivery for those with CHD.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about CH-FIT:
https://www.hri.org.au/our-research/clinical-research/optimising-exercise-prescription-and-delivery-in-congenital-heart-disease-the-congenital-heart-fitness-intervention-trial-ch-fit
CREDITS
Host: Sami Glastonbury
Guest: Dr Derek Tran
Producer: Melissa Clarke
This episode, Tahnee chats with Jayhrani Nicholls, a registered nurse and Aboriginal woman who works at Ngak Min Health, located on the Djarragun College campus in Gordonvale, Queensland. With a passion for empowering individuals to take control of their own health, Jayhrani has been dedicating her skills and expertise to supporting patients with Rheumatic Heart Disease (RHD).
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about RHD:
http://www.rhdaustralia.org.au
CREDITS
Host: Tahnee Jash
Guest: Jayrahni Nicholls
Producer: Becky Oakley, Melissa Clarke
In this episode, Rachael chats with Ahmad, a remarkable 17-year-old who faced a life-saving heart transplant during the pandemic. His journey is a testament to unwavering resilience, overcoming challenges which included a leg amputation in his journey with CHD. Get ready to be inspired by Ahmad's indomitable spirit and unwavering determination to embrace all that life has to offer.
Content note: The content touches on medical procedures and challenges faced. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Ahmad El Haj Youssef
Producer: Becky Oakley
In this episode, Rachael interviews May Chan and Bambang Kurnia, from the Royal Children's Hospital in Melbourne. May is an experienced Clinical Nurse Consultant in Cardiac Surgery, with a tenure at RCH since 1985. Her primary role involves managing and coordinating teams for cardiac surgeries, ensuring the highest standard of care for patients and their families. Joining May is her colleague Bambang Kurnia, an Associate Unit Manager at RCH. Bambang works closely with May in the cardiac theatre team, contributing his expertise to enhance the quality of healthcare provided.
Content note: The content touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guests: May Chan and Bambang Kurnia
Producer: Becky Oakley
In this episode of From the Heart, Rachael Knowles speaks with Syeda Sultana a devoted sibling and steadfast advocate for her brother who sadly passed away in 2022. A passionate advocate for equitable healthcare, Syeda is now an aspiring medical student with a keen interest in congenital heart defects, hoping to one day to make a difference in the field of paediatric cardiology.
Content note: This episode of From the Heart contains discussions of loss and grief related to a congenital heart defect. The content also touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Syeda Sultana
Producer: Becky Oakley
Mel is a project coordinator at HeartKids, as part of the National Action Plan, implemented to reduce the impact of childhood heart disease in Australia and achieve the goal that people with childhood-onset heart disease live longer, healthier and more productive lives.
In this episode, Mel chats about the projects she runs at HeartKids, focusing on increasing support for families online, and over the phone.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Melissa Clarke
Producer: Melissa Clarke, Becky Oakley
Dr Prem is cardiothoracic surgeon based in Queensland, at Queensland Children’s Hospital. He performs lifesaving surgeries on children with CHD, and is involved in cardiac initiatives across the state and overseas.
In this episode, Prem talks about CHD surgery, the close-knit team of professionals he works alongside, and his everlasting bond with each of the children he operates on.
CONTENT WARNING
This episode contains information about surgery.
Please listen in a safe space and remember you can pause if you need to.
If any of the information about surgery brings up worry for you, please contact any of the below helplines for support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Dr Prem Venugopal
Producer: Melissa Clarke, Becky Oakley
Laura is a cardiac genetic counsellor and current PhD candidate with research projects focusing on inherited cardiomyopathy and arrhythmia. In this episode, Laura talks about what genetic counselling is, who can access it, and how genetic counselling is used to understand more about health conditions, and accessing the right supports around those conditions.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Laura Yeates
Producer: Melissa Clarke, Becky Oakley
Marjorie is a Kombumerri woman, who was born with Tetralogy of Fallot, and had surgery at the age of 13, in 1968.
In this episode, Marjorie talks about her surgery, the support available for those in 1968 with CHD, and raising awareness of other adults living with CHD.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
CREDITS
Host: Tahnee Jash
Guest: Marjorie Doyle
Producer: Melissa Clarke
Kenya was diagnosed with a heart condition at the age of 14. In this episode, Kenya talks about travelling for open heart surgery, her connection with her family, and raising awareness of Rheumatic Heart Disease (RHD) through her film making work and Champions 4 Change.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Learn more about RHD:
http://www.rhdaustralia.org.au
Watch Kenya's films about RHD:
Sharing a Heartbeat: A short film about RHD in pregnancy
https://www.youtube.com/watch?v=-DDkFUZTrqs
Sharing A Heartbeat 2
https://www.youtube.com/watch?v=073iA5hwDIE
CREDITS
Host: Tahnee Jash
Guest: Kenya McAdam
Producer: Isobel Pritchard-Davies, Melissa Clarke
Arthur is a dad to a daughter with CHD, and a passionate fundraiser for HeartKids through his workplace. In this episode, Arthur talks about his family’s grassroots fundraising efforts, Greek sweets, and the joy of supporting the heart kids community with scholarships via his workplace, Drake’s Supermarkets.
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Arthur Iliopolous
Producer: Isobel Pritchard-Davies, Melissa Clarke
Catherine is a mother to a 13-year-old with CHD and has worked in the education system for 18 years. In this episode, Catherine talks about children with CHD entering the education system, and the preparations and supports that are beneficial in this space
HEARTKIDS
From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Catherine Day
Producer: Isobel Pritchard-Davies, Melissa Clarke