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.
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’ experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong we have joined forces to bring 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 individual’s personal journeys of living with CF.
We hope you find some value from listening to the podcast we bring to you in this series. But please remember the content is not intended to replace your usual healthcare. Discuss any concerns or questions you may have with your healthcare team directly.
I’m super excited to introduce you today to Meg who has agreed to come in and have a chat with me about aspects of her physiotherapy care regime. Meg, thanks so much for joining me today.
Meg: Hi, Jen. It’s great to be catching up with you today. And thank you for inviting me to be part of this great podcast series. I’m really excited to be talking with you.
Jen: So, Meg, before we get started, I thought it might just be interesting for everyone to have to know a little bit about yourself. So, we’ll break the ice with three of your top interests or passions in life.
Meg: Sure thing. Well, I just turned 28, I’m self-employed as a hairdresser. And I really love spending time with my two dogs and my husband, Dan. I don’t really know if I have any hobbies. But I definitely enjoy socialising with my friends and going out for a meal. And I don’t mind reading a book.
Jen: Nice. What’s the latest book you’ve read?
Meg: I think it’s called the Hypnotist Love Story by Leanne Moriarty.
Jen: Cool, great author. Everyone out there can check her out. She’s good. So Meg, what sort of things do you include in your week to try and stay well?
Meg: 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.
Jen: Nice. You mentioned lots of things that you like to keep your mind and body well there. But given we’re, we’re chatting about all things physio, can we move on to what you do as physiotherapy for looking after your lungs.
Meg: So, 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.
Jen: Nice. Are there any parts of this regime that you find hard to keep up with?
Meg: 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 flatter instead of the Arabic 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. Is that okay?
Jen: Good question, Meg. And I suppose just to reiterate, obviously, as we said, this isn’t sort of a physio session for me treating you. So, I’ll just share with you some information that’s sort of helpful from an education perspective for everyone listening. And then really just to emphasise that people need to catch up with their care team or their physio to ask them about this. But it is, pulmozyme and the timing of pulmozyme often creates a lot of confusion, I think in the CF community. And there are quite a few different approaches that you can have with it.
So, one of the things that we see at CFPhysio.com really try and promote is that education and information will allow you to then make your informed decision and sort of empower you to see what combination works best. But bare with me if it’s okay, Meg, and I’ll run through probably could throw this question to you actually, in terms of do you know what pulmozyme is doing? So, do you know what it’s actually used for?
Meg: The only description I’ve probably had, or the one I remember is when I started so I would have been about 15 so a while ago, was that pulmozyme was like sending in a little army that chopped everything up for you. So that’s my, the extent of knowledge.
Jen: Yep, in terms of chopping up your sputum. So yeah, it’s it’s classified as one of our mucolytics when we’re thinking of all of our inhaled therapies, and the chopping or the really formal word is they use is it cleaves through certain components of your of your sputum. So, I use the analogy sometimes when I’m explaining it to patients, if they imagine all of these long, long strands of spaghetti all tangled up, and that’s your sputum. And imagine how hard that would be to try and shift. But the pulmozyme goes in and cleaves or cuts through like a big pair of scissors cutting through that tangled mess and breaking it up into smaller pieces that are much easier than with using things like airway clearance to actually shift the sputum.
But we know that pulmozyme needs at least a minimum of 30 minutes before it can actually do that to our sputum. And that’s why ideally, we would encourage people to use the pulmozyme before they use their airway clearance techniques or their other mucolytics, like hypertonic saline. But a lot of people will find that really hard because they do their pulmozyme and they have to wait for half an hour. and before they do the rest of their regime, but they got to get out the door, they got to go on and get to work or drop kids off at school or whatever else.
So, some patients will choose like yourself to do the pulmozyme at the end of their regime. And you can think the theory there is, you’re actually clearing all of that top sputum that’s collected overnight, because you do it first thing in the morning with your hypertonic and Arab beaker. Clear out, open up the airways, and then get more of the pulmozyme into other spaces in your lungs. And then, as you said, you wait for half an hour, and then you go and do exercise. And we know that exercise will also help your lungs.
Some other patients will actually opt to use the pulmozyme right at the end of the day. So, they use it last thing before they go to bed. And then the pulmozyme can be in their airways overnight and make it thinner to be able to shift to the next morning when they do their clearance. You know, like lots of different options there. And I think the key is to be working together with your physio, and choosing which regime works best, but also remembering it might change. As in you might do one routine, but then symptoms might change. And you might need to mix it up a bit.
So, I sort of hope I’ve answered that for you, Meg, alright. So can we just chat now in terms of if there’s been a time when you’ve found your airway clearance, where it sort of made you feel worse, and talk us through, you know, what that felt like and what you did, or how you navigated that time.
Meg: 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.
Meg: But I’ve also 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.
Jen: That’s a great outcome. And because I can imagine if you, if you’re doing your airway clearance that it makes you feel worse at the end, as you said, it’s not very encouraging. And it probably doesn’t really motivate you to keep doing it. So, there’s a risk then isn’t there? That you will stop.
Jen: No. So that’s great. So, Meg, 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 to make that decision, like what sort of changes?
Meg: 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 had another question as well actually, as I mentioned before, I use exercise a fair bit as part of my routine. And I was just wondering if I don’t exercise, and I you know if I’m not doing my exercise and I substitute that with an increase in my airway clearance a couple of times a week. Is that good, is that bad? 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.
Jen: Yeah. And that’s great, Meg, in terms of the modification, you know, where you’re recognising your usual routine has had to change whether that was because of COVID. Or if there’s other reasons why you can’t exercise, and then incorporating or adding more airway clearance so that you’re still having a care regime for your lungs. Exercise and airway clearance is a really hot topic, actually, in physio at the moment. And I think in the presence of CFTR modulators, we’re going to have a lot of patients asking whether they can actually replace their airway clearance with exercise. And at the moment, unfortunately, we cannot advise that because we don’t have enough robust evidence. But in time, we hope that comes.
So, I think it works both ways in the sense that if you have had a day where maybe for whatever reason, you haven’t been able to get to your airway clearance, but you increase your exercise on that day, and incorporate some huffs, or other airway clearance techniques in it that might be really valuable. Or as you said, if you can’t get to doing exercise is increasing your airway clearance. So, I think one of the keys is having what you talk about as a treatment box. And so, you have lots and lots of different tools in that box that you can use, depending on how you’re feeling. And I think it’s fantastic that you actually, you know, you’re talking about things where you’re, you’re being aware of your signs that things are changing. So, whether that is your sputum color, or texture, or volume, or your symptoms of cough, or you might even notice when you’re exercising, that you’re a bit more short of breath than you usually are when you’re doing the same exercise. And then that indicates you have to modify what you’re doing.
Even though you’re a creature of habit, and I think that creature of habit has probably put you in good stead for your adherence with your treatment, you’re still very open and flexible to having that ability to modify as you need. And I think that’s important. We know with CF, your airways are constantly changing, and no one individual is the same as another. So, one thing that works for one person might not work for someone else, or something that worked for you last year might not work this year, or something that worked yesterday might not work for you today. So being able to modify those treatments. And you said before that exercise is something that’s really important to you, and that you actually like exercising for both your physical health and mental health. And that’s very, very true for all of us, not just those with CF. And so, I think it’s an important part that you keep in your regime. And I suppose it’s just looking at different, like you mentioned COVID. And yes, it’s impacted so many. And exercise is one of those things, you know, you had gyms were closed, you weren’t able to be going to the gym, or some people even with CF, regardless of COVID, are concerned about going to gyms for infection control. So, it’s looking at other options as well, and having backup plans. So, if you can’t get to the gym, or if you can’t get outside to exercise because the weather’s bad is thinking about different alternatives, exercise bike, treadmill in the home, or looking at all the online platforms that are out there now that you can access. Have you got any other tips for exercise, whilst we’re on the topic of exercise and how you motivate yourself to do exercise?
Meg: I feel like again, 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.
Meg: Because even if I don’t feel like going for a walk, she definitely does.
Meg: I think it’s because it 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.
Jen: So, it doesn’t, I think if things don’t feel like chores. Like if you don’t feel like yeah, I don’t know, sort of chained to doing it. Even though yes, creature of habit, the fact that you feel good afterwards that’s a nice motivator, isn’t it? When you know, okay, I’ll feel good if I do it, just get out and do it.
Meg: Yeah 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.
Jen: Yeah. And that, it’s the variety that not only helps with the motivation, but we also know from a health benefits perspective, we need that variety from cardiovascular perspective and muscle strengthening, stretching and mobility. So, stops you from getting bored, but it’s also beneficial health wise, so that’s great.
Jen: Meg, do you have any advice for physios or other health care professionals out there when we’re talking to patients? I think this is something that comes up a lot. You’ve talked a bit about the fact that you modify your treatments and that you, you know, listen to your body. But what have you found helpful in the past when you’re working together with your healthcare team and working out your regime?
Meg: 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.
Jen: And I think you touched on a really interesting point there about, you know, that you being more open and honest with them, rather than telling them what they want to hear. I think you’re not alone in. I think there’s probably a lot of individuals with CF listening to this podcasts at the moment going, hmm, yes, I do do that. I don’t know. I mean, I’m coming from the health professional side here. But I imagine there’s an element when you’re talking to your healthcare team about that, if you’re feeling judged that you haven’t done your treatments, when you know that it’s treatments they’ve recommended to you. And so almost to avoid that judgment to say what you think they want to hear. But I think as you’ve said, when you can be open and honest, and hopefully the environment is created where it’s sort of safe and non-judgmental, is then you’re going to be able to do so much more troubleshooting and working together aren’t you, in terms of if we know exactly what symptoms are happening, or what you’ve been doing or not doing, then we can be better at informing you of changes you might be able to make, or vice versa, if that makes sense.
Meg: Yeah, definitely. I think where I found where I’m comfortable saying that I like I spoke 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. So, I feel like that communication and that, yeah like you said lack of judgment, I guess in that space is quite helpful for honesty. And I think honesty means that we probably get better outcomes.
Jen: Yeah, and it’s that open conversation, isn’t it so that then we can work together to see why it’s not working. Because if we think you’re doing it, but you’re not getting any different in symptoms, then we can’t work out what might work instead, or at least more effectively for you. And troubleshooting with the barriers you know if there’s barriers where you can’t change a habit or if you can’t get into a routine, then finding different strategies to overcome those barriers will then again, help you acquire the skills.
Meg, thank you when we’re talking about openness and honesty, for your honesty with sharing that because I think communication is one of the keys for rapport building and having that partnership in healthcare, which certainly me personally, I feel very passionate about it. But I know there’s a lot of physios that also agree. We spend a lot of time with you guys doing physio, which we know you all love doing physio, and it’s your favorite part and the most adhered part of your treatment. And I hope everyone listening can pick up my sarcasm there. So, I think it’s really important that we have those open conversations so that we can improve your health outcomes. Meg, do you have any other pearls of wisdom or gems that you’d like to leave those that are listening to us with for the day?
Meg: I don’t think so.
Jen: Put you on the spot there.
Meg: No, but I’m glad, I’m really glad we touched on important of that open and honest communication. 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 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 think that’s really great that we’ve touched on that.
Jen: That’s great. Meg, thank you very much for joining me today. I really appreciate it and I’m hoping those that are listening will be able to take away a few things for them to think about and something new but maybe even just sharing the fact that they have similar thoughts to you. So, thanks again for being here today. And it’s been great to chat.
Meg: Thanks so much for having me.
Jen: No worries bye
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