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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 take you on, I guess if they’re willing to take the risk, I suppose then generally the job can get done pretty well and various hospital departments.

I’ve even had different hospitals working together in Wangaratta I used to go to you know, I’d get my lung function tests done at the private hospital. It was all covered under Medicare, but in the country, I think people really come together to make sure that they can deliver the best of care. If that means criss-crossing and calling other services within the area, they’ll do it, they’ll make it work.

Shaun: It’s good that you’ve touched on the crisscrossing and also that you have had some admissions in metropolitan Melbourne. Can I ask, do the regional clinics liaise with the metropolitan clinics? If so, how does that work if you are understanding?

Dan: I’m pretty sure that they do. When I was younger I’m not too sure. I can’t really remember. I suppose that’s probably something you’d have to ask my mum or dad, but look, I’m pretty sure that they did. I know, certainly as an adult, that it’s been pretty good. I’ve had a tune-up in Aubury before and I’ve had the start of a tune-up in Alice Springs. I’ve been to regional hospitals quite a bit, and they’re pretty happy to just take your word on things and they’re guided, I guess, by your experience in the hospital system and as a patient with CF. If you’ve got a CF team based in Melbourne or Sydney or somewhere who are willing to liaise with those regional services, then it’s pretty good. I’ve been fortunate enough to have that.

Shaun: Can I ask when, or why do you come to a metropolitan clinic? Obviously, you’ve got options and you’ve stayed in metropolitan hospitals. You don’t have to name the hospital, obviously. Can I ask what brings you to stay at a metropolitan hospital or why you would come and have an admission there or a clinic appointment, et cetera?

Dan: Yes, I think the main reason is probably that, although I’ve been, yes, I guess it goes back to what we just talked about. At least when I was sort of under 20, I was mostly being treated at a regional hospital. There was still that guidance coupled to this question.

Shaun: You done it all. Do you want me to help you? Is there a particular reason why you would say come into a metropolitan Melbourne hospitals? Is it because you need a particular kind of care or is it a particular treatment that only the metropolitan hospitals provide or?

Dan: I think it just became a little bit more difficult to navigate as an adult. I’d always, essentially keep a foot in the door with the Royal Children’s, but as an adult, it was a little bit more, it was just a little bit tricky to organize. No, I think that’s a common experience with CF once you move on from the Royal Children’s, it’s like you’re really out there navigating all of this stuff on your own.

There’s is a bit of help, but in terms of making services say across the state work together and appointments land at the right times and that sort of thing, it’s been easier to go to Melbourne to avoid all the extra stress that comes with that. That’s probably what I’d say.

Shaun: Flashing forward you studied Environmental Science at university after you finished high school, can you talk to us a little bit about how you navigated uni with your health?

Dan: I was really lucky Shaun with uni. Again, I went to a Regional uni. I went to Charles Sturt Uni in Aubrey and they were really accommodating. I think the good thing about being in an adult learning environment is that universities have to take you on your word to an extent or to a degree. I was fortunate enough to have a good team of academics who were happy to accommodate my needs as a student with CF. Once I think once word got out that were really supportive.

Shaun: When you enrolled at university, did you say, send an email to the university lectures or?

Dan: I think I ticked the box on the application. I ticked I’m a student with a disability quick yes. Then clicked medical condition, but look again, it was a small university, so I was pretty able to navigate that system. Even when I went on, I did further study at Vic Uni in Footscray in Melbourne and it was the same experience. It was a much larger university, more metropolitan, but still, I think all my lectures, all my course coordinators and that sort of thing, just happy to accommodate me, you know, as long as they can tell you’re doing your best and trying to get everything in on time. My experience was that that was enough they support that.

Shaun: Once you did access those supports did you actually need them? For example, did you have assignment extensions or did you have assignments modified?

Dan: I feel like I had extensions for almost every assignment I’ve ever done. It wasn’t always you know, I don’t think it was always health-related. I think it’d be part of it was being and naturally very disorganized person. I don’t it all starts to play it doesn’t it? I think definitely when I, if I had a hospital admission or if I was unwell, universities were really flexible within their limits. Getting a medical certificate is every five minutes was a bit annoying and hopefully, COVID is smoothed that stuff out. I don’t know?

Shaun: Who knows? Yes.

Dan: Doctors have surely got far better things to be doing and writing a letter for someone when they’ve got a scratchy throat. Look, it was fine. It was a really positive experience if anything, and really supportive both universities.

Shaun: Now you spent some time in the Northern Territory, which would have been an incredible exciting experience. Can I ask you now having always lived in a regional area, did this give you more confidence when you decided to move to the Northern Territory?

Dan: Yes, I think it probably did. I don’t think I realized it at the time. I guess I was fortunate enough to what my treating clinic has always been Melbourne, my family are relatively close to Melbourne. Whilst I was in the NT and while I was well, until my appointments with my specialists and clinic appointments at the same time and I come home and that sort of thing it did get a bit expensive there for a while.

At one stage I was coming home every three months in the Northern Territory, isn’t a very affordable place to fly in and out of. That did get a little bit expensive there. I probably should have explored it further, but seemed pretty tricky to access the patient travel assistance scheme. Because I wasn’t going to that the Northern Territory is probably more preferred provider of specialist care would be South Australia and my clinic was in Melbourne and I just, it was a little bit tricky. It was kind of, my clinic of choice was Melbourne. I guess, yes, just meant that I worked in the Northern Territory for a long time and saved no money.

Shaun: Obviously there are some people, lots of people that may be listening that may want to take leap and move into state and Northern Territory is quite different than say moving from Melbourne to Sydney or something like that. Can I ask you, how did you manage your health in the Northern Territory?

Dan: I think that the main thing for me was finding or not even finding it wasn’t very hard linking in with the GP who is willing to take you on as a patient who has probably different needs to the patients they treat. I was really fortunate. I fell in with a really good GP and I was living in a remote community at the time.  The fly-in fly-out doctor was also really willing to help, writing my scripts and sending letters to, and from the Alfred where my treatment is usually administered from, and that made a big difference.

I think if I didn’t have GP’s and doctors and sort of allied health staff willing to support me, that it would have been hard, but I mean, yes, why wouldn’t they be willing to support me? I mean, there’s people with, and I think that as you know, coming from the regional parts of some, I wouldn’t call myself that regional, but you know I’m three hours from Melbourne or four hours from Melbourne. There are people obviously across the country who have got various health conditions and just make it work. You have to make it work as a patient and as a doctor or a specialist.

Shaun: Just in terms of sort of the nitty-gritty sides of things that you needed to navigate when you were in the Northern Territory with your health how did you access your meds? You know, did you have to order them in advance? Was there a process that you had to go through for that?

Dan: At the time and I was in the Northern Territory for three years, I got back in 2019, but at the time I was relying a lot on telehealth. I’ve never had a GP say to me are, I don’t know, I’m not really that confident in prescribing you something. It’s always, they’ve generally been guided by say my clinical notes and the correspondence that they’re having with my treating team. It was probably sometimes the Alfred would mail me scripts.

I think I’ve never been desperate. I haven’t been in the middle of the Northern Territory and run out of Creon. I’ve lived in Melbourne for a little while too, and I don’t think I manage it any differently.

Shaun: Essentially the Alfred would be communicating with you via telehealth and you just happened to have been in the Northern Territory and that’s where just like you do with the telehealth, if you’re living, even in metropolitan Melbourne I know for myself, I could telehealth. It was just sort of that way, like what do you need will fax it to the fax pharmacy.

Dan: Pretty much. What do you need? We’ll fax it to the pharmacy.

Shaun: Will post it in mail.

Dan: We’ll post it in the mail. It really was so simple. I was just lucky to have people who were willing to work with me. Like I said before, be guided by my experience and that sort of thing. I think if you were coming from if you hadn’t lived rural or regional before, that may be a little bit daunting, but it’s also it’s reassuring to know that you’re not going to really come across anyone who is not going to try and help you. You know, when the health field, realistically, that’s been my experience anyway.

Shaun: Why did you decide to come back?

Dan: Well, look in the end, I was going to start Symdecko, one of the CF wonder drugs, but that meant monthly appointments, initially. I’d also gotten to the point where I was like, I really liked this place, but I don’t know whether I like it enough to change clinics. It’s like, well, maybe I could do another year, but you know, I don’t really want to change clinics. I ended up just thinking, well, it’s probably better for my health to be closer to a training specialist. Because I still had, whilst I was away for a long time, I did have tune-ups and I did have them in Melbourne, so I came back for them. It was more so it was a combination of a health choice and a lifestyle choice, I guess.

Shaun: You’ve also lived overseas. You lived for a little while in Ireland and you’ve also traveled overseas to Nepal as well. Sort of similar to the Northern Territory question, I suppose, can I ask how did you manage your health while you were in Ireland in Nepal? What did you do beforehand? Did you get sick over there? What did you have to organize?

Dan: Both times I just took lots and lots of medication over with me, so I calculated how much insulin I’d need, how many Creon I’d need on average, and all of my other medications and fill the prescriptions and had this huge bag and took it over with me. I didn’t have any problems. Like I’ve never been stopped at customs and explain what’s all of this stuff for.

Shaun: I suppose that depends on where you are going.

Dan: It depends on where you’re going. The only place-

Shaun: Like you’re not putting anything into a boogie board or anything like Chappelle or?

Dan: No. I think the only place that they questioned me, go figure, was Australia on the way back in, cause I came back early and I still had quite a lot of medication and they questioned me pretty hard. Canada, I think I got asked a few questions. I didn’t have any trouble. I had doctor’s notes to go with everything, but I think that’s less and less relied upon now.

I think so many people travel and with medication, I think as long as they’re labeled with your script and take your prescriptions with you and if you’d feel more comfortable taking a doctor’s letter but make sure all of your medication, as much as possible is labeled, don’t go traveling with pill packs and that sort of stuff, and no ability to be able to prove where they’ve come from.

Shaun: Obviously making sure that you’ve brought enough day-to-day medications for the time that you’ll be spending there is important. Have you got any other tips that you might recommend for people that may want to go overseas for a holiday or an extended period of time? Do they let their clinic know in Australia beforehand, do they check in with a hospital over there that’s sort of connected.

Dan: I think it probably comes down to your individual health. Firstly, my main piece of advice would be, don’t go if you’re unwell or if you think that you’re unwell and that can be a really hard decision to make. It may sound from us sitting at home or listening to something like this, you think, well, of course, I wouldn’t go if I’m unwell, but we, people with CF live life unwell a lot. Our limits are often quite stretched. We have to, so it can be easy to think, oh look, I’ll be right, I’ll be right. Don’t take that risk. You’ve got nothing to gain by taking that risk. I suppose that’d be my one main piece of advice.

It’s hard. I’ve had to cancel trips three or four times. I’ve had to come home early, I guess you really do need to listen to your body. If you’re going through a bad bout and the, a bad bout of health and you’ve been in hospital a few times this year and you’ve got a trip coming up in August and ready to go, don’t push on with it unless you’re absolutely confident that you’ll be okay.

Secondly, make sure that you have linked if possible linked in with the CF clinic. I was able to do that in Ireland. I never visited the clinic, but they’d had that had an email from my doctors in Melbourne and I had the contact details for them if I needed to reciprocal health agreement really helps too. I think in Ireland. Again, I didn’t have to use it in Ireland. There’s a reciprocal health agreement, I think.

That really helps, I think still get travel insurance, but that can be really hard for us. I never really had to use it. Thank God. I don’t know, but I have still made sure I’ve taken out a policy each time I’ve traveled.

Shaun: Obviously, arming yourself with your medications linking in with the hospital, even if he may not necessarily need it, and having open communication with your clinic back home is probably the three most important things, I suppose.

Dan: I think so. This depends on your own situation, but Nepal was completely different, obviously completely different to Ireland. There’s no CF services in Nepal, as far as I’m aware, that was probably a bigger risk for me. I was in Nepal for about five months, I guess I was quite well at the time and I’d planned on staying on in Nepal a little bit longer, but I started to become unwell and I was just looking for those early signs once I saw those early signs, I pretty quickly organized a trip home. That was probably a very good idea.

Shaun: I suppose, being flexible with your travel in the event that you may start to feel unwell is obviously something that you need to keep in the back of your mind for us, for CF adults with CF when they’re traveling.

Dan: Yes. Definitely. Just be aware. You may have to carry on this trip and it’ll suck, but it’s better than the alternative.

Shaun: Hospitals can be very flexible. Like I’ve, I was sort of reading up about other hospitals and what they may recommend for adults with CF that intend to travel. Sometimes what it can be sometimes a tune-up before you leave, just to get you up to a hundred percent before you even head off. There’s sometimes that factor.

Dan: Yes, I did that a lot of times.

Shaun: There you go. Okay. You had to tune-up before you left.

Dan: Yes. Both times that I spent a significant period overseas I had a tune-up before I left and I needed a tune-up by the times I’ve track it back. It’s not as easy as I think we’d like it to be, but you can get as many of your ducks to line up then it’s it is possible.

Shaun: Well, that’s what you’ve shown us by sharing your story with us is that it is possible. It’s just not as necessarily simple as an able-bodied person.

Dan: Exactly.

Shaun: It’s not impossible possible.

Dan: It’s not as easy as we would like it to be.

Shaun: Yes, absolutely. Excellent. Well, Dan Ryan, we’re actually at the end of our interview and I always finish off my interviews with what’s called a fast five. Basically, I’m going to ask you five random questions and you just need to answer the first thing that pops into your head. You don’t need to explain it. It’s just the first thing that pops into your head. Are you ready if you’ve asked five?

Dan: I’m ready for it.

Shaun: All right. Number one, who was your childhood celebrity crush?

Dan: Dr. Harry.

Shaun: I don’t have enough time in the day to dissect and I’m not a psychologist. Let’s just move on to number two.

Dan: Keep going.

Shaun: Why don’t we. Maybe that’s guaranteed to make you laugh.

Dan: Well, maybe that’s guaranteed my real laugh would probably be Ace Ventura.

Shaun: Classic. Well done. That’s a good answer. Number three, sweet or savory.

Dan: Savory.

Shaun: Good answer again. Number four first single/album you ever bought?

Dan: T-Shirt your sexy thing.

Shaun: One of the best covers in history, I believe. Your last one is someone to trade places with for a day and they can be living or dead.

Dan: Probably Lady Gaga.

Shaun: Just to know, like, what is your morning routine? Like what is it that goes on in your life when you wake up in the morning?

Dan: Yes, no I’ve just been on a road trip recently and listened to a fair bit of her in the car and she’s actually pretty cool.

Shaun: She’s awesome.

Dan: Yes, probably Lady Gaga.

Shaun: Fantastic answers. Well, Dan Ryan, thank you so much for taking time to chat to us today and to answer these really amazing questions. I think there’s lots of adults that are living with CF that can really benefit from hearing your story, whether they’re thinking about moving into state or overseas or whether they’re planning on moving to regional Australia even, so really appreciate your time.

Dan: Well, I hope that I’ve been able to answer a few questions for people. I guess my main piece of advice would be within reason and if you can just do it, it’ll be right. You know your own limits, particularly if you’re moving sort of anywhere within Australia, there are always going to be people who are able to help you somewhere just may not be as simple as it’s always been or the same way that it’s always been.

Shaun: Excellent. Well, Dan, thank you so much for taking the time today.

Dan: No worries. Thanks, Shaun.

Shaun: Thanks for listening to this episode of the CF Strong podcast. Make sure you subscribe on apple podcasts or your favorite podcast app, so you don’t miss the next episode. If you enjoyed this podcast, we’d really appreciate, if you could leave us a review on apple podcasts to help other people find it or share us with your friends. Also, we should take a moment to remind you the views expressed in CFStrong podcasts may not be reflective of cystic fibrosis community cares viewpoints.

The podcast is designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible by the National Disability Insurance Agency and was produced by CF Community Care and CF Western Australia.

Thanks for listening. We’ll talk to you next time.