CFStrong: Inform. Educate. Empower.

In this CFStrong podcast episode, Alexa, a mother from Melbourne, shares her emotional journey after receiving her daughter Zoe's diagnosis of cystic fibrosis. Alexa vividly recounts the moment she received the news, the overwhelming emotions that followed, and the subsequent whirlwind of appointments and reactions from family and friends. Despite initial struggles and feelings of isolation, Alexa shares the importance of allowing oneself to feel the range of emotions, seeking information, and finding support. She offers reassurance to other parents facing similar situations, highlighting the gradual acceptance and adjustment process, and emphasising that while the journey may be daunting, there is hope and strength to be found along the way. Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='60';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Adult - Alexa on Parenting and CF","created_at":"2024-05-06 19:37:05","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_alexa_on_parenting_and_cf_1714988265537","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"allow_public_link":0,"embed_form":"","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],

In this final episode of the current CFStrong podcast series, co-host Brad Dryburgh engages six young adults living with cystic fibrosis (CF) in a profound discussion about their philosophy for leading fulfilling lives despite the challenges posed by the condition. Through heartfelt reflections, the guests share their deeply personal perspectives on resilience, acceptance, and positivity in the face of adversity. They emphasise the importance of embracing life's unpredictability, maintaining a positive mindset, and finding strength in vulnerability. From acknowledging the unfairness of living with CF to harnessing the power of trust and resilience, each guest offers unique insights into navigating life's uncertainties with grace and determination. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='32';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Podcast: Balancing a social life and CF","created_at":"2024-01-30 12:19:50","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_-_podcast_balancing_a_social_life_and_cf_1706577671960","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","allow_public_link":0,"embed_form":"","conditions":[],"ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful? - Podcast: Balancing a social life and CF","key":"did_you_find_this_information_useful_-_podcast_bala...

In this episode of the CFStrong podcast series, co-host Brad Dryburgh engages in candid discussions with six individuals living with cystic fibrosis (CF) in their 20s. Addressing the question of fears and worries for the future while living with CF, each guest shares their unique perspective. From concerns about the broader CF community and the impact of treatment disparities to personal reflections on life expectancy, relationships, career aspirations, and the emotional toll of witnessing loved ones' mortality, the conversation delves into the complexities of navigating life with CF. Despite these fears, the episode highlights the resilience and self-awareness of the guests, emphasising the importance of staying busy and addressing these concerns head-on. The conversation sheds light on the complexities of living with CF, providing a valuable perspective for both the CF community and those seeking to understand the challenges faced by individuals with this condition. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='7';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Content Feedback","created_at":"2022-12-23 13:13:17","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670298733697","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/7junc","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","public_link_key":"7junc","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field",

In this episode of the CF Strong podcast, co-host Brad Dryburgh engages in an open dialogue with six young adults living with cystic fibrosis (CF) about the often-sensitive topic of body image. As the eighth episode in the series, each guest, reflects on their personal experiences and struggles with body image, shedding light on the unique challenges faced by individuals with CF. The candid conversations touch upon issues such as acne, weight gain, societal perceptions, and the journey towards self-acceptance. The guests share their personal triumphs and the liberating moments when they embraced their bodies. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Voice Over: Welcome to the CF Strong Podcast. CF Strong 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.  Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this eighth episode of our series, we'll hear from each of our six guests as they answer the question. It's not uncommon to hear that some people with CF experience challenges with body image. Have you had any experience with this personally?  Adam: Yeah, I used to always feel really sad about being underweight. Um, but I just learned to love the skinny boy aesthetic. Um, and I don't, yeah, I don't know. I just don't really care what people think about my body because if they knew, I think they'd be pretty impressed. I think they'd be like, oh, keep, keep going, keep going. You're doing really well, you know, you're born with CF. Like, yeah, uh, yeah, it makes sense that this is the way it is. So I think it's just a lack of understanding from people, but it was pretty liberating the day that I, that I, realised that it doesn't really matter what people think, it's just about how I perceive myself. That's like the, the, the most important thing.  Brad: What age do you believe you were, if you can recall, when you felt liberated by that thought?  Adam: Definitely after high school. Um, teenage years are so crazy, uh, and teenagers are so crazy themselves. So probably 1920 was the real, like coming, coming to terms or accepting the way that I look.  Blake: Uh, I think, uh, I think everybody does really, you know, obviously with, you know, my body type is just sort of, you know, I'm, you know, five foot, 11, whatever on the, you know, you know, a little bit taller than average, I guess. I don't know. And I've always been pretty skinny and lanky. So that, that was a massive thing I sort of dealt with, especially in school, you know, primary school a little bit. I was always short and skinny. And then, you know, once I hit high school, that's when, you know, all of those issues become way worse. But, um, you know, it's sort of, you know, it, it's sort of died down a little bit now. I'm not as worried about it anymore, but they do, you know, it,

In this episode of the CFStrong podcast series, Brad Drybugh explores the financial challenges faced by individuals living with cystic fibrosis (CF). Through engaging conversations with six guests, the episode addresses the impact of CF on financial planning and explores benefit schemes that have helped along the way. The guests share candidly about their struggles, successes, and strategies for managing finances, touching on topics such as relying on mobility allowance and grappling with fluctuating incomes to navigating the complexities of purchasing a home and managing expenses related to CF treatments and healthcare. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Voiceover: Welcome to the CF Strong Podcast. CF Strong 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. Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this seventh episode of our series, we'll hear from each of our six guests as they answer. Having CF can cause financial stress. How are you planning financially for your future? And are there any benefit schemes that have helped you along the way? Adam: Yeah, so I honestly haven't really planned for the future financially. Um, I never really, I just never developed that side of life because I've never really had the money to do it, you know, um, I suppose I'm on mobility allowance at the moment also, which helps a lot, uh, in terms of medication, you know, it just, honestly, it just covers me with my meds. Um, and that's, that's honestly really helpful. Um, but now I'm on Trikafta as well. I have been thinking about the future financially. I haven't really figured that out yet, but it is something I am currently going through. Blake: Yeah, well, it's, uh, you know, on the finance end, for me, again, I'm very lucky to do what I do. This year has been the, you know, the year that the career in standup has really kicked off. Um, but there were, especially first moving to Melbourne from the country, you know, trying to pay rent, especially during the pandemic and stuff like that. Um, it got very, very rough at times. I remember there, you know, being some nights where, you know, I had less than 10 in the account. Um, so now that I do have a sort of, you know, a, a more, um, stable sort of income, you know, from, you know, doing shows here or there and just touring and stuff like that, it, it has allowed me to, you know, actually make a budget, you know, plan for the future. Obviously, being with my girlfriend, that's another income and we're just gonna save for a house, do all the stuff. I, I think, you know, I'm not really thinking in terms of CF at the moment, which I probably should, but I think at the moment I'm sort of just more focused on how can I do this as, as normally as possible. Um, 'cause you know, cfs a thing where, you know,

In this episode of the CFStrong podcast, co-host Brad Dryburgh explores the world of careers for individuals in their 20s living with cystic fibrosis (CF). Featuring insights from six guests, the episode addresses the question of whether they are pursuing their ideal careers and if they've faced job rejections due to CF. The candid responses reveal diverse experiences, From finding fulfillment in music and stand-up comedy to challenges in securing employment due to health-related limitations, the guests reflect on the impact of CF on their professional journeys. Despite encountering obstacles and misconceptions, they remain resilient, determined to follow their passions, and challenge stereotypes about CF in the workplace. The episode sheds light on the complexities of balancing health needs with career aspirations and emphasises the importance of support and understanding in the professional realm for individuals with CF. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Voiceover: Welcome to the CF Strong Podcast. CF Strong 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. Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this episode of our series, we'll hear from all of our six guests as they answer the question. Are you pursuing your ideal career or have you encountered any jobs that wouldn't hire you because of your CF? Adam: Uh, no. Um, you know, my ideal career, I, again, I've never really had an ideal career. I've always just been playing music and I'm still doing it. And, it never paid the bills in the beginning, it was just a lot of fun. It was a lot of passion, and everyone around me was freaking out being like, oh, what's Adam gonna do? But he is not, he's not studying, he is not getting a career. Like, you know, my family are really worried about that. And I completely get that. I completely understand why the beauty of time is that, I got somewhere with it and now I can teach drums. Now I can actually make a career out of it. I play in bands and there's money, there's some money there. I still have to work at a part-time job that isn't a career, it's just to pay the bills. But I think the passion over career has been probably the underlying theme of this whole thing. Like, oh, career. It's like, well, for me, I, I always thought I was gonna die young. Like, what? I don't really see a point in a career. I don't see the point in developing a skill in accounting or being, you know, working in finance. Like, I don't see the point in that for me, because that doesn't give me anything, you know, it only gives me material. It's like, it's too materialistic. And as I said, I'm so art peeled, I'm so music peeled that I, I, I would feel so, I, just wouldn't feel happy. I wouldn't feel me. I feel, I would feel like I'm chasing this thing that doesn't actually mean anything. Um,

In this episode of the CFStrong podcast, co-host Brad Dryburgh leads a candid discussion on the complexities of explaining cystic fibrosis (CF) to romantic partners. Through the experiences of six individuals living with CF, listeners gain valuable insights into the challenges and triumphs of disclosing their condition in relationships. From grappling with feelings of burden and anxiety to finding acceptance and support, the guests share their personal journeys of opening up about CF to their partners. Some recount initial struggles and misconceptions, while others reflect on the importance of honesty and self-acceptance in fostering meaningful connections. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. 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. Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Drybar. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this fifth episode of our series, we'll hear from each of our six guests as they answer. When you've met someone special, be it a boyfriend, girlfriend, a partner of any kind, how do you explain your CF and has that been a challenging conversation to have? Let's hear their honest thoughts. Adam: Yeah, I think in the beginning it was, it was really difficult. I didn't let anyone in. I didn't even bother seeing anyone or dating anyone because I just thought I was too much of a burden, uh, for anyone. I always thought I was gonna be like the patient and the person that I was with was gonna be my carer. Like, and I mean, it's fair, it's, it's a fair thing that I, that I thought that, 'cause I've been quite sick my whole life, but now that I'm, I'm healthier, um, it comes a little bit easier to explain that to someone, or I feel a lot more comfortable because I am healthier. And, um, not to say that when I was really sick that I couldn't explain that to someone. Um, I just think I had a lot of anxieties around relationships because of that. Now the anxieties have, have softened a little bit and explaining CF to people has come a lot easier. But that has also coincided with the fact that I've been a lot more open about my CF to the public and writing about it and sharing my experiences with people. Um, so I think a big part of it is just comfortability and letting people know, like no matter how sick, I, I think if I knew what I knew now and I was just as sick as I was before, um, I think I wouldn't really have much of an issue explaining it to a partner. But it also, it, it should also be said that it's important to know what your idea for a relationship is before you start looking for one, two. And that's something that's something really important to figure out too, because that, that'll give you all the light, that'll give you everything you need to know when approaching it. Blake: Uh, yeah, well, my, just in my experience and yeah,

In this episode of the CFStrong podcast, co-host Brad Dryburgh guides listeners through a discussion on fitness and wellness routines among individuals living with cystic fibrosis (CF). With a focus on the experiences of six young adults with CF, the episode explores how their fitness regimens have evolved over time and the benefits they've experienced. From traditional physiotherapy routines to post-Trikafta adjustments, the guests share their diverse approaches to staying active and maintaining well-being. While some engage in activities like running, Pilates, and weightlifting, others find solace in more unconventional pursuits like drumming and golf. Despite the challenges posed by CF, the guests highlight the transformative power of physical activity in managing their health and enhancing their quality of life. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Voiceover: Welcome to the CFStrong Podcast. CF Strong 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. Brad: G'day everyone and welcome to this incredibly exciting new season of the CFStrong Podcast. I'm your host and fellow CF patient Brad Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this fourth episode of our series, we'll hear from each of our six guests as they answer the question, do you have a fitness or wellness routine that works for you? And what benefits have you experienced as a product of that routine? Adam: Um, it's changed a lot over the years, I would say before Trikafta and then after, well, currently taking Trikafta, um, it's changed completely. So before I was on Trikafta, it was wake up, do physiotherapy, pulmozyme oral medications. Like that was like, uh, I had to do that. That was just a part of my routine, and it was something that, I stuck with as much as I could because it kept me healthy. Um, now in Trikafta-world as I like to call it, um, it's different. Like I just wake up now and I go about my day and the things that I've replaced. Um, the, the things that I've replaced with that old, that old system have, have now just become like runs or, um, eating well or, um, trying my best to meditate or, or listen to good music and really enjoy the moments as much as I can. Um, so, you know, at the moment I currently go for runs. I really enjoy them because it's me, my headphones, and it's me in the world, and it's me in the air, and it's me in the cool breeze. And whenever I get home, I feel amazing. Um, I have the best days after I go for it. I definitely get that run as high. It's so good, um, uh, drumming as well is such a, is such a workout. Um, and it's so cathartic too, and that's the big part of my wellness routine. Even if I'm, if I'm not teaching, if I'm not playing in my band or playing professionally, even if I'm just playing by myself, it's so cathartic and it feels so good, and by the end of it, I'm usually drenched in sweat and, um, feeling incredible too. Blake: Yeah, no, well, pretty much all of my fitness comes from walki...

In this engaging episode of the CFStrong podcast, co-host Brad Dryburgh explores the intricate relationship between cystic fibrosis (CF) and mental health. The third episode of the series features candid insights from six guests – all in their 20s - as they share their personal journeys and strategies in navigating the complex intersection of CF and mental well-being. From the challenges of social anxiety and the pressure to explain their disease to others, to the impact of CF on life choices and the importance of seeking mental health support, the guests delve into the highs and lows of their mental health experiences. This episode sheds light on the often-overlooked aspect of mental well-being within the CF community, offering a refreshing and informative perspective on the unique challenges faced by individuals living with cystic fibrosis. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. Transcript Voiceover: Welcome to the CF Strong Podcast. CF Strong 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. Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this third episode of our series, we'll hear from each of our six guests as they answer whether their mental health has ever been affected by cystic fibrosis and if they have any strategies to help improve their mental health. Adam: It's a really tricky question, and it's really loaded because CF affects everything that I do, whether I've realized it or not, like in a, in a way, the reason I'm a musician and the, the reason I love art is because I never saw the purpose in, you know, developing a career in something that will only give me money, that doesn't actually give me anything of value. What I value is experience and, and relationships and things that bring me joy or, or passion, you know, things that are like lively and, and really human, you know, rather than money and statistics and, and houses and, and material things. I'm not really into that. That's just not what I'm into. So CF has affected the way I drive my life, and in essence, essentially how my mind works. Like why, why I prefer going for walks, um, why I prefer contemplating things, why I would prefer playing the drums like this is all because I don't see a value in the thing that everyone around me seems to, seems to push towards. Um, but if we get, if we go a little bit deeper, and I think about how CF has affected me mentally, um, there has been a lot of complex trauma and a lot of, a lot of anxiety around things which I'm starting to realize is, uh, is a byproduct of living with cf. Um, you know, things like being underweight, things like coughing in public and being scared that people think that I have COVID, you know, uh, social anxiety. These things have all occurred from having CF and, you know, some days I really don't feel like explaining my disease to people.

In this engaging episode of the CF Strong podcast, co-host Brad Dryburgh delves into the unique perspectives of six guests, as they discuss vaping and how it intersects with the challenges of cystic fibrosis. The candid conversations reveal a spectrum of attitudes towards vaping, from relaxed approaches to strict stances against it. The guests share personal struggles, experiences with peer pressure, and the complexities of dealing with vaping in social settings. As Brad aptly guides the discussion, the episode sheds light on the invisible struggles faced by those with cystic fibrosis and the delicate balance required to navigate decisions around vaping. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. For more info on vaping and CF, you can also listen to this podcast episode featuring a health professional's insights and perspective. 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, and 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.  Brad: Gday everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Drybar. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this second episode of our series, we'll hear from each of our six guests as they answer their personal thoughts and take on vaping with cystic fibrosis and how they feel when those they know vape around them. Adam: So in a nutshell, um, I usually don't really care if people vape. I won't vape myself because I know how harmful it is, but for the most part, I'm not really bothered if other people do it. Um, and especially around me, maybe I should be a little bit more confronting, a little bit more, uh, upfront about it to people, but I, I honestly, it's not really something I can concern myself with.  Blake: Yeah, well, um, yeah, well, I sort of, a lot of my mates do it and, you know, I'm not gonna be, I, I refuse to be one of those people that just like sits in a car and just go and just like sort of tell people what to do just because I've got cf. But, um, I guess in terms of people who do have CF and you know, obviously on a night out you get randoms offering you or vape or you know, whatever, if you're at a nightclub or a bar or anything like that, um, I'm a pretty hard no on it. I think, uh, you know, I, I equate it to, you know, if you had a really bad liver, why would you keep drinking? You know, just, just sort of stuff like that. I don't really see the point of chucking any more stuff in your lungs that doesn't need to be there. So I'm a pretty hard no, but, um, but yeah, I do know a couple of people who, who have CF who, uh, you know, maybe dabble, dabble here and there. Um, but yeah, I'm a very hard no on it, I think. Caitlin: I'll be honest, I do have friends and family members that vape, so it is around me. Um, I'm very lucky that the people who do it do it not near me. Um, I think peer pressure is a very real thing and unfortunately, some people succumb to it and, um,

Have you ever wondered how to balance a social life while living with cystic fibrosis? You are not alone. Hosted by Bradley Dryburgh, himself a young person living with cystic fibrosis (CF), this latest series of the CFStrong podcast delves deep into the perspectives of six young adults facing similar challenges. In this opening episode, Adam, Blake, Caitlin, Ellie, Sam, and Tayla share candid accounts of how they navigate a social life while managing their CF. From Adam's seamless integration of CF into friendships to Tayla's candid admission of hermit tendencies, each story offers a unique perspective into the delicate balance between health and social life. Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies. 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.  Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In the first episode of our series, we'll hear from each of our six guests as they answer how they juggle friends and a social life alongside cystic fibrosis.  Adam: Yeah, well, for me it hasn't been overly difficult 'cause maybe I'm a little bit lucky where I've always had a few really close best friends. Um, you know, my best friends from when I was 12 are still my best friends now. So I'm lucky in the sense that they know me really well. Um, they know my cystic fibrosis. , I don't really have to go through the phase of meeting. I mean, I do, but I don't have to go through a huge phase of meeting new people and feeling anxious about that. 'cause I feel quite comfortable meeting people and making friends with people, CF or not. The thing I noticed, um, about meeting new friends with CF though, is that there is that hurdle, um, initially when they realize that you were, are sick and that you have a cough, or that, you know, I'm underweight or I take creon before I eat, or I take insulin before or after I eat, and I'm always checking my blood sugars. These are things that people aren't typically used to. So there is a, there is usually a conversational hurdle to jump over, um, to get to that next level of friendship. And I'm always aware that sometimes it could be, for me, it's quite, it could be quite, uh, what's the word? I think it's just, I can get quite anxious about it. Um, but in the most part, people have been really understanding, um, and very respectful and very compassionate whenever they hear about my cystic fibrosis. So if anything, it's just given me a lot of social com, uh, social comfortability, um, around making friends. So CF and friendships, it's, it's not a big thing. Uh, it's, it's just normal for me. It's like, it's fine, you know?  Blake: Yeah. Well, um, I mean, I, I guess I've been, I think that what's probably gonna be a common thread through most of my answers is that I've been very lucky compared to I thin...

In this podcast, Jen Hauser, CFPhysio.com founder and physiotherapist, caught up with Dr Sue Keating and Nicki to learn more about menopause in CF. This discussion shares some of Nicki’s journey navigating CF symptoms, post lung-transplant symptoms/medication side effects, and possible menopause. With the increasing age of survival in CF, menopause is becoming a health experience that women with CF are having to navigate, and the literature would suggest a 2-3 years earlier onset than those women without CF. This podcast discussion is only the tip of the iceberg. More resources are in the making to help women learn more about how they can be supported during menopause, how to be proactive and care for their bladder/bowel health, bone health, mental well-being and more. Please talk to your treating healthcare team if you have any concerns with your health, or if anything in this podcast seems relevant to you, before changing anything in your CF/health management. The websites mentioned in the podcast are: AMS_Diagnosing_Menopause_Symptom_Score.pdf Menopause | CFReSHC Additional edit: following this podcast Nicki was seen by a GP with a special interest in women’s health and has commenced on hormone replacement therapy after additional consultation with her treating doctors (transplant and CF specialist), and her pharmacist. Transcript Voice Over: Hello and welcome to the CFPhysio.com and CF Strong 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 CF Strong we have joined forces to bring this 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. CF Strong is a website designed to inform, educate and empower adults impacted by 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. Jen: Hello and welcome to another CF strong CF Physio podcast. Today I have two guests joining me in the studio, Nicki, who has a Bachelor of Education and Vocational Education qualifications and has been a teacher for over 20 years teaching preschool to grade 12. She's currently teaching senior secondary students, in Hobart she has two soccer mad sons and has been married for 24 years to a tragic Collingwood supporter, Nicki's words, not mine. When not involved in her children's sports, she likes to spend time in her garden or on other various projects that she would like to have a go at that never seems to have time. To finish, Nicki has CF. She is a bilateral lung transplant recipient and one of the most organised individuals I know in life and also in her own healthcare. I also have doctor Sue Keating, who is a fellow of the Royal Australian College of General Practitioners, a fellow of the Australian and New Zealand College of Obstetricians and Gynaecologists, has a Bachelor of Medicine, a Bachelor of Surgery and has a Masters in Bioethics. Sue began her career as a GP but wanted to learn more about Women's Health. She went to specialise in obstetrics and gynaecology and has worked in both the public and private sector. She also works for family Planning Tasmania and in Sues words she has had the privilege of being involved with women with cystic fibrosis as their treating doctor and has been involved in education events delivered by CF Tasmania to the community. She has participated in many fundraisers for raising awareness for CF and Sue’s very personal involvement is she has a much loved God daughter with CF. Full disclosure,

In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss vaping and CF. Transcript Voice Over : Welcome to the CF Strong Podcast. CF Strong 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. Sarah: Hello everybody and welcome to this quick fire one question, one answer podcast with clinical nurse consultant Kate Johnson. Today we're asking the questions that you want answered. So vaping just seems to be everywhere. What happens if I vape? KJ: Yeah, so the studies are coming out more and more now because it's only a recent thing. And a lot of people say, oh, I quit smoking to take up vaping, because It's better for me, it's not as bad. But the studies are actually showing that there are a lot of different chemicals in there and little particles that can still get in and cause lung damage and lung disease, increasing those lung diseases, blocking the airways leads to increased risks of infection. We all know what happens there. And it's also those chemicals can also lead to that lung damage. We know that the theory is that vaping is healthier than smoking, but we know that anything like that, so vaping, smoking, and it doesn't matter if it's from a cigarette, a vape, a bong, a joint or even a hookah, you know that you smoke at a lot of those pool restaurants. It is all harmful to your lungs. And especially those with CF. So why? It's because even people with healthy lungs, smoking and vaping and doing all of those can damage lung tissue and it actually reduces the lung function. So there's a big long explanation of how it affects the lungs, but the main thing is it actually damages the lungs. And we know that you throw in CF and smoking or vaping or whatever, and that increases the amount of damage to your lungs that even the CF disease causes. So it actually sort of multiplies the disease that can be caused. It's like a double whammy to your lungs and it can make you at a greater risk of lung infection as well and tissue damage. And we know we can't regenerate those tissues. So some studies have shown that it can actually affect and this is more smoking than vaping, but we know that can actually affect how the CFTR protein works in our body. And that can, and it's a CFTR protein that could cause a CF disease. So we know it actually can reduce the amount that it works by as well. So there's another really big factor as well that smoking and vaping that's recently been added in can actually disqualify you from a lungs transplant as well. So it's known that you are, it actually does help disqualify you from lung transplant and puts you at a greater risk of infection, as we said. But it's something that you don't need to sit back and not tell us the truth because I'll be honest, like working in peds and adults over the years, a lot of patients, you'll talk to them and you know they've smoked or they have been vaping or whatever, and they'll come in and you'll ask them, have you been smoking? Have you been vaping? Have you been having joints? And they'll say no. And we'll do a lung function, you see a great decrease in their lung function or just even a little bit of a decrease in lung function. And we then go through, we'll most probably do increased blood screening all the rest of it to find out the reason of that drop in your lung function. But if you're upfront and honest with us and say, "Look, I have actually been smoking or I have been vaping, or I have a few joints." That can actually answer a lot of the questions, why we see that reduction in lung function. And we can talk to you about that openly and honestly and talk abo...

In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss thrush and CF. Kate explains that females with CF, in particular, are prone to yeast infections, manifesting as thrush in the mouth or throat and fungal vaginitis in the vaginal area. Kate discusses the causes, including disruptions in pH balance due to antibiotics and corticosteroids used to treat lung infections. She recommends over-the-counter antifungal treatments and discusses potential prescription medications for severe cases.  Kate encourages open communication with the healthcare team, emphasising the importance of seeking help without embarrassment. Transcript Voice Over: Welcome to the CF Strong Podcast. CF Strong 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. Sarah: Hello everybody and welcome to this quick fire one question, one answer podcast with clinical nurse consultant Kate Johnson. Today we're asking the questions that you want answered, an embarrassing and uncomfortable one for many. Why do I always get thrush? KJ: Yeah, so females with cystic fibrosis are prone to yeast infection, so a fungal infection of the mouth and throat we call thrush, while yeast infection of the vaginal area is usually called a fungal vaginitis, but still, most people refer to this as thrush, as that's what most people know it as. Guys can also get thrush of the mouth. It's not just something that's only female only, but we do know that girls have a high tendency to get those infections. Fungal infections occur when the little microorganism called candida grow out of control in the body. And this is usually results in some sort of itching, irritation, bit of discomfort, the white patches. So it's more obviously you can see on your mouth or white patches and you can get a bit of white creamy discharge as well from your vagina. It can also cause a bit of pain during sex and also when you have a whee. In girls and women with CF, this is usually the infections are usually often caused by the antibiotics that we've put on to treat your infections in your lungs. So we know it disrupts the balance of the pH in those areas. And also corticosteroids. So steroids when you put on them for lung infections, etc, can really affect and have that effect because you're taking them daily. We usually recommend treating the yeast infections or thrush with over the counter sort of antifungal creams and oral medications like your lozenges, etc., or NILSTAT for the younger kids. But some of the severe infection may require some medication prescribed by your doctor. Though it hasn't really been scientifically proven, many people believe that eating yogurt with alive bacterial cultures can help restore the body's balance of those beneficial organisms that help to fight yeast. And there's also prebiotics that you'll often find your dieticians and your physicians will talk to you about to help balance out the body's natural ph. Because yeast infections are so common, it's really important to talk to your team. Don't be embarrassed about it. It's so hard not to be because I know walking up to your pharmacist, sorry, I've got this white discharge. It's a hard thing to sort of talk about. But when it's your trading team, it's as common to us talking about something like a yeast or a thrush infection or discharge as it is talking about your lung and your mucus and everything else. And no one seems to have too much issue talking to us about that. It's the same when you're talking about things like thrush as well. Voice Over: Thanks for listening to this episode of the CF Strong Podcast.

In this episode, CF Strong podcast co-host Sam Lefoe chats with Clinical Nurse Consultant Kate Johnson about how to balance fun and partying while living with Cystic Fibrosis. Kate discusses the considerations for individuals with CF regarding alcohol consumption, highlighting the increased risk of liver damage due to the strain on the liver from processing alcohol. Additionally, she emphasises the importance of moderation, safety, and communication with the healthcare team. Regarding smoking, Kate advises avoidance due to its detrimental effects on lung health and encourages open discussions about the risks and support for those trying to quit. The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='7_6';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Content Feedback","created_at":"2022-12-23 13:13:17","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670298733697","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/7junc","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","public_link_key":"7junc","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670298733697",

In this episode, CF Strong podcast co-host Sam Lefoe chats with Clinical Nurse Consultant Kate Johnson about how to balance time with friends while living with Cystic Fibrosis. Kate delves into the challenges of balancing cystic fibrosis (CF) responsibilities, such as medication adherence, with the desire to partake in typical teenage activities. She suggests normalizing CF as part of one's identity rather than letting it define them. She discusses strategies to integrate treatments into daily life, suggesting morning medication routines and incorporating physical activities like sports or walks as incidental physio. Kate encourages individuals to consider how they perceive others taking medication, normalizing the process and fostering self-acceptance. Transcript Voice Over: Welcome to the CF Strong Podcast. CF Strong 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: Hi everyone. Today we have a quick fire, one answer, one question podcast with Kate, a CF nurse. Today we'll be asking the questions that are kind of difficult to discuss or might be a little bit embarrassing as well. So a tricky situation that I know myself went through growing up was trying to balance my CF responsibilities such as taking my medications and also hanging out with my mates and doing all the things teenagers want to do. Do you know the best way to balance this out and what risks are right to take? KJ: I can't say that I know the best way to balance it out because it's so individual and it's where you're in your life and what you're up to. But my only answer I really give to people is to normalize your CF. CF is not who you are and it doesn't define you, but it is that big part of you. And wanting to fit in with your mates and being independent from your family, they're really natural parts of life. So something that any adolescent experience is not just people with CF but being adherent, so sticking to your treatment regimens as much as you can, enables you to do all that stuff with your mate. If you don't look after yourself, if you don't take your meds, such as your orkambis or your triamcinolone or your CREONs or whatever it may be, you know that there's those side effects. So we're talking about the bloating, the stinky farts, the feeling unwell, feeling full, loss of appetite, decreased body mass index, all those sort of things that associate with poor health. So then you actually can't go out and do those things with your mates and keep up with them. Can you fit in, make sure that you do most of your medications in the morning before you get up and about and go to school or to go out to catch up with your mates, etc. Can you do your physio before catching up with them or that incidental physio, when you're catching up with a mate instead of just sitting there playing games or going out to eat. Could you do it as a physical catch up? Can you go play some sport? Can you go for a walk? So you're doing incidental physio that you don't actually have to time everything else into the day. So you've done 20 minutes of higher level physio. Can that decrease the amount of physio you need to do at home as well? I always say what's worse taking a couple of capsules, actually something that's been spoken about a lot lately is a lot of people, because they're well and feeling well, they hate taking their medication in front of their friends because it reminds them they have CF. And they don't want to take their CREON. But I always come back to the fact of taking a couple of capsules. It may be three or four that you have to take with your meals.

In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss sex and protection for people living with CF. Kate emphasises the importance of safe sex practices for everyone, as individuals with CF face the same risks of contracting sexually transmitted diseases. She provides insights into the potential impact on health, fertility, and the transmission of diseases, highlighting the need for protection in various types of sexual activities. Kate discusses contraceptive options, including condoms, intrauterine devices, and hormonal implants, and encourages open communication with healthcare teams for personalised advice. Transcript Voice Over: Welcome to the CF Strong Podcast. CF Strong 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: Hi everyone. Today we have a quick fire, one answer, one question podcast with Kate, a CF nurse. Today we'll be asking the questions that are kind of difficult to discuss or might be a little bit embarrassing as well. So we've talked before about fertility and having children with CF but I want to now talk about if I need to use protection when I have sex. KJ: Yeah. So being a good child of, growing up in the naughties when all the sayings were around, I grew up with a saying, if it's not on, it's not on. And no glove, no love. So they're those great sayings that were out there. But so using protection during sex, whether it be boy, girl, girl, girl, boy, girl, whether it's oral, vaginal, anal, or any other combinations of things that I don't know about you do need to use protection. So people with CF are at exactly the same risk as everyone else of contracting sexually transmitted disease. And some of this stuff is not only embarrassing, such as discharge, etc., but it can also affect your health, your fertility, especially in females, and it can be lifelong. So even though a lot of guys think, well, I can't get a chick knocked up, in a very simple way of saying it, but I can't get someone pregnant because I have the incomplete vas deferens and I don't shoot out sperm. It doesn't mean that, there's still that two to 3% chance that you can actually get a girl pregnant naturally. But it's also, you're still at risk of getting sexually transmitted diseases such as herpes, chlamydia, gonorrhea, etc. So that's why it's really important that you do look into using protection, whether it be condoms, which is the number on recommendation, but for females, there are other options out there as well. So it's worthwhile talking to your team, especially with some of the gene modulators like orkambi, we used to talk about it affected the oral contraceptive pill. So we used to talk about other methods of contraception as well. So, like I said, your condoms, your intrauterine devices that are inserted into the vagina that reduce the risk of getting pregnant. And also the implant on which helps regulate the hormones. But as I always say to everyone, just remember, safe sex equals no regrets. Voice Over: Thanks for listening to this episode of the CF Strong Podcast. Make sure you subscribe on your favourite podcast listening platform so you don't miss the next episode. And if you enjoyed this podcast, we'd really appreciate if you could leave us a review. It helps other people find CF Strong, or share us with your friends. Also, a quick reminder that the views expressed in the CF Strong podcast may not be reflective of Cystic Fibrosis Community Care's viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia.

In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss whether the kids of those living with CF, will get CF too. Kate explains the recessive nature of the CF gene, clarifying that for a child to have CF, both parents must carry or have CF mutations. She discusses the different scenarios, explaining that if both partners have CF, there's a 100% chance of the child having CF. If one partner is a carrier, the chance is 50%, and if both are carriers, there's a 25% chance. Kate encourages individuals to undergo genetic screening when considering starting a family, providing valuable insights into the potential outcomes. The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='7_15';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Content Feedback","created_at":"2022-12-23 13:13:17","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670298733697","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/7junc","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","public_link_key":"7junc","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_167029873369...

In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss having kids while living with Cystic Fibrosis. Kate highlights the advancements in medical technology, gene modulator therapy, and improved overall health, leading to increased fertility among CF patients. She discusses the challenges and options for both males and females and the positive impact of gene modulator therapy on female fertility. The episode aims to educate and dispel misconceptions about parenthood for individuals with CF. The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='7_18';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Content Feedback","created_at":"2022-12-23 13:13:17","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670298733697","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/7junc","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","public_link_key":"7junc","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670298733697","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes","value":"Yes","calc":"",

In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss late development and periods while living with Cystic Fibrosis. The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='7_21';form.settings={"objectType":"Form Setting","editActive":true,"title":"CFStrong Transition - Content Feedback","created_at":"2022-12-23 13:13:17","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670298733697","please_tell_us_1670305025430","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/7junc","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","public_link_key":"7junc","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670298733697","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes","value":"Yes","calc":"","selected":0,"order":0,"settingModel":{"settings":false,"hide_merge_tags":false,"error":false,"name":"options","type":"option-repeater","label":"Options Add New Import","width":"full","group":"","value":[{"label":"One","value":"one","calc":"","selected":0,"order":0},{"label":"Two","value":"two","calc":"","selected":0,"order":1},{"label":"Three","value":"three","calc":"","selected":0,

"CF makes us resilient," In this episode of the CF Strong podcast, co-host Sam Lefoe catches up with Rafi to discuss life with Cystic Fibrosis.   Rafi, 41, was diagnosed with Cystic Fibrosis at birth. However, he says CF gave him a unique perspective on life and death, which fueled his curiosity and desire to explore. This exploration led him to storytelling through photography and filmmaking, allowing him to share his life story and experiences. One of Rafi’s notable projects is a hip hop album titled "Life Expectancy," which delves into the complexities of living with CF. The album also includes a documentary called "Breathe," which offers an intimate portrayal of the challenges faced by individuals with Cystic Fibrosis. During the conversation, Sam and Rafi find common ground in their shared experiences as people living with CF. They discuss the various challenges they've faced and the resilience they’ve developed as a result. The duo also touch on having siblings with CF, life expectancy, and coping mechanisms, before offering some advice and insights to younger people living with CF.

Murray on transplant In this episode of the CFStrong podcast, we speak with Murray who had a double lung transplant ten years ago. We discuss Murray's experience pre and post-transplant, how he managed the mental and emotional side of transplant, what he's been up to for the last decade and his advice for approaching transplant. Transcript   Coming soon. This podcast was published in November 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. 

Tony on clinical trials Curious about clinical trials? Interested to learn more about how to take part? Keen to hear from someone who has been there and done that? In this episode of the CFStrong podcast we chat with Tony about his experience getting involved in clinical trials. Tony shares his experience and his advice for anyone interested in putting their hand up for a clinical trial. ”Look, I would say it's important they do the homework, read a little bit about the medication, if you can. Nine times out of 10, it's there's nothing about on the internet, but in saying that the hospital staff, you know, or the clinical staff or whoever the person that's helping you with the trial, they give you enough information, to give you a very good understanding of how the drug works and what the background is behind it. I would basically make a list of questions and I would ask, you know, the clinical trial staff, all the questions and concerns I have. 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. Kirby: Hello, I'm Kirby and in this episode of the CFStrong podcast, we're talking with Tony about his experience participating in clinical trials. Thanks so much for joining us today, Tony. Can you start by telling us a little bit about yourself? Tony: Hey, how you going. So, I'm Tony Hanna. 39 years old, live with cystic fibrosis. I live in Melbourne, Victoria. Kirby: Awesome. Thanks, Tony. And yes, thank you so much for joining us. Let's chat a little bit about clinical trials. So first off, what is a clinical trial? Tony: Basically, a clinical trial is a research study. It's performed on people who basically basically want to try out different drugs or, you know, hospitals or medical fields or even companies. They want to try different drugs. So, they put you in a study where a drug is trialed on you. And basically, that's that's a little bit about what a clinical trial is. Kirby: And when did you first participate in a clinical trial? When was your first one? Tony: Um, my first clinical trial would have been? I was about 25 years old. Yeah, I was 25 years old. That was my first clinical trial. Kirby: So that's about 15 years ago, roughly. Yeah, Tony: Yeah. Yeah. Wow. Kirby: And how many trials have you been a part of in the last 15 years? Tony: I've actually, I've done three in the past. And I'm actually doing one at the moment so four in total, including this one. Kirby: Can you tell us about one of the clinical trials that you have been on in the past? I know we can't talk much about the one that you're on at the moment. But can you tell me about one of the trials that you've been on in the past? And talk to me about what what that whole experience was like? Tony: Yeah, yeah. Look, the experience, it's overwhelming. It's a, it's a good feeling. It's definitely going into a trial, you, you question it, it's normal. And once you're in the trial, it's like you're in the zone, you know, things are going good, and you feel good about yourself. For me, you know, when I did my last trial, which would have been about, was pre COVID, it actually felt, felt good. Going in there was overwhelmed. A little bit hesitant. But with reassurance, I kind of went in with, you know, basically, a lot of knowledge, it was a good feeling, exciting feeling. Straight off the bat, I felt a change and improvement. This was an inhaled medication, which I did. Definitely,

Sinus and CF In this episode of the CFStrong podcast, we discuss sinus and CF with ear, nose and throat specialist, Dr Catherine Banks; president of CFPhysio and experienced physiotherapist, Jen Hauser; and co-host of the CFStrong podcast and adult with CF, Sam Lefoe. The wide-ranging conversations covers just what our sinuses are, what the symptoms of sinus disease are and why it can be challenging to diagnose for people with CF. We also cover what the treatment options are and where to find more information. Transcript   Coming Soon. This podcast was published in October 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.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_9';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.","recaptchaConsentEvent":"Accept reCaptcha cookies before sending the form.","currency_symbol":"","beforeForm":"","beforeFields":"","afterFields":"","afterForm":""};form.fields=[{"objectType":"Field","objectDomain":"fields","editActive":false,"order":1,"idAttribute":"id","type":"listradio","label":"Did you find this information useful?","key":"did_you_find_this_information_useful_1670301195052","label_pos":"above","required":"","options":[{"errors":[],"max_options":0,"label":"Yes","value":"Yes","calc":"","selected":0,

Bryce on travelling with CF Travelling with CF can sometimes feel daunting. There's a lot to think about. But Bryce, a teacher from NSW who lives with CF, says the effort is more than worth it. In this episode, Bryce chats about travelling with CF, the tips and tricks that worked for them and their advice to anyone wanting to travel. Transcript Coming soon. This podcast was published in October 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. 

CFPhysio and navigating fatherhood part 2 This episode of the CFStrong podcast is thanks to our collaboration with CFPhysio This is the second episode to navigating fatherhood with CF. Sam, a young man with a dedication to his daily routine, and his health shares with us some of his journey with CF. Sam, who has a very full plate of life, on top of juggling a chronic health condition walks us through some of the challenges, the ups and downs, and the decisions when starting a family. Sam is honest in sharing his experiences learning how to prioritise the things that bring him joy whilst upholding the tasks that keep his health. CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. This podcast was published in July 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.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_15';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed to submit the form.",

CFPhysio and navigating fatherhood part 1 This episode of the CFStrong podcast is thanks to our collaboration with CFPhysio Sam, a young man with a dedication to his daily routine, and his health shares with us some of his journey with CF. Sam, who has a very full plate of life, on top of juggling a chronic health condition walks us through some of the challenges, the ups and downs, and the decisions when starting a family. Sam is honest in sharing his experiences learning how to prioritise the things that bring him joy whilst upholding the tasks that keep his health. This first episode join Sam and his physiotherapist Robyn as he shares some of his early life with CF and his health journey. CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. This podcast was published in July 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.  Notice: JavaScript is required for this content. var formDisplay=1;var nfForms=nfForms||[];var form=[];form.id='6_18';form.settings={"objectType":"Form Setting","editActive":true,"title":"Feedback","created_at":"2022-12-06 15:30:51","form_title":"Feedback","default_label_pos":"above","show_title":"0","clear_complete":"1","hide_complete":"1","logged_in":"0","wrapper_class":"","element_class":"","key":"","add_submit":"1","currency":"","unique_field_error":"A form with this value has already been submitted.","not_logged_in_msg":"","sub_limit_msg":"The form has reached its submission limit.","calculations":[],"formContentData":["did_you_find_this_information_useful_1670301195052","please_tell_us_1670818009392","if_other_please_specify_1670818270750","submit_1523909373360"],"drawerDisabled":false,"allow_public_link":0,"public_link":"https:\/\/cfstrong.org.au\/ninja-forms\/6ntcy","embed_form":"","changeEmailErrorMsg":"Please enter a valid email address!","changeDateErrorMsg":"Please enter a valid date!","confirmFieldErrorMsg":"These fields must match!","fieldNumberNumMinError":"Number Min Error","fieldNumberNumMaxError":"Number Max Error","fieldNumberIncrementBy":"Please increment by ","formErrorsCorrectErrors":"Please correct errors before submitting this form.","validateRequiredField":"This is a required field.","honeypotHoneypotError":"Honeypot Error","fieldsMarkedRequired":"Fields marked with an * are required","conditions":[],"public_link_key":"6ntcy","ninjaForms":"Ninja Forms","fieldTextareaRTEInsertLink":"Insert Link","fieldTextareaRTEInsertMedia":"Insert Media","fieldTextareaRTESelectAFile":"Select a file","formHoneypot":"If you are a human seeing this field, please leave it empty.","fileUploadOldCodeFileUploadInProgress":"File Upload in Progress.","fileUploadOldCodeFileUpload":"FILE UPLOAD","currencySymbol":"$","thousands_sep":",","decimal_point":".","siteLocale":"en_US","dateFormat":"m\/d\/Y","startOfWeek":"1","of":"of","previousMonth":"Previous Month","nextMonth":"Next Month","months":["January","February","March","April","May","June","July","August","September","October","November","December"],"monthsShort":["Jan","Feb","Mar","Apr","May","Jun","Jul","Aug","Sep","Oct","Nov","Dec"],"weekdays":["Sunday","Monday","Tuesday","Wednesday","Thursday","Friday","Saturday"],"weekdaysShort":["Sun","Mon","Tue","Wed","Thu","Fri","Sat"],"weekdaysMin":["Su","Mo","Tu","We","Th","Fr","Sa"],"recaptchaConsentMissing":"reCapctha validation couldn't load.","recaptchaMissingCookie":"reCaptcha v3 validation couldn't load the cookie needed ...

Kate on parenting and CF In this episode of the CFStrong podcast, we speak with Kate about navigating CF and parenting. We discuss Kate's journey to becoming a parent, how she manages her health while parenting and how she talks with her son about CF and what the future looks like. ”Now as he's a teenager, it's easy. But when he was little, I really focused massively on my health as well as parenting... you look at people that have got multiple kids, child three or four just fits in, right. So that's sort of the approach I took with my health and CF. So almost, you know, bizarrely, almost like my first child is CF, and my second child is my son. So he just had to fit in around it, which sounds really ruthless. But you know, without my health as a parent... all the wheels are gonna fall off. So I've got to keep as many wheels as I can, on myself, so I can do the job as well as I can. 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. Kirby: Hello, my name is Kirby. And in this episode of the CF strong podcast, we're talking with Kate about CF and parenting. Thanks so much for joining us, Kate, can you start by telling us a little bit about yourself? Kate: Hey, Kirby. Um, so as you said, my name is Kate. And I'm 52. And I've got CF and I live with my husband and my son. I've got a 15 year old son. And I work part time very part time as a social worker. Kirby: So you're a mum? Kate: Yes. Kirby: Did you always want to be a mum? Kate: Good question. Look, yes, I did. But when I met my husband, I was 32 I think. So I decided from a CF perspective, I'd missed the boat. So the poor man, we went on our first date. And we actually met a person, well intentioned friends. Anyway, we went on our first date, and I just thought, Oh, this is ridiculous. I'm not going to start a relationship with someone who wants kids if I can't have them. So, you know, towards the end of our first date, I'm going look, what are your thoughts on having kids? And he's going yeah, great. Great. And I'm going right, so this has to be pretty much a last date. Because I'm too old to have kids from a CF perspective. Anyway. And then he was going well, it's a first date, let's just wait and see how we go. But here I was being really, I guess black and white and thinking, I don't want him to get attached like, I don't want to get attached to him, if it's gonna, if kids and my ability not to have them is going to be a deal breaker later. So he's just going well, let's just see you know how second date goes. And we can go from there. But yeah, so I did want kids, but I had decided that at 32, I had sort of missed the boat. Yeah. Kirby: And then what happens next? Because obviously, we all we know now that you have a teenage son, so what happened next? Kate: So what happened next? So we dated for a while and and then we started talking some more about kids. And he was going well, I don't see why. You know, you're saying you can't have kids, but you're so healthy. And also going well, you know, average life expectancy with CF is 37 and you're being 32. You know, that's not an ideal situation of kids. But obviously, I was thinking, I mean, I was really well. And I was thinking that 37 wouldn't apply to me. But I was still, you know, keeping an open mind. So then we started to do research, we were actually, we're both from a science background. So even though I'm a social worker,

Bryce on work, family and CF In this episode of the CFStrong podcast, we speak with Bryce, a teacher from NSW, about work and family and how he manages both while also taking care of his health. ”A lot of people who are coming in to having a family think that they need to be on top of it all the time, you just, you can't be and it's hard. And it's tough. And it's not going to be easy all the time. There's certain things you can do to make it easier. But sometimes I'm just not and it's, something's got to give. And you've got to make the decisions and concessions as to what's going to give. But always trying to make sure that health kinda comes first. 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: Hello, everyone, and welcome to the CFStrong podcast. My name is Sam and today we have Bryce, Bryce would you like to introduce yourself. Bryce: Yeah, absolutely. I'm on the man. I go by he/him. I am 33. I'm a secondary science teacher, I teach chemistry as kind of my major area. And I have cystic fibrosis. Sam: Lovely to have you on the show. Can you just start by kind of talking to us about your job and how did you kind of figure out that teaching was what you wanted to do with yourself. Bryce: Um, I've always kind of known that I wanted to help people, I didn't really know what that really looked like. I spent a lot of time just thinking about how I could go about helping people. And that kind of changed over time. As I kind of went through high school, I kind of thought about all the different options. And I thought that maybe nursing or being in the police force or something, is something I could do. But with my condition, I didn't think either of those two kinds of things were kind of best suited to the work that I would end up doing. So I ended up switching to-- I really enjoyed science was the main big thing. I really, really enjoyed science had some great teachers, and it's just kind of how my brain works. Not very good at English, any of those kind of written works. And so I kind of moved towards that way. And I just said, how could I help people and I think teaching people, I think I had something to give, and something to offer to others. So that's how it all started. Sam: Excellent. So just going back to what you were saying, do you think that obviously having cystic fibrosis is a quite a big thing to consider when you're looking at their career path, do you believe that really affected how you went about, say, looking for a career? Bryce: This is an interesting thing, I think I was quite privileged to have a really, really supportive household as I grew up, and not to say that other people don't, I just think I'm very lucky. I was kind of brought up with the mentality that regardless of my condition, I'm going to be here forever, like a normal person, and I was treated accordingly. And the expectations were that regardless of my condition, I'll need to be exercising regularly, I'll need to be, you know, doing all the things that everybody else was doing. And that included work. The main consideration was more about what germs could I pick up. And so something like nursing, which I was really interested in having a bit of a background in science just wasn't going to work just because of the exposure at the time. And it just didn't seem like the right thing for me. It could have been, maybe, but it just wasn't going to work.

CF and the NDIS In this episode of the CFStrong podcast we speak with Ben from Trusted Care, a subsidiary of CF Queensland, about the NDIS. We explore what the NDIS is, how people with CF are accessing support from the NDIS and what advice Ben has for anyone thinking about applying for the NDIS. ”It's about educating people in the NDIS. That's real advocacy, helping people become educated and better equipped to understand and learn the way to speak about the NDIS, the way to approach the NDIA, the way to access all of that. It's all an education process for people. Advocacy is education in my opinion. And it's a really important part of the NDIS. Ben, Trusted Care 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.  Kirby: Hello, my name is Kirby. I'm the digital content producer at CFStrong. And I'm joined today by Ben Smith, the head of business development at Trusted Care, a subsidiary of CF Queensland for a discussion all about the NDIS. Ben, thank you very much for joining us today. Perhaps you could introduce yourself and tell us a little bit about Trusted Care.  Ben Smith: Thanks Kirby. Yes. So, I started with Trusted Care late last year. So, Trusted Care was created by Cystic Fibrosis Queensland, and what they saw was a need for NDIS service provisions within the cystic fibrosis community. So how it's broken up into work with the cystic fibrosis community is that the service provision side of it, so our support services and any direct service that we work within the NDIS and with participants, it's rolled out across the whole of the NDIS sector.   So, any person can work with Trusted Care. However, at the same time, a lot of our services are aimed at the cystic fibrosis community. So, when the idea was first created, and when it was implemented, a lot of the services, which is a little bit of a mishmash of services for a provider, it was actually based on the cystic fibrosis community and the needs in that area.   So, all of the revenue that's raised through Trusted Care goes directly back into the charity, Cystic Fibrosis Queensland. And aside from the NDIS service provisions, there is a lot of work that goes on within the cystic fibrosis community around the advocacy to actually access the NDIS.  So, unfortunately for a lot of people with cystic fibrosis, it's been a struggle to actually access the NDIS. So, what Trusted Care, what myself is here for is actually to create a bit of an avenue to gain some understanding around the NDIS. Not everybody with cystic fibrosis is going to be able to access the NDIS, but there is a really large cohort that should really have access there.   So, it's working with the community to kind of give them a little bit of a better understanding around the NDIS, and what improvements in their life they can actually gain from NDIS funding.  Kirby: Let's talk a little bit about the NDIS. I'm going to ask you a really big question so, feel free to give me a very simple answer. What is the NDIS?  Ben: The NDIS, well, it's an acronym, the NDIA love in acronyms. So, the NDIS is the National Disability Insurance Scheme. It is overseen or governed by the National Disability Insurance Agency. So many years ago, the disability services were governed state by state. So, each state had their own disability funding, and they would grant those funds to various providers within their own state.   The NDIS is a federal scheme. So, it works in every state and territory, and it doesn't matter what state or territory you are...

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 posit...

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, 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.

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.

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.

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 CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. 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 readers.

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, you may not notice all the negative side effects because you don't know otherwise. And feeling ordinary pretty much all the time sort of doesn't give you a lot of motivation to sort of keep on top of those treatments. Especially if you're not, like, you're taking, you get prescribed another thing that you've got to take, another thing, and it just adds to that list, but you're not really feeling the positive effects of it, you tend to sort of lose motivation to maybe keep on top of it. So yeah,

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 CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more. 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.

Mike on strength of body and mind In this episode of the CFStrong Podcast we speak with Mike about how exercise and bodybuilding have helped him both physically and mentally. "For me, it became a passion. After only six months to a year of doing it, when I was about 16 years old, it became almost an obsession, I would say. And the benefits were just so massive that it was, it was so easy to maintain, and to keep doing it, you know. When I started training, when I was 15, I weighed 44 kilos. And by the time I was 19, I weighed 88 kilos. That's the heaviest that I ever weighed when I was bodybuilding. The change in that period in those four years was dramatic, really dramatic, just in so many ways, it was unbelievably helpful. And literally had I not done that I wouldn't even be here. Bodybuilding literally saved my life." —Mike Transcript Deidre Gorrie: Hi everyone, and welcome to the CF Strong Podcast. My name is Deidre Gorrie, and I am 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 have the pleasure of welcoming Mike to the CF Strong Podcast series. Mike, would you like to tell our audience a little bit about yourself, please?  Mike: Hi guys. My name is Mike I'm 36 years old. Obviously, an adult living with cystic fibrosis in Western Australia. I'm originally from New Zealand, I've been here for about 13 years now though so Aussie-ish, I guess. Yeah, I just you know, I thought I'd do this today with Deidre in the hopes that what I can share through my experience can help as many people as possible.  Deidre: Ah, fantastic. Well, thank you, Mike. We really are grateful that you're sharing your time and your experience with us. Today we thought we'd talk around the topic of strength of mind and body and what does that really mean? And Mike has had quite the experiences, and I think that's an understatement in saying that, but I would really like to, with your help, Mike unpack what this means. So how old were you when you first realised the importance and the significance that exercise can play on your life, Mike?  Mike: I was 15. So, when I was 15 years old, I was a very typical male with CF at that age, I was deathly skinny. I didn't do any exercise. I struggled to eat. Basically, things kind of went wrong a little bit that year. I ended up in hospital for a very, very long period and as a result of that, I ended up with a nasal gastric feeding tube for about eight months just because I was just so small and struggling to put on weight as we do. On the back of that so after that eight months of having the nasal gastric tube, and I just decided that I wanted to try and do something to bid in my situation, so I joined my local gym and started training.  Deidre: And what came out to joining your gym and starting training? Like, did you start to notice anything physically or mentally?  Mike: Definitely, definitely both. I was very, very fortunate. I went to the gym and I'd never done any form of training before, so I was pretty green and I'd been there for a little while, a few weeks, maybe with little help from the trainers, kind of guiding me as to do this and do that kind of thing. I met this guy who was an ex-body builder and he was probably about the same age as I am now.

This podcast is raw, honest and reflective of the challenges people living with CF have to go through when disclosing their illness to loved ones and acquaintances

This podcast is raw, honest and reflective of the challenges people living with CF have to go through when disclosing their illness to loved ones and acquaintances. Sam talks openly about how he finds it difficult to raise his illness with friends, the responses he has received, and how he’s coming to terms with who he is. Sam is passionate about sharing his journey to help those who are in a similar situation to become more confident with accepting themselves as they are. With his parents support, Sam realised that it was more important to accept who he was, rather than focusing on letting CF define him. This shift in thinking was triggered by an acute episode of feeling very unwell from dehydration at a Music Festival. He hit rock bottom when he was found in a hospital tent by his friends who didn’t understand what had happened and why his health declined so quickly. Since then, Sam has made a decision to accept his disease and bring everyone into this life.  Although still young, Sam is wise and insightful. He strongly believes that those struggling with disclosing their illness need to be patient with themselves, OK with themselves and appreciate the time this takes.

  This podcast is raw, honest and reflective of the challenges people living with CF have to go through when disclosing their illness to loved ones and acquaintances. Sam talks openly about how he finds it difficult to raise his illness with friends, the responses he has received, and how he’s coming to terms with who he is.

Living Remotely In this podcast, Dan talks about the benefits and challenges of living remotely with CF. He chats about his adventurous life with his good friend Shaun. Dan talks about the logistics of managing his health from growing up in regional Victoria, then moving to the Northern Territory after completing his studies, over to Ireland and briefly touching down in Nepal. Dan's journeys are interesting and he shares the comforting knowledge that careful planning and patient care from health professionals, in Australia and overseas, have always supported his travels. Want to learn more about Dan?  Read about his adventures here  Read the transcript of this podcast below: Shaun: Hi, I'm Shaun Nichols. I am 33 years old from Melbourne Australia, and I am living with cystic fibrosis. I am so excited to be hosting this podcast for the incredible new website CFStrong, where I have the amazing opportunity to talk to adults living with cystic fibrosis all across Australia. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear real first-person stories, conversations with health professionals, friends, and partners, just a heads up the guests in this episode may share their personal views about treatments and health management. Please, remember this is not medical advice, and you should always follow the advice of your clinic team regarding your health. Shaun: Sit down, plug your earphones in, make a cup and enjoy. Good afternoon, Dan Ryan, how are you? Dan: Good. Thanks, Shaun. How are you? Shaun: I'm doing really, really well. Happy 2021. Dan: Yes, you too. Thanks for inviting me along. Shaun: Of course, not a problem, so pleased to have you on. Just to first off do you want to just tell us a little bit about yourself? Dan: I'm 33 years old diagnosed with CF at I think it's just short of two years old and I currently live in Regional New South Wales on the border of New South Wales and Victoria. That's kind of given a background for me aside from a few trips here and there. This is always been home for me. I have had various stints in different places. We'll probably talk about later, but I guess that's me. Shaun: Excellent. You grew up essentially in the country in Regional Victoria. Can I ask, where did you have your admissions? Dan: The bulk of them were Wangaratta. Wangaratta Advice Hospital. Obviously, I was diagnosed at the Royal Children's you know, for people who are listening to this rural children's in Melbourne. Geographically even around New South Wales, geographically, I was closer to Melbourne. That was where the diagnosis was and that's where my specialist treatment has always resided or has always been in Melbourne. The bulk of my admissions whilst I was being treated under a pediatrician were in Wangaratta, the Wangaratta Based Hospital. Shaun: Obviously, growing up, living in, and having admissions in a regional sort of setting in a regional town, what do you think some of the benefits of living in a regional area are and if there are any, what do you think some of the challenges might be? Dan: Look, there's a lot of benefits really, to be honest, I think they probably, at least when you're young outweigh the negatives, I was fortunate enough to be like a bit of a probably an anomaly really at a Regional Hospital. There aren't many young kids with CF having you know, tuneups and two or three-week admissions in some of our smaller hospitals around the country. They're more so centered in places like big super hospitals, like The Alfred and Royal Children's. I think that meant that I probably had a lot more people taking a wider interest in my health and wellbeing. That's probably the main thing that stood out. I think it's really important though, to point out that regional hospitals probably aren't as well equipped as often the reputation goes. I think if you've got a doctor that's willing to treat you or at least a team who were willing to t...

CFStrong: Dan

In this podcast, Kristy shares her experience of going from consistently good health for most of her life, to being on and off the transplant list. Kristy talks about her love for working and keeping incredibly busy, from running restaurants, working as a youth worker and to now studying social sciences. Kristy also shares her story on becoming a mum and the challenges and blessings of raising a child with a chronic illness. Kristy is full of gratitude, warmth and wonderful energy. We hope you enjoy her story.

In this podcast, Lauren shares her experience of life with cystic fibrosis. Although still young, she has had an amazing career progression from working in law, to film production, then a Department of Foreign Affairs and Trade (DFAT) government role that took her overseas, to today as she starts her own business. While she was working for DFAT, she got a posting to Port Vila in Vanuatu in the South Pacific, and she talks about the logistics, challenges and positives of her time living overseas with cystic fibrosis. She also discusses her views on natural therapies and what she finds complements her medical care to optimise her health and wellbeing.

Peter, now in his 50s and a Sydney native, talks about his lifetime commitment to dancing, both practicing and teaching, and now running Australia’s largest Showcase dance competitions. Dance, both competing and working, has taken Peter to China, Malaysia and the USA. He candidly shares his life story including being adopted, struggling with weight gain growing up, being homosexual with CF, establishing his business and his perspective of embracing hospital admissions with a positive mindset.