CFStrong: Inform. Educate. Empower.

CFPhysio on exploring the huff This episode of the CFStrong podcast is thanks to our collaboration with CFPhysio. Sit down with experts in their field, Dr Brenda Button, Kathleen Hall, and Esta Tannenbaum, physiotherapists who have worked with individuals with CF across the lifespan, and learn more about huffing. This technique is integral to all airway clearance in CF. Understanding more about what is being achieved in the airways when performing this technique will empower you to develop a huff that works for your airways. This is suitable for healthcare professionals and individuals with CF. ”The ears are, as physio's, our most valuable tool, but they also need to be the individual with CF or the parent and caregiver’s most valuable tool when they're not in clinic with us and knowing what they need to be listening for. Jen, CFPhysio 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.  Jen: Today I have three physiotherapists in the studio with me to have a chat about the huff, the forced expiratory technique, and how we can use this technique to change the airflow in the airways to more effectively shift secretions, to check in with your lungs and to sweep the airways surfaces.   I'd like to introduce Dr. Brenda Button, a physiotherapist who has had three decades of experience working across the lifespan in cystic fibrosis. Brenda is currently working at the Alfred Hospital in Melbourne Australia. Brenda has areas of interest in research and clinical expertise, including gastroesophageal reflux, urinary stressing incontinence, exercise testing, and more. Brenda is an advanced airway clearance instructor recognised internationally for her work.   We also have Kathleen Hall, a physiotherapist with over 20 years' experience working with adults with CF and non-CF bronchiectasis. Kathleen is also a senior lecturer in cardiothoracic physiotherapy at the Australian Catholic University, and also has a bespoke private practice catering for non-CF bronchiectasis and disordered, dysfunctional breathing.  We have Esther Tannenbaum, a physiotherapist who has worked for over 25 years in the area of respiratory pediatrics, which has included working at children's hospitals in Cape Town, London, and is currently working at the Royal Children's Hospital in Melbourne. Esther's main areas of interest has been CF, PCD, bronchiectasis, and acute respiratory disorders.   What a great opportunity for those in the CF community, individuals with CF, parents and care givers and healthcare professionals to have these three experts in the studio today, and really looking forward guys to hearing some audio of huff techniques and listening to what you can share with us.  Brenda Button: Thank you very much, Jen, for your introduction of all of us. I'm going to kick off by trying to describe to you what the airways look like and what happens when we do huffing from low, mid and high lung volumes.   So, imagine a piece of blank paper in a horizontal position.

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. ”Fortunately enough for me my three children are very healthy, very active, and they've become my three best friends. We do everything together now. It's an awesome time in my life to be honest. Yeah. It's great. Scott 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 that 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: Hello, and welcome to the CFStrong podcast. I am your host, Sam, and today with me, I have Scott. Hey Scott. Do you mind just telling us a little bit about yourself and your family?  Scott: Yes, mate. How you going? I'm 40 years old, currently living in the Southern Highlands, married with three kids, so yeah. We have small business or a couple of small businesses. My wife has just started a small business of her own making cakes and cupcakes, and on the golf pro by trade, but now we run the pro shop at Campbelltown golf club.  Sam: A pro golf by trade. As in you've played golf in on the world stage, or is it more of a local pro golf scene?  Scott: Yes, more locally. I did go overseas a couple of times, not on the world stage, unfortunately. That was the dream, but obviously, I didn't get there, but played a couple of the island events in Fiji, Samoa, Tahiti and New Caledonia and then right around Australia. I played most of my professional golf before having to settle down and start working back in the pro shop and which has been around Sydney for the, most of my career.  Sam: That's really exciting. It sounds like you've had a good experience in the golf sector with all the travels.   Scott: Yes  Sam: I'm guessing that would also made you stay very fit in regards to looking after your CF as well.  Scott: Yes. It's actually been a bit of a blessing taking that path with golf. It obviously gets you outdoors a lot of the time but working in the pro shops, we also are indoors, so it's a bit of a good mixture. It's not like you're out in the sun all day but I'm not also sitting at a desk. It keeps me active. Taking up golf as a career was something that my parents—my dad was a good golfer, so that's where I got it from. He wanted to turn pro. When I said I was keen to do it, he was all for it. So I did a trainee ship as a professional golfer back when I was 19. You learn along the way that doors open here and there in that industry, which is why I'm still in the industry today. I love golf. You can do a lot of things, travel the world, obviously and meet a lot of interesting people, but also getting a game of golf in all the times is fun as well.  Sam: My dad's an incredible golfer, but myself personally, I like to stick to the mini golf because the skills unfortunately did not pass down the generation.  Scott: That's alright.  Sam: Just wanted to go back to your family, you mentioned you had three kids, how—what are their ages and what do they like to do?  Scott: I've got a boy that's eight-year-old next month, he's turning 8 I should say. I've got a five-and-a-half-year-old boy and a two-and-a-half-year-old daughter. They're full on. They enjoy doing everything at the moment, which is great. They haven't really picked up anything that they want to do, particularly because they're just loving doing soccer, bike riding, footy, guitar lessons have started up,

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, I definitely found the newborn stage very, very challenging. And I think sometimes when I look back at that time now, maybe in some ways I experienced a bit of postnatal depression and I really found the hormonal changes quite extreme.   I actually remember sitting in the hospital—so, I only was in the hospital for three or four nights. And I remember having quite an identity loss or sense of lo...

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 into the world of sport?  James: Well, I guess I suppose I didn't have a choice.   Sam: Yeah, right.   James: No matter what. All three of my brothers were all playing footy, cricket and stuff like that. Dad was president down at the local club and so was, and Mum was running the canteens. So every every Saturday or Sunday, I was down the club anyway, so I really didn't have too much of a choice, but I just loved being active mate. We've always you know, fished in the summer, played cricket, you know, played footy. Just loved hanging out with my mates and you know,

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 appointments down at the Royal Children's Hospital as a child.   So, I was lucky to have a fairly normal childhood, but as I entered sort of my mid-teens, I started to really feel all the effects of CF and understand obviously that something was quite different about my body. So I sort of began having routine tune-ups from about the age of 17 and I was able to maintain my health fairly well th...

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 months, you know, that had CF--  Deidre: Yeah.  Amanda: --that I'd lost. And that one was probably the hardest because we actually grew up together. Our parents did a lot of work with CF Queensland, and we grew up together. And you know, even though he was always a little bit older, and we sort of crossed paths occasionally and hospital and that kind of thing, losing him as the third person, in, you know,

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, 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.   Growing up, my mum and my dad both worked full time, worked very hard to make sure that my health was top priority, but also remembering that I have a brother who's two years older. And when my mom and dad went there, my Nan and my Pa jumped in, and we're certainly number ones, when mum and dad weren't there.