CFPhysio.com and CF Strong 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 health care workers, and individuals impacted by CF. CFStrong is a website designed to inform, educate, and empower adults impacted by CF, through the sharing of individuals personal journeys of living with CF.
These podcasts have been supported by CF Tasmania through a Vertex Pharmaceuticals Circle of Care grant.
We hope you find some value from listening to the podcasts we bring 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.
Chasing the big waves
Live Fearlessly Foundation: Chasing the big waves
Meet Jacob Venditti, a young man with Cystic Fibrosis who was used to chasing the big waves from North Shore to Mexico to Indonesia until his health declined so severely, he was faced with the fear of never being able to surf again. Jacob is not only surfing again but has now set up his own not-for-profit foundation to help break through the barriers to help support others with CF to pursue their dreams. livefearlesslyfoundation.com/ check out the website and learn more about Jacob’s mission, and the activity grant for those in the CF community.
Sinuses and CF
CF Strong: All things Sinus!
Jump in to this conversation with Ear Nose & Throat Specialist Catherine Banks, CFPhysio.com President and Physiotherapist Jen Hauser, and CF Strong co-host Sam LeFoe as they explore what our sinuses are, how they are impacted by cystic fibrosis and what can be done if they are causing problems for you. This great session has been brought to you by the team at CF Strong and CFCC.
Fatherhood with CF
Fatherhood with CF – Episode 1
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.
Fatherhood with CF- Episode 2
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.
Exploring the huff
A Life With Ruby
It Takes a Village
Meg: “Partnerships in healthcare” (20 minutes)
Meg on the importance of open and honest communication with your healthcare team
Meg is a 28-year-old self-employed hairdresser. She lives with her husband Dan and her two dogs and loves socialising with friends, going out for a meal and reading. She discusses what she does to stay well, how she navigates changing her treatment regimen and why it is so important to establish positive relationships with your healthcare team.
What sort of things do you include in your week to try and stay well?
“Well, I really like to exercise. I feel like that’s good for my lungs and for my mental health. I like to go to the gym a couple of times a week. I also walk the dogs most days and enjoy going to the pool for a bit of a swim too.
I like to do my airway clearance at least once a day when I’m well. I generally do this of a morning as soon as I wake up. I find that’s the most productive time of day for me, and I generally feel better doing my treatments first thing. My airway clearance involves a session of hypersal combined with my Aerobika, then followed by my Pulmozyme. If I’m unwell I try to do another session of a night as well.”
Have you got any other tips for exercise, whilst we’re on the topic of exercise and how you motivate yourself to do exercise?
“I feel like it’s the creature of habit thing for me, because it’s just something I’ve always done. But definitely having a dog is helpful. Because even if I don’t feel like going for a walk, she definitely does.
I think it’s because exercise makes me feel better, like makes me feel good mentally. I think that’s a pretty driving factor for me. I feel better after doing it. So that’s why I do it.
And having different exercises you can do. So, it’s not always doing the same thing. It’s nice, changing what I’m doing. So, if I go for a walk a couple of days, and then might go for a swim. Because I don’t swim as often that feels like a bit of novelty. So that kind of makes it feel a little bit less like a chore as well.”
Are there any parts of your regimen that you find hard to keep up with?
“Generally speaking, no. I do struggle if we’re on holiday or if we go away. And I did find it kind of annoying fitting it in on my wedding day. But I generally struggle more with the introduction of new equipment or techniques. If it’s something I’ve done for a long time, then I feel like my adherence is generally pretty good. But I like, like I used to use the flutter instead of the Aerobika and it took me a while to feel converted with that. I struggle to add in things like my breath hold or AD. I sort of fall into a pattern that I’m used to and then revert back to that.
I also struggle slightly with my concentration. I feel like I can get distracted easily. I recently moved all my treatments to the dining room table. I feel like this has sort of improved my focus. My pulmozyme I do that after the Aerobika, but then I tend to go for a walk about 30 minutes after that.
Talking about the pulmozyme before, I know that I used to do that of a night. I felt like it made me a bit irritated of a night time. So that’s why I moved it to earlier in the day.”
Has there been a time when you’ve found your airway clearance has made you feel worse? What did that feel like and what did you do or how did you navigate that time?
“I’ve found, like a little while ago, my treatments were making me feel quite queasy, as in my hypersal and at this point, I think my flutter, so I still did them. But I definitely felt worse after which wasn’t very encouraging. Eventually, my doctor prescribed a combination of inhalers for me, which has helped heaps now. I either feel the same after I’ve done my treatments, or I feel a bit better from shifting everything a bit, which is good.”
Do you modify your treatments every day or do you do the same routine? And if you do modify it, what sort of things do you look for, or listen to make that decision?
“I’m a massive creature of habit. So, I tend to do the same thing every day. If I’m feeling the same, like if I don’t feel like anything with my baseline has changed, I generally keep them the same. But I keep an eye out for signs that I’m unwell which for me tend to be increased sputum, changing consistency or color of my sputum, more coughing, or if I feel like I’ve got a cold or I’m getting a cold, then I’ll adapt my treatments a bit.
The first thing I probably do is increase the frequency of my airway clearance to twice daily. So, I do my morning session, and then I’ll fit another session in of a night. But I’ve also had a couple of episodes where I’ve coughed up blood and had to modify what I’m doing until that settles down. I probably struggle with that a bit more because that’s scaling things back rather than increasing a change. And I kind of feel like maybe I’m not doing enough you know when that happens.
I know I struggled a lot during COVID, because I was in quarantine and obviously wasn’t allowed to leave the house. So, walking or going to the gym was difficult. So, I’d just do a few extra sessions of my hypersal with my Areobika, like during the week to sort of substitute for that, I guess.”
Do you have any advice for physios or other health care professionals out there when they’re talking to patients? What have you found helpful in the past when you’re working together with your healthcare team and working out your regimen?
“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’ve found that professionals who treat me like a person first and a patient second probably tend to build a better 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 and in my experience that probably helped me create better health outcomes for myself.
I think where I found where I’m comfortable saying that I like I mentioned about earlier, like the breath holds and the AD are things that I’m not very good at remembering to implement, after I’ve learnt them. Being able to, you know, I guess admit that or say that I haven’t been doing that, opens me up to learning more about it or understanding why I’m not very good at implementing it or trying to implement again, rather than just sort of being like, oh, yeah, I’ve been doing that. Because I know, that’s probably what I should have been doing or what they would like to hear.
But if I said that, or if I felt like I couldn’t say that I had struggled with it or hadn’t done it, or I’d completely forgotten, then that wouldn’t open up a conversation for me to I guess, relearn how to do it or touch on ways that it would be potentially easier to include it or things we could do that would make it easier for me to remember to do it and stuff like that.
Meg why do you think there should be such an importance on open and honest communication with your healthcare team?
“Because I think that’s something that’s really been invaluable for me with my health care and my adherence and taking on those new things rather than just being a creature of habit and sticking to the stuff I’ve done since I was 10. Because obviously, there’s advancements and I wouldn’t be making the most of those if I just kept doing what I’d done in the early 2000s. .
So, I feel like communication that, yeah, that lack of judgment (from your healthcare team), I guess in that space is quite helpful for honesty. I think honesty means that we probably get better outcomes.
Luke: “Start small, dream big” (30 minutes)
Starting with small goals: Luke on managing his CF treatment
Luke, who lives with CF, says his physiotherapy regime hasn’t always been consistent. However, by finding the strategies that suit him and a form of exercise that he enjoys, he has found a system that works.
“I have a bit of a rotation sort of thing I guess you could say. So, one day, I will go out on my bicycle and go for a ride. And then the next day, I’ll do hypertonic and Aerobika, or one of the various blowy things that exist. And then the next day it’s back on the bike, so it’s just sort of that alternate day type thing”.
It’s a simple strategy, but it’s one that works for this young man with CF. Luke hasn’t had a hospital admission for CF in 10 years and is relatively asymptomatic. It means that he often can’t or doesn’t draw motivation from an effective physio session, as he isn’t able to see any immediate benefits, although he knows there are long term health bonuses. Instead, he motivates himself by setting small goals and rewarding himself when he reaches them.
“In the last year or so, I’ve gotten into cycling… So that’s not really too much of a chore, at least to do that. And along the way, I’ve set myself some key points to get to.”
“So, when I first started riding, I thought well I’ll ride this, you know, X amount of kilometers, and then I’ll get myself like a new set of tyres or whatever. And… more kilometers up, I’ll get myself a new pair of shoes or a better pair than what I already had sort of thing. So, I’ve set myself some markers along the way.”
Since taking up cycling, Luke is now averaging 70-100 kilometres every week. He says the strategy of setting small goals and challenges has been vital to maintain motivation.
“For the early stages, that was sort of a way to sort of keep going a little bit.
And then I’ve also got like a bigger goal, as to once I reach X amount of kilometers on my current bike, I’m going to look at getting a new one. So, I suppose, in regards to that part of it, setting little sort of challenges and goals and things to sort of keep yourself on track [keeps me motivated].”
Besides setting small goals and challenges to keep him on track and motivated, Luke is a fan of using spreadsheets to see how he is progressing. The spreadsheets are also useful to share with his physio.
“The spreadsheet has got—it’ll have the week on it and then it’s got something like, the amount of kilometers I’ve done in the week.
“And then I’ve also got a little box that tells me what my average for the year has been… and then what I will, if I keep doing that distance, then how many I will do for the whole year.”
While today Luke may be racking up the kilometres every week, he started modestly, riding his bike around his suburb.
“One of the first times I went for a ride I went maybe two-and-a-half or three kilometers, like not far at all. And when I got off, it was like I couldn’t stand up sort of situation. And I thought surely riding a bike, it’s not that strenuous.”
“But that progressed… so I used to ride a particular loop. And then I’d do that every alternate day, and then once that sort of say 5k loop or whatever got to seem easy or I could look at, because I record of course my journeys, so I could look and go, well, I’ve done that quicker.”
“The times it’s taking me to do that, it’s getting less. And also, when I’m finishing, I’m not feeling quite as worn out.”
“That then progressed, the length got a little bit longer. And then it was the same thing, I did that for a while, and then once that got, you know, I felt pretty much the same as what I did when I started or I was doing it quicker then that expanded again. So, I’ve sort of got to a point now where if I go for a ride, I want to do at least 30-ish kilometers. So starting off doing, you know, five or six, and then that got to a loop of about 10.”
“I mean, even when you’re running or if you’re walking or whatever, in regards to extending your route, I mean, if you, just say if you go around your block, and if that becomes easy, then you just go the next one over as well. And you can just extend your route like that.”
“That’s sort of all I did, you know, as I started like in my suburb and went around two blocks, right and then three blocks, and then that sort of then slowly extended into the next suburb over which now is like me going into the city and then back or on the other side of town and then back.”
While keeping motivated to get on the bike hasn’t been a challenge for Luke, finding the same motivation to do his treatment is harder. He uses some simple techniques to keep himself on track.
“I think it’s fair to say that, in the past I’ve been… 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 little calendar.
“And I’ve got that laminated. So, it’s just like, you know, Monday, Tuesday, Wednesday, and 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.”
“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 ‘Oh I haven’t done you know hypotonic on this day. Why not?’ And if there’s a particular reason why that hasn’t happened, I will write it on, in the little box.”
“So that has been handy as in like a visual reminder with things.”