CFStrong: Inform. Educate. Empower.

In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss vaping and CF.

Transcript

Voice Over : 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.

Sarah: Hello everybody and welcome to this quick fire one question, one answer podcast with clinical nurse consultant Kate Johnson. Today we're asking the questions that you want answered. So vaping just seems to be everywhere. What happens if I vape?

KJ: Yeah, so the studies are coming out more and more now because it's only a recent thing. And a lot of people say, oh, I quit smoking to take up vaping, because It's better for me, it's not as bad. But the studies are actually showing that there are a lot of different chemicals in there and little particles that can still get in and cause lung damage and lung disease, increasing those lung diseases, blocking the airways leads to increased risks of infection. We all know what happens there. And it's also those chemicals can also lead to that lung damage. We know that the theory is that vaping is healthier than smoking, but we know that anything like that, so vaping, smoking, and it doesn't matter if it's from a cigarette, a vape, a bong, a joint or even a hookah, you know that you smoke at a lot of those pool restaurants. It is all harmful to your lungs.

And especially those with CF. So why? It's because even people with healthy lungs, smoking and vaping and doing all of those can damage lung tissue and it actually reduces the lung function. So there's a big long explanation of how it affects the lungs, but the main thing is it actually damages the lungs. And we know that you throw in CF and smoking or vaping or whatever, and that increases the amount of damage to your lungs that even the CF disease causes. So it actually sort of multiplies the disease that can be caused. It's like a double whammy to your lungs and it can make you at a greater risk of lung infection as well and tissue damage. And we know we can't regenerate those tissues. So some studies have shown that it can actually affect and this is more smoking than vaping, but we know that can actually affect how the CFTR protein works in our body.

And that can, and it's a CFTR protein that could cause a CF disease. So we know it actually can reduce the amount that it works by as well. So there's another really big factor as well that smoking and vaping that's recently been added in can actually disqualify you from a lungs transplant as well. So it's known that you are, it actually does help disqualify you from lung transplant and puts you at a greater risk of infection, as we said. But it's something that you don't need to sit back and not tell us the truth because I'll be honest, like working in peds and adults over the years, a lot of patients, you'll talk to them and you know they've smoked or they have been vaping or whatever, and they'll come in and you'll ask them, have you been smoking? Have you been vaping? Have you been having joints? And they'll say no.

And we'll do a lung function, you see a great decrease in their lung function or just even a little bit of a decrease in lung function. And we then go through, we'll most probably do increased blood screening all the rest of it to find out the reason of that drop in your lung function. But if you're upfront and honest with us and say, "Look, I have actually been smoking or I have been vaping, or I have a few joints." That can actually answer a lot of the questions, why we see that reduction in lung function. And we can talk to you about that openly and honestly and talk abo...

In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss thrush and CF.

Kate explains that females with CF, in particular, are prone to yeast infections, manifesting as thrush in the mouth or throat and fungal vaginitis in the vaginal area. Kate discusses the causes, including disruptions in pH balance due to antibiotics and corticosteroids used to treat lung infections. She recommends over-the-counter antifungal treatments and discusses potential prescription medications for severe cases.  Kate encourages open communication with the healthcare team, emphasising the importance of seeking help without embarrassment.

Transcript

Voice Over: 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.

Sarah: Hello everybody and welcome to this quick fire one question, one answer podcast with clinical nurse consultant Kate Johnson. Today we're asking the questions that you want answered, an embarrassing and uncomfortable one for many. Why do I always get thrush?

KJ: Yeah, so females with cystic fibrosis are prone to yeast infection, so a fungal infection of the mouth and throat we call thrush, while yeast infection of the vaginal area is usually called a fungal vaginitis, but still, most people refer to this as thrush, as that's what most people know it as. Guys can also get thrush of the mouth. It's not just something that's only female only, but we do know that girls have a high tendency to get those infections. Fungal infections occur when the little microorganism called candida grow out of control in the body. And this is usually results in some sort of itching, irritation, bit of discomfort, the white patches. So it's more obviously you can see on your mouth or white patches and you can get a bit of white creamy discharge as well from your vagina.

It can also cause a bit of pain during sex and also when you have a whee. In girls and women with CF, this is usually the infections are usually often caused by the antibiotics that we've put on to treat your infections in your lungs. So we know it disrupts the balance of the pH in those areas. And also corticosteroids. So steroids when you put on them for lung infections, etc, can really affect and have that effect because you're taking them daily. We usually recommend treating the yeast infections or thrush with over the counter sort of antifungal creams and oral medications like your lozenges, etc., or NILSTAT for the younger kids. But some of the severe infection may require some medication prescribed by your doctor. Though it hasn't really been scientifically proven, many people believe that eating yogurt with alive bacterial cultures can help restore the body's balance of those beneficial organisms that help to fight yeast.

And there's also prebiotics that you'll often find your dieticians and your physicians will talk to you about to help balance out the body's natural ph. Because yeast infections are so common, it's really important to talk to your team. Don't be embarrassed about it. It's so hard not to be because I know walking up to your pharmacist, sorry, I've got this white discharge. It's a hard thing to sort of talk about. But when it's your trading team, it's as common to us talking about something like a yeast or a thrush infection or discharge as it is talking about your lung and your mucus and everything else. And no one seems to have too much issue talking to us about that. It's the same when you're talking about things like thrush as well.

Voice Over: Thanks for listening to this episode of the CF Strong Podcast.

In this episode, CF Strong podcast co-host Sam Lefoe chats with Clinical Nurse Consultant Kate Johnson about how to balance fun and partying while living with Cystic Fibrosis.

Kate discusses the considerations for individuals with CF regarding alcohol consumption, highlighting the increased risk of liver damage due to the strain on the liver from processing alcohol. Additionally, she emphasises the importance of moderation, safety, and communication with the healthcare team. Regarding smoking, Kate advises avoidance due to its detrimental effects on lung health and encourages open discussions about the risks and support for those trying to quit.

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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In this episode, CF Strong podcast co-host Sam Lefoe chats with Clinical Nurse Consultant Kate Johnson about how to balance time with friends while living with Cystic Fibrosis.

Kate delves into the challenges of balancing cystic fibrosis (CF) responsibilities, such as medication adherence, with the desire to partake in typical teenage activities. She suggests normalizing CF as part of one's identity rather than letting it define them. She discusses strategies to integrate treatments into daily life, suggesting morning medication routines and incorporating physical activities like sports or walks as incidental physio. Kate encourages individuals to consider how they perceive others taking medication, normalizing the process and fostering self-acceptance.

Transcript

Voice Over: 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: Hi everyone. Today we have a quick fire, one answer, one question podcast with Kate, a CF nurse. Today we'll be asking the questions that are kind of difficult to discuss or might be a little bit embarrassing as well. So a tricky situation that I know myself went through growing up was trying to balance my CF responsibilities such as taking my medications and also hanging out with my mates and doing all the things teenagers want to do. Do you know the best way to balance this out and what risks are right to take?

KJ: I can't say that I know the best way to balance it out because it's so individual and it's where you're in your life and what you're up to. But my only answer I really give to people is to normalize your CF. CF is not who you are and it doesn't define you, but it is that big part of you. And wanting to fit in with your mates and being independent from your family, they're really natural parts of life. So something that any adolescent experience is not just people with CF but being adherent, so sticking to your treatment regimens as much as you can, enables you to do all that stuff with your mate. If you don't look after yourself, if you don't take your meds, such as your orkambis or your triamcinolone or your CREONs or whatever it may be, you know that there's those side effects.

So we're talking about the bloating, the stinky farts, the feeling unwell, feeling full, loss of appetite, decreased body mass index, all those sort of things that associate with poor health. So then you actually can't go out and do those things with your mates and keep up with them. Can you fit in, make sure that you do most of your medications in the morning before you get up and about and go to school or to go out to catch up with your mates, etc. Can you do your physio before catching up with them or that incidental physio, when you're catching up with a mate instead of just sitting there playing games or going out to eat. Could you do it as a physical catch up? Can you go play some sport?

Can you go for a walk? So you're doing incidental physio that you don't actually have to time everything else into the day. So you've done 20 minutes of higher level physio. Can that decrease the amount of physio you need to do at home as well? I always say what's worse taking a couple of capsules, actually something that's been spoken about a lot lately is a lot of people, because they're well and feeling well, they hate taking their medication in front of their friends because it reminds them they have CF. And they don't want to take their CREON. But I always come back to the fact of taking a couple of capsules. It may be three or four that you have to take with your meals.

In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss sex and protection for people living with CF.

Kate emphasises the importance of safe sex practices for everyone, as individuals with CF face the same risks of contracting sexually transmitted diseases. She provides insights into the potential impact on health, fertility, and the transmission of diseases, highlighting the need for protection in various types of sexual activities. Kate discusses contraceptive options, including condoms, intrauterine devices, and hormonal implants, and encourages open communication with healthcare teams for personalised advice.

Transcript

Voice Over: 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: Hi everyone. Today we have a quick fire, one answer, one question podcast with Kate, a CF nurse. Today we'll be asking the questions that are kind of difficult to discuss or might be a little bit embarrassing as well. So we've talked before about fertility and having children with CF but I want to now talk about if I need to use protection when I have sex.

KJ: Yeah. So being a good child of, growing up in the naughties when all the sayings were around, I grew up with a saying, if it's not on, it's not on. And no glove, no love. So they're those great sayings that were out there. But so using protection during sex, whether it be boy, girl, girl, girl, boy, girl, whether it's oral, vaginal, anal, or any other combinations of things that I don't know about you do need to use protection. So people with CF are at exactly the same risk as everyone else of contracting sexually transmitted disease. And some of this stuff is not only embarrassing, such as discharge, etc., but it can also affect your health, your fertility, especially in females, and it can be lifelong. So even though a lot of guys think, well, I can't get a chick knocked up, in a very simple way of saying it, but I can't get someone pregnant because I have the incomplete vas deferens and I don't shoot out sperm.

It doesn't mean that, there's still that two to 3% chance that you can actually get a girl pregnant naturally. But it's also, you're still at risk of getting sexually transmitted diseases such as herpes, chlamydia, gonorrhea, etc. So that's why it's really important that you do look into using protection, whether it be condoms, which is the number on recommendation, but for females, there are other options out there as well. So it's worthwhile talking to your team, especially with some of the gene modulators like orkambi, we used to talk about it affected the oral contraceptive pill. So we used to talk about other methods of contraception as well. So, like I said, your condoms, your intrauterine devices that are inserted into the vagina that reduce the risk of getting pregnant. And also the implant on which helps regulate the hormones. But as I always say to everyone, just remember, safe sex equals no regrets.

Voice Over: Thanks for listening to this episode of the CF Strong Podcast. Make sure you subscribe on your favourite podcast listening platform so you don't miss the next episode. And if you enjoyed this podcast, we'd really appreciate if you could leave us a review. It helps other people find CF Strong, or share us with your friends. Also, a quick reminder that the views expressed in the CF Strong podcast may not be reflective of Cystic Fibrosis Community Care's viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia.

In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss whether the kids of those living with CF, will get CF too.

Kate explains the recessive nature of the CF gene, clarifying that for a child to have CF, both parents must carry or have CF mutations. She discusses the different scenarios, explaining that if both partners have CF, there's a 100% chance of the child having CF. If one partner is a carrier, the chance is 50%, and if both are carriers, there's a 25% chance. Kate encourages individuals to undergo genetic screening when considering starting a family, providing valuable insights into the potential outcomes.

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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In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss having kids while living with Cystic Fibrosis.

Kate highlights the advancements in medical technology, gene modulator therapy, and improved overall health, leading to increased fertility among CF patients. She discusses the challenges and options for both males and females and the positive impact of gene modulator therapy on female fertility. The episode aims to educate and dispel misconceptions about parenthood for individuals with CF.

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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In this episode, CF Strong podcast co-host Sarah and Clinical Nurse Consultant Kate Johnson discuss late development and periods while living with Cystic Fibrosis.

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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In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss what happens when someone with CF kisses someone who has a cold.

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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In this episode, CF Strong podcast co-host Sam Lefoe and Clinical Nurse Consultant Kate Johnson discuss the reasons why people living with CF can experience frequent farting.

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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