CFStrong: Inform. Educate. Empower.

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, 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.

Read a transcript of this podcast below:

Keegan: Hi and welcome to the CFSTRONG podcast. 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, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health. My name is Keegan Baca; I'm a broadcaster and a Cystic Fibrosis Community Care ambassador in Victoria.

In this episode, we're talking with Lauren Woolcock. Despite living with CF, Lauren has had a very diverse career. She's gone from working in law to working as a film producer to working for the federal government to now running her own business. In her government role she was posted overseas, and she talks about how she managed her health while abroad. While working in the South Pacific, she learned a lot about their way of life and how that can help your health, whether you have CF or not then she shares that with us as well. Lauren, welcome to the podcast. Why don't you start by telling us a bit about yourself?

Lauren: Sure. So my name is Lauren, I grew up in Melbourne. I was diagnosed with CF when I was a newborn I was born in 1989 and was lucky enough to be born in July. And I think it was February that year that they started the testing for newborn babies here. So pretty much I think three weeks after I was born, I was diagnosed and my parents were informed. After, I had a pretty normal childhood. I didn't really notice my cystic fibrosis or that much. I'm sure my parents did, but I didn't. I just had a pretty normal upbringing, until I was about 18 when I had my first admission. But before that, I was just living a pretty normal life. And even afterwards, really, it's been a pretty normal life for me. Probably a bit of luck and a few other things in there, we are doing at school, CF was in the background a little bit. It's like live life.

Keegan: I suppose. Yeah, it's interesting that it does affect everyone very differently. So you go through your teenage years with it not really bothering you too much, for sure. Probably as these days, it probably affected your parents quite a lot. It's always terrible to find that out and to get that news when you were born. But for the most part, it didn't really affect you a great deal. Obviously, I'm sure there were challenges, but it wasn't always in the foreground for you.

Lauren: Yeah. And I think when you're that age the challenges mainly lie on your family, particularly when you're under adolescence. So when you're doing their formative years of school, it was my parents’ responsibility to let the school know what was going on, how they could best support me, you just as a kid do it. But I don't think I really noticed in the challenges that you face when you're that old, it was obviously more once you get to 18 class that you get a bit more of an understanding of how you actually need to handle your own health and you don't have your mum there beside you being like this is what we need to say. I was probably only 18 onwards that I suddenly went, Oh, I have a feeling I now need to handle somehow.”

In this episode of the CFStrong podcast we speak with Peter who candidly shares his life story including being adopted,  struggling with weight gain growing up, being gay, and establishing his business, and his perspective of embracing hospital admissions with a positive mindset.

 

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.

Transcript

Keegan: Hi, and welcome to the CF Strong podcast. CF Strong 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. But please remember this is not medical advice, and you should always follow the advice of your clinic team regarding your health. My name's Keegan Bakker. I'm a radio presenter and cystic fibrosis community care ambassador. Today my guest is Peter Oxford, a dancer and entrepreneur. He's certainly faced some challenges throughout his life living with CF, but definitely has not let them stop him from some truly incredible achievements with his dance career and his own dance studio. He's traveled the world and industry accolades and inspired many, many young people, including some with CF themselves. That is just scratching the surface. Let's hear the full story from Peter himself.

Peter: I'm Peter Oxford. I'm based in Sydney. I was born here. I've lived here all my life and I'm 50 years old now I would say. I grew up as a dancer and then I operated the dance studio for over 12 years. And during that time I started and created the Australian Dance Championships and that sort of took over the dance studio life and decided to give that up and take on showcase Australian Dance Championships full time. It basically runs my life and has been going for, this is 26 years now.

Keegan: So safe to say you've been pretty successful in that field. Any particular achievements, just career wise or anything that stands out as being highlights?

Peter: As a dancer, I was very competitive as a child. I grew up in the shopping center circuit as a dancer. I went on to be the first Australian to win back-to-back titles in Chicago, Las Vegas, and Orlando at the American dance competitions over there. Then learning about their concept, brought it back to Australia. I've had shows that I've produced and choreographed go to China, Malaysia, the US. I’ve been very successful with my dance studio, with the showbiz kids, the show group I had, and obviously they're moving on to showcase becoming the largest national dance competition and the first of its kind ever created in Australia, giving countless opportunities to dancers, to then progress onto their careers all over the world.

Keegan: That's incredibly impressive. The fact it's not only the success that you've had career wise, but also every travel involved. It's got a very international flavor to it and you've been all over the world and being someone who's had or has CF, I can imagine it would have been a challenge. It's something you've had to actively manage or has it just been in the background?

Peter: It has been in the background. A lot of my travel that I did in my early twenties, I did on my own. I remember going to the States when I was 20 years old and Canada for like four weeks and travelling on my own. So obviously, you know, you have to take care of yourself when you're traveling. That was never sort of an issue. I can't travel, I've got CF or it's going to be hard, but it was just okay, pack up the medication,

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.