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Scott on fatherhood and CF In this episode of the CFStrong podcast, we speak with Scott about being a dad, his journey to fatherhood and his advice for others thinking about having a family of their own. This podcast was published in June 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our listeners. 

Alex on parenting and CF This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. Dive into the second chapter to “It Takes a Village” with Alex and Dr Benda Button. Alex once again shares with sensational vulnerability, courage and honesty her journey being a mum. Alex has amazing insight, and she has learnt over time, and with reflection the importance of prioritising her oxygen first when parenting. ”You can't compare yourself to other parents who don't live with a chronic illness because it's such a different experience. —Alex ”I absolutely love being a mother, but I really need to have that balance of being both. I feel happiest when I am a parent, but I'm also working. —Alex Transcript Jen Hauser: Hello, and welcome to the CFPhysio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I'm a physiotherapist with almost 20 years' experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong, we have joined forces to bring to the CF community real life insights and personal experiences on all things physiotherapy and CF.  CFPhysio.com is a not-for-profit organisation striving to deliver evidence-based education in CF physiotherapy management to healthcare workers and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF through the sharing of individual's personal journeys of living with CF. We hope you find some value from listening to the podcasts we bring to you in this series. Please remember the content is not intended to replace your usual healthcare. Please discuss any concerns or questions you may have with your healthcare team.   It is my great pleasure to have Alex and Brenda back in the studio today. Alex shared with us earlier in the year her journey with family planning and pregnancy and CF and how this impacted or changed her physiotherapy regime for her. And today she's chatting with Dr. Brenda Button, esteemed specialist physiotherapist, who has worked across the lifespan in CF. And they'll continue to talk with Alex about the journey through to kindergarten and life with Ruby. So, Brenda and Alex, it's fantastic to have you back again today and I'll hand over to you guys.  Brenda Button: Thank you, Alex, for coming along and let's start off talking about the newborn period. If you want to tell us all the details around how that was for you.  Alex: Yeah, sure. So, as I mentioned in the last podcast, I had a really fantastic pregnancy and I thought that I was very prepared for the newborn stage and it was very shocking, I think, to say the least. So obviously, I was so delighted to have a healthy baby and I had a really good labour, but I think I wasn't prepared firstly, to be, I guess, a patient while also becoming a mother.   Obviously, we know that that happens after labour that you're not just going to remarkably bounce back and be fine, but I really struggled with just the physicality of birth. I guess like the pain of it and then the shock of then having to look after somebody else and having to sort of manage the needs of my CF and then also the changes of my body from birth and then also on top of that, look after another human being. And I think, I don't know whether any amount of listening or reading can ever prepare you for that until you actually go through it.   But yes,

James on staying active and sharing his CF story In this episode of the CFStrong podcast we speak with James about growing up with four brothers, keeping active and playing sport and what helped him to open up about and share his CF story with his teammates.   "I kept it a secret, you know, as much as I could from pretty well most people... But then when I got towards 27 I started slowing down a bit more again. And that's when I started to open up... It actually worked out pretty well. And I do probably wish I probably did say it a bit earlier because you should let other people know and things like that because the support you get from them is absolutely amazing." —James Transcript Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends, and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health.    Sam: So, my name is Sam and today I'll be your host and with me today is James who is sharing his CF story and challenges it presented. James stayed fit and healthy through his life by playing sports and keeping physically active. So, James would like to tell us a bit about yourself.  James: Thanks, mate. Happy to be here. Yeah, so 31 years old. Electrician, currently with my own business. Three older brothers. My second oldest brother actually has CF as well. But yeah, I've played footy, cricket, all that sort of stuff. I mean, I'm the youngest of four. So, by the time I was born, my oldest brother was already playing under 9s footy. So, I was, I was born with you know, with a footy in my hand you know, tennis racquet, cricket bat and everything like that. So, yeah, I played footy a lot of my life and sports and yeah, I guess that's sort of what, what's helped me along the way, but I thought I'd jump on board here now that I've got to a little bit older and share some of my stories.  Sam: Yeah, excellent. So, you were saying the youngest of four?   James: Correct.   Sam: And which brother has cystic fibrosis?  James: The second oldest one.   Sam: Yeah. Okay.   James: Yes. Scotty my other brother who's, he's turning 40, the big fossil is turning 40 this year and Jase is 39 so one year below that.   Sam: Yeah.  James: And then there's another brother in between there, Adam and myself.   Sam: Yeah, cool. Okay.   James: So poor mom. She had four boys.   Sam: Yeah. Yeah, that can be a challenge. I'm one of four as well.   James: Oh right.   Sam: So just at the, just want to start at the beginning. So what are your main motivations to get into sport because as someone being born with CF, especially as a parent, I'm sure they can be quite hesitant to let you like, let their child go out into the sporting world because they're unsure about how the CF will impact them and stuff like that. So what was your main motivations and how did you really get thrown ...

Alex on pregnancy and parenthood This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. Take a journey with Alex, as she shares her experience with Dr Brenda Button of planning, preparing and embarking on pregnancy with CF. Alex is a talented photographer, partner, mother, and strong advocate for her healthcare. This podcast provides insight on so many aspects of living with CF, with the key message: rally your team, create your village, and live the life you maybe never dreamed of. ”...what I would say, if someone was thinking about falling pregnant, is just make sure you've got that really solid routine and feel in control, I guess as much as you can with CF, because it loves to do what it wants to do sometimes. But if you can do everything you can in your power to keep well, that's pretty much your best bet at having a good and safe pregnancy... —Alex ”I'm not a master of the juggle and I've sort of learned over the years that it is a bit more of a tilt rather than a juggle. So when work is busy, sometimes I will tilt towards a lot of my energy is going towards work. And then when work isn't as busy, I spend a lot of time just really boosting my health up and trying to make sure I can get as well as possible. —Alex Transcript   Jen: Hello, and welcome to the CFPhysio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I'm a physiotherapist with almost 20 years of experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong, we have joined forces to bring to the CF community real life insights and personal experiences on all things, physiotherapy.   CFPhysio.com is a not-for-profit organisation, striving to deliver evidence-based education in CF physiotherapy management to healthcare workers and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF through the sharing of individual personal journeys of living with CF. We hope you find some value from listening to the podcast we bring to you in this series. Please remember the content is not intended to replace your usual healthcare. Please discuss any concerns or questions you may have with your healthcare team.   Today I am really, really privileged to have Brenda Button an experienced CF physiotherapist with three decades working with children and adults with CF, who is currently at the Alfred Hospital with me today and also Alex, a photographer living in Melbourne and a mother of one and an individual with CF. Over to you, Brenda and Alex, really looking forward to hearing your journey, Alex.  Brenda: Thank you very much, Jen. Thank you for our introduction and for this opportunity for Alex and I to talk to you today about a really important topic that's become more and more of interest as everybody with CF has become much more healthy in later decades. So, Alex over to would you like to give us a little potted of your life from when you were diagnosed through your early childhood up to where you are now just in terms of your health?  Alex: Yeah, sure. Thanks for having me, Brenda. So, my name's Alex, I'm 32 years old. I was diagnosed at six weeks old on the heal prick test and I was a fairly well baby and child had a very good and healthy childhood. My mum worked very diligently to keep on top of lots of physiotherapy and exercise and lots of appointmen...

Amanda on why asking for help makes you strong In this episode of the CFStrong podcast we hear from Amanda about her experience living with CF. Amanda discusses what she is most proud of, the importance of the CF community and the challenges of losing friends with CF. She talks about the value of being ok with not being ok and why you should ask for help when you need it. This is the second episode of our two-episode chat with Amanda. “…the help is there. But you've got to ask, and it's not—you don't look weak, you don't look sick, if you ask for it. You actually look strong, you know, and… I find myself so proud of myself when I have put up my hand and say, hey, I need help. You know, that's something that I, I struggle with, I still do. But I'm proud when I do it. And I think that's you know, that's massive.” —Amanda Transcript Voiceover: This is the second episode of our two-episode chat with Amanda. If you haven't already listened to the first episode, we encourage you to go back and do so before jumping into this one.    Deidre Gorrie: Hi everyone and welcome to the CF strong podcast. My name is Deidre Gorrie, and I'm the programs and support services manager for cystic fibrosis community care in New South Wales. I am in the incredibly fortunate position of being able to chat with some of the most amazing adults living with cystic fibrosis from around Australia for the CF strong podcast series. The CF strong podcast series covers a broad range of topics including the challenges and successes of those living with cystic fibrosis, where you will hear real firsthand experiences and stories.     Deidre: Hi, everyone, today we are very fortunate to have Amanda joining us. Amanda is going to chat with us and share a glimpse into her life. Welcome to CFStrong Amanda, would you like to say a few words to introduce yourself to our lovely listeners today?  Amanda: Thank you so much, Deirdre. Thanks for having me on, I’m really excited. My name is Amanda. I am based in Brisbane, Queensland. I'm 28 currently when we're doing this. I have cystic fibrosis, obviously. And I work in the mining industry. But I also play AFL as well. So that's my, my big out from work. I've been working full time since I was 18 and came out of high school.  Deidre: What would you say has been your proudest achievements so far, Amanda? And what's the next thing that you're hoping to take off this list, out of all the things you've done to date, like what is something that's that's up there that you're really looking forward to doing?  Amanda: Oh, my proudest achievement? That's actually a really tough question, Deidre. Because--  Deidre: Yeah, you're welcome.  Amanda: I am so proud of, from where I've come from, to where I am now. I am so proud of that. And that's just in my life, in my health, in general. Becoming who I am, like actually growing into somebody who I'm proud to be was, is probably my, you know, it's so hard. There's so many good ones. You know, we can talk all day.  Deidre: Yeah, I know, I know--we could talk all day.   Amanda: We would be here all day.   Deidre: So that'll be our next podcast.  Amanda: Do you know what my proudest achievements I reckon, thinking back now. I lost one of my very, very good friends who I grew up with quite a few years ago now. And he was the third one in about a span of about five ...

Amanda on kicking goals and the value of strong support networks: part one In this episode of the CFStrong podcast we hear from Amanda about her experience growing up with CF, the importance of her support network and—literally—kicking goals. Amanda discusses playing contact sport, how she dealt with her health taking her away from the sport she loved and her decision to get back on the football field. This is the first episode of our two-episode chat with Amanda. “…as I was growing up, I kind of found that they were the reason why you got through the hospital admissions, or you got through the bad days was purely to have that support system. I have an amazing one. Absolutely amazing, even being 28 and working as hard as what I do, I have some amazing people in my life.”   —Amanda Image: Jillo Foreman. Transcript Deidre Gorrie: Hi everyone and welcome to the CFStrong podcast. My name is Deidre Gorrie and I'm the programs and support services manager for Cystic Fibrosis Community Care in New South Wales. I am in the incredibly fortunate position of being able to chat with some of the most amazing adults living with cystic fibrosis from around Australia for the CFStrong podcast series. The CFStrong podcast series covers a broad range of topics including the challenges and successes of those living with cystic fibrosis, where you will hear real firsthand experiences and stories.     Deidre: Hi everyone, today we are very fortunate to have Amanda joining us. Amanda is going to chat with us and share a glimpse into her life. Welcome to CFStrong. Amanda, would you like to say a few words to introduce yourself to our lovely listeners today.  Amanda: Thank you so much, Deirdre. Thanks for having me on, I'm really excited. My name is Amanda. I am based in Brisbane, Queensland. I'm 28 currently when we're doing this. I have cystic fibrosis, obviously. And I work in the mining industry. But I also play AFL as well. So that's my, my big out from work. I've been working full time since I was 18 and came out of high school. Yeah, that's a bit about me. I guess there's not much to it.  Deidre: I think there is, I think there's a lot to it Amanda. I think you've done a good little intro taster. And we'll just peel back some of those layers and find out a little bit more about your work. And I think we've coined the term today working in mining and kicking goals as our general umbrella term. So, we'll dive on, and we'll see exactly what that looks like. So, are you ready for me to kick on into the first question, Amanda?   Amanda: Yeah, let's go for it.   Deidre: Yeah. All right. Let's start by learning a little bit about your support system, because we all know that supports really are a fantastic resource, irrespective of whether it's in the in the hospital environment or in the home environment. And who has been some of these supports and how they helped you throughout your life to get to where you are today?  Amanda: Yeah, it's a really great question. I think for me,

This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. In this episode, Jen Hauser, a physiotherapist with nearly twenty years experience, speaks with Meg about her physiotherapy routine and the value of building positive relationships with your healthcare team. Meg, a young woman with CF, shares her insights on working together with her healthcare team for better outcomes. Meg also talks about how she has learnt over time to modify her daily treatments to get the best out of techniques depending on what her body is telling her. There is some helpful discussions around timing of inhaled medications and how we can use our symptoms to make informed choices around airway clearance and exercise. I really like to feel like I have autonomy when it comes to my health care. For me, CF is a big part of my life but it's still not my whole life. I found that professionals who treat me like a person first and a patient second probably tend to build a bit of relationship with me. And then with that relationship, I feel like I'm more honest and open with them, rather than telling them only what I think they want to hear. I feel like this also creates mutual respect in my experience that probably helped me create better health outcomes for myself. —Meg Transcript Jen: Hello and welcome to the CFPhysio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I'm a physiotherapist with almost 20 years' experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong we have joined forces to bring the CF community real life insights and personal experiences on all things physiotherapy and CF.   CFPhysio.com is a not-for-profit organisation striving to deliver evidence-based education in CF physiotherapy management to health care workers and individuals impacted by CF. CFStrong is a website designed to inform, educate and empower adults impacted by CF through the sharing of individual's personal journeys of living with CF.   We hope you find some value from listening to the podcast we bring to you in this series. But please remember the content is not intended to replace your usual healthcare. Discuss any concerns or questions you may have with your healthcare team directly.   I'm super excited to introduce you today to Meg who has agreed to come in and have a chat with me about aspects of her physiotherapy care regime. Meg, thanks so much for joining me today.  Meg: Hi, Jen. It's great to be catching up with you today. And thank you for inviting me to be part of this great podcast series. I'm really excited to be talking with you.  Jen: So, Meg, before we get started, I thought it might just be interesting for everyone to have to know a little bit about yourself. So, we'll break the ice with three of your top interests or passions in life.  Meg: Sure thing. Well, I just turned 28, I'm self-employed as a hairdresser. And I really love spending time with my two dogs and my husband, Dan. I don't really know if I have any hobbies. But I definitely enjoy socialising with my friends and going out for a meal. And I don't mind reading a book.  Jen: Nice. What's the latest book you've read?  Meg: I think it's called the Hypnotist Love Stor...

Alex on switching gears and managing CF In this episode of the CFStrong podcast we hear from Alex who for a long time let his treatment take a backseat. He discusses how he used to approach his health care, what helped him get to a point where he could take his treatment seriously and how he approached switching gears and managing CF. "I also wouldn't change a lot of the decisions, even the bad ones, that I've made, because they've helped me learn, and they've helped sort of teach me what is important. So it's not just about managing, like you can, you can wrap yourself in cotton wool and just do all the treatments and live like a life where you sort of don't get out and experience or get out and live... it's about I think more balancing those things." —Alex Transcript Deidre Gorrie: Hi everyone and welcome to the CFStrong podcast. My name is Deidre Gorrie and I'm the Programs and Support Services Manager for Cystic Fibrosis Community Care in New South Wales. I am in the incredibly fortunate position of being able to chat with some of the most amazing adults living with cystic fibrosis from around Australia for the CFStrong podcast series.   The CFStrong podcast series covers a broad range of topics including the challenges and successes of those living with cystic fibrosis, where you will hear real firsthand experiences and stories. Today, we are very fortunate to have Alex joining us and we are going to attempt to unpack the idea of switching gears when it comes to living with cystic fibrosis. Welcome to CFStrong Alex, would you like to say a few words to introduce yourself to our lovely listeners?  Alex: Hi, my name is Alex, I'm 27 years old living in Sydney with cystic fibrosis.  Deidre: We thought we would unpack the idea of switching gears. I know that we chatted about it before Alex and it was something that was particularly relevant, and we thought we could help unpack it a little bit to help some of our younger listeners and even some of our older late diagnosis listeners. So what was going on for you at--to get to a point, I guess, where you felt that things really did need to change in your life.  Alex: I mean, I guess I should preface this with the, I guess, thought that I'm not the greatest, well haven't been the greatest in my past, with managing sort of my healthcare and my treatments, I've sort of lived my life to the fullest and sometimes my own care would maybe take a backseat, or an afterthought to that.   So I mean, my general attitude towards the healthcare and treatment side of CF was sort of that I, like I wasn't going to let it stop me do anything. But at the same time, I sort of wouldn't give it the time or respect that it probably deserved. And I mean, with everyone sort of telling you, like physios and doctors and specialists telling you like every time like this is what you need to be doing. And you sort of, as a teenager, especially in my early 20s, I sort of thought like, you know, well, yeah, like this is what you say, and this is, I sort of understand that but at the same time, like I'm still going to live my life and I don't want to be impacted by having to sacrifice all this time and energy into doing those treatments.   And I think at the time,

This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. In this episode, Jen Hauser, a physiotherapist with nearly twenty years experience, speaks with Luke about how he manages his CF and physiotherapy and how he stays motivated to keep active. Luke, a young man with CF, shares some of his journey with developing a routine for life, including aspects of lung hygiene and exercise. Luke talks about his strategies for motivating himself and staying on track, especially when there might not be any obvious symptoms to treat, or immediate improvement in health outcomes when he does complete his physiotherapy. If you are feeling like you want to revisit some old strategies or find new ones, listen in and see what you can find through Luke’s insights. I think it's fair to say that in the past I’ve been usually pretty—not that consistent, I guess you could say, with you know, treatments and whatever else. So, a little while ago, I made just like a simple, like little calendar thing of the week and I've got that laminated. So, it's just like, you know, Monday, Tuesday, Wednesday, and like a little box. So, what I do is every time I do physio of some sort, I'll just put a tick on it so I can look at that. And it’s sort of—a piece of paper can't really hold you accountable for not doing anything. But it's more so to look at, at least of some sort of visual reminder that I haven't done you know hypertonic on this day? Why not? —Luke Transcript Jen: Hello and welcome to the CF physio.com and CFStrong collaboration podcast series. My name is Jen Hauser. I'm a physiotherapist with almost 20 years' experience in cystic fibrosis care and the project lead for CF physio.com. Together with CFStrong we have joined forces to bring to the CF community real life insights and personal experiences on all things physiotherapy and CF.   CF physio.com is a not-for-profit organisation striving to deliver evidence-based education in CF physiotherapy management to both healthcare workers and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF through the sharing of individual's personal journeys of living with CF.   We hope you find some value from listening to the podcasts we bring to you in this series. Please remember, the content is not intended to replace your usual health care and we encourage you to discuss any concerns or questions you may have with your healthcare team directly. I'm super excited today to have Luke with us who has agreed to come in and chat with me about aspects of his physiotherapy care. Luke, thanks so much for joining me today.  Luke: No problem at all.  Jen: Great to have you here. Now Luke, I know we were talking a little bit before we got on here just about the fact that you actually haven't been in hospital for an admission for your CF for lung needs for over 10 years. And on a day-to-day basis you sort of experience relatively not many symptoms of sputum or cough. So, are you happy to sort of share with us what you're currently doing for physio?  Luke: Yes, my current physio regime if I could use that terminology, pretty average, really, I think you could say. I sort of have a really—every alternate day,