CFStrong: Inform. Educate. Empower.

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.