CFStrong: Inform. Educate. Empower.

In this episode of the CF Strong podcast, Zach talks about his journey with CF, the challenges he's faced and his experience getting a liver transplant. He also opens up about Trikafta and what starting the medication has been like for him so far.

 

In a heart-warming turn of events, Zach, who is only 13-years-old, poses some questions back to the CF Strong podcast co-host Sam Lefoe, who also lives with Cystic Fibrosis. Together, they bravely delve into the profound difficulties of navigating life with CF. They also talk about dreams for the future and hobbies, before finally offering encouragement to other listeners living with Cystic Fibrosis.

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.

Sam: Hello everyone and welcome back to the CF Strong Podcast. My name is Sam, and today with me I have Zach. Hey Zach, thank you so much for joining us today. Do you mind just telling everybody a little bit more about yourself, maybe a bit of your hobbies, your age, and what you're up to?

Zach: Yeah, so my name is Zach Haman and I'm 13 years old and I have CF and my favorite hobby is basketball. I like doing sport and my favorite subject in school is probably science and I like speech and drama. It's fun and like doing a lot, like going to the beach and having a swim, like swimming in the pool.

Sam: So you're from Queensland, aren't you? Whereabouts in Queensland?

Zach: Gold Coast.

Sam: Gold Coast. Ah, lovely. Great spot. And you said you like science. Is that your favorite class? What about science do you like so much?

Zach: Oh, I like doing the potions and like how you can do like elephant toothpaste and there's all different like types and you got to make sure, you got to listen to the teachers to make sure what you got to put in and not what to put in and you do it in order basically.

Sam: Yeah. Sounds pretty complicated. I was never very good at science. So you said you like playing sport as well. Was it basketball that was your favorite one? What position do you play in basketball? Are you more like a defender or more of the attacker?

Zach: I think probably an attacker even though I'm so tall. I like doing the attackers because like you get to break people's legs and you get to suit.

Sam: Yeah. Yeah. Yeah. Sounds very detaining. And you said you're quite tall, so does that give you a bit of an advantage when you're playing basketball?

Zach: Yeah. For defending, yeah, it's really good advantage with blocking the ball.

Sam: Yeah, right. I used to play basketball too when I was younger, but I was never that good because unfortunately my height was never quite as good as the other boys' height. But hey, we tried our best. Now Zach, we got you into the podcast today because you've actually had quite the story the past couple of years of your CF journey. So was it a few years ago that you had a liver transplant? Is that correct?

Zach: Yeah, it was three years ago when I had my liver transplant three years ago....

Sam: Okay, so quite a while. And I can imagine that would've been a very, very hard time for yourself.

Zach: Yeah, it was.

Sam: Yeah, I bet. So I just wanted to ask you one question about that. Do you mind talking to me about your liver transplant and what led up to that? So kind of the few years beforehand, what was kind of going on and then finally when you got your liver transplant, how did that go?

Zach: Yeah, so I used to take these like medications that like make me go toilet and vomit a lot. I would always have to go to the hospital to do put a camera in your mouth and it would go down and chec...

Sam learnt that transitioning to adult care doesn't mean going it alone. It just took him a while to figure it out.

 

Sam felt like he had to take on everything himself. From the age of 15 he started taking his 4-hour trips to the Children's Hospital alone, Mum and Dad no longer welcome.

He reported the doctor's feedback to his parents, the good stuff only.

He was offered to talk to a psychologist but didn't think he needed it.

When he eventually moved to an adult hospital, he felt the cocoon of the children's melt away. He didn't like the new adult hospital. Although he continued to go to his appointments, they were rushed. His focus was to get in and get out as quickly as possible, not ask any questions or take up any time.

When his health eventually started to decline, he decided it was time to work things out with his health team, his family and friends. That was his turning point.

Listen to the Podcast to hear all about Sam's journey.

 

Different perspectives:

Everyone's experience is different. Yesterday I spoke to Jacob, who also lives in a regional town and travels hours to get to his appointments. I asked him about his experience in transitioning from paediatric to adult care. His response? "It was pretty smooth. I took my parents with me and continued to ask lots of questions.'

I asked Jacob for his advice on transitioning. "There's nothing to really fear. The doctors all have you in their best interests and I appreciated being talked to like an adult. Maybe they talk to you a little more abruptly and put a little less sugar on it, but when it comes to your health, that's what you want."

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.

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"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.

Archie on work and CF

In this episode of the CFStrong podcast, we speak with Archie, a former teacher, now marriage celebrant and musician, about all things work. We chat how Archie navigates work and CF including discussing CF at work. And Archie shares his advice for managing work and CF.

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.

Sam: Hello and welcome to the CF Strong Podcast. I am Sam, and today we have Archie. Hi, Archie, do you mind just telling us about yourself?

Archie: Yes, thanks for having me, Sam. My name's Archie. I have cystic fibrosis myself. I have the double Delta 508 gene mutation. I'm 29 years old. I'll be 30 in a couple of weeks. I do a couple of different things. I'm a marriage celebrant, I'm a professional musician, I play the saxophone and I also work in dispute resolution at the telecommunications Ombudsman. I've got a couple of different hats.

Sam: That's quite a good resume you have there. One, the first thing that kind of stands out to me there is you said you're a saxophone player. I can imagine having to be a musician in regards to like instrument such as saxophone. It's quite useful to play the instrument and also use that as a bit of physio as well for your chest and your lungs. Have you found that that's been a useful tool in your physio?

Archie: Yes, absolutely. The whole reason I began, actually, I did my degree. I did a classical undergrad out at Monash on the clarinet. I first started on the clarinet and I actually did my degree. The whole reason why I started when I was so, so young, I think I was about six. The whole reason I started was for that very, that reason of the physiotherapy. It's a technique called resistance breathing, basically just strengthens the lungs and helps with all the clearance of the airways. That was the whole reason, and I guess it just grew into a bit of a love and a passion and now I can't seem to get away from it.

Sam: Excellent. That sounds like a real passion. Does that kind of mix together with your work? You said you're a marriage celebrant. Do you often perform as well or are you mainly just the is it the host of say the wedding reception? Is that kind of the main jig?

Archie: Yes, so marriage celebrancy is basically the idea is that I am the guy who marries whoever is terribly in love. I legally bind these people together for life. I've kind of started that it was actually as a result of Covid, it was a bit of a catalyst for that change away from what I was doing previously. I was I've always been a professional musician and I just figured I wanted to add another string to that bow. I guess if you, if I'm to use another terrible music analogy, I wanted to add that extra skill.

I figured I can actually do the wedding ceremony itself as well as stick around later for the reception or the wedding party and continue as kind of the entertainment playing the saxophone alongside whichever DJ or other band they decide to get on for their party as well.

Sam: Okay. That sounds like a pretty good jig. I'm guessing you also have to be, I guess, an entertainer and also a pretty confident speaker. Do you ever find that you are anxious before doing those kind of things? Especially with like, in regards to cystic fibrosis, like sometimes you control the occasional coughing fit or things like that. Does any of that kind of play into your role?

Archie: Certainly before every performance it's natural to expect a...

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,

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. 

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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. 

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