Alex on pregnancy and parenthood
This episode of the CFStrong Podcast is thanks to our collaboration with CFPhysio. Take a journey with Alex, as she shares her experience with Dr Brenda Button of planning, preparing and embarking on pregnancy with CF. Alex is a talented photographer, partner, mother, and strong advocate for her healthcare. This podcast provides insight on so many aspects of living with CF, with the key message: rally your team, create your village, and live the life you maybe never dreamed of.
”...what I would say, if someone was thinking about falling pregnant, is just make sure you've got that really solid routine and feel in control, I guess as much as you can with CF, because it loves to do what it wants to do sometimes. But if you can do everything you can in your power to keep well, that's pretty much your best bet at having a good and safe pregnancy...—Alex
”I'm not a master of the juggle and I've sort of learned over the years that it is a bit more of a tilt rather than a juggle. So when work is busy, sometimes I will tilt towards a lot of my energy is going towards work. And then when work isn't as busy, I spend a lot of time just really boosting my health up and trying to make sure I can get as well as possible.—Alex
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 of experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CFStrong, we have joined forces to bring to the CF community real life insights and personal experiences on all things, physiotherapy.
CFPhysio.com is a not-for-profit organisation, striving to deliver evidence-based education in CF physiotherapy management to healthcare 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 personal journeys of living with CF. We hope you find some value from listening to the podcast we bring to 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.
Today I am really, really privileged to have Brenda Button an experienced CF physiotherapist with three decades working with children and adults with CF, who is currently at the Alfred Hospital with me today and also Alex, a photographer living in Melbourne and a mother of one and an individual with CF. Over to you, Brenda and Alex, really looking forward to hearing your journey, Alex.
Brenda: Thank you very much, Jen. Thank you for our introduction and for this opportunity for Alex and I to talk to you today about a really important topic that’s become more and more of interest as everybody with CF has become much more healthy in later decades. So, Alex over to would you like to give us a little potted of your life from when you were diagnosed through your early childhood up to where you are now just in terms of your health?
Alex: Yeah, sure. Thanks for having me, Brenda. So, my name’s Alex, I’m 32 years old. I was diagnosed at six weeks old on the heal prick test and I was a fairly well baby and child had a very good and healthy childhood. My mum worked very diligently to keep on top of lots of physiotherapy and exercise and lots of appointments down at the Royal Children’s Hospital as a child.
So, I was lucky to have a fairly normal childhood, but as I entered sort of my mid-teens, I started to really feel all the effects of CF and understand obviously that something was quite different about my body. So I sort of began having routine tune-ups from about the age of 17 and I was able to maintain my health fairly well throughout my later teenage years and into my twenties, but probably as life started to take over, I moved to Melbourne to study and obviously trying to find my place in the world health probably took a bit of a backseat during those years.
And I definitely saw quite a decline in my health in my early to mid-twenties, which really sort of started taking me down a very different path in terms of the outlook of my life and you know, what I might be able to achieve in my lifetime. There’s a sort of the second part of my story, I guess, coming out of my childhood or my twenties where I was able to access some life-saving medication, which has led me to have the life I am at now.
Brenda: That’s a really interesting story, Alex. And of course, what you’re going to tell us about now is in the very early days of our first gene modulators being known around the world, and you have some really nice information to tell us about how you got onto gene modulators before just readily available in Australia. Would you like to tell us about that?
Alex: Yeah, so I was in and out of hospital probably four or five times a year with having tune-ups, having exacerbated lung infections and things like that. And it was during one of my hospitalisations that actually some, it wasn’t my usual doctor, but sort of looked at my health history and said, oh actually, you’ve got one of these quite rare CF genes, the G551D you know, there’s actually some medication that’s being explored and used in the US, maybe you should have a look at that.
And so, I told my mum about it, obviously not really thinking too much about it. And she started doing a lot of research and then she sort of realised, oh wow, like this is the first sort of groundbreaking drug of its kind. And a lot of the, I guess there was hard data out there from the pharmaceutical companies, but there was a lot of anecdotal sort of storytelling happening online.
This was 11 years ago. And you had young people taking this medication blogging about their experience, really saying like this, I’m feeling really, really different. And so mum sort of thought this is an opportunity because I was going downward spiral and my health wasn’t getting better. So, she said why don’t we just try this drug and at the time it wasn’t available in Australia.
So, we contacted the pharmaceutical company and just asked if we could purchase three months’ supply of Kalydeco. And so of course they’re a business, they said, yeah, sure. But it comes at a cost of $70,000 for their three months. And so, we asked my grandfather who was retired and kindly lent us the money so that I could try the drug for three months.
So, we shifted here and really within the first two weeks, I started to see quite dramatic changes. So, I’d suffered from really bad reflux for years where I couldn’t lay down to sleep because I would just be coughing. I was underweight. Obviously, my lung function was declining. I had trouble sort of running and things like that. And so all of a sudden I was able to have a full night sleep because I was laying down flat and I wasn’t coughing ridiculously. And when I coughed the mucus was coming up a lot easier. And therefore, then I was clearing my lungs. Then my lung function got better. And then the absorption of the nutrients of the food was getting better. So within that first three months, I actually put on… Well, it was probably over the next six months I put on 10 kilos, which then obviously made my ability to fight infection much greater.
So, I had all these work, things working together to improve my health. So that was 11 years ago now. And that really changed the trajectory of my life as well, because I think I was 22 at the time and I was sort of thinking, well I’m spending a lot of time in hospital I don’t know if I’m going to be able to have the career I want. And I certainly wasn’t thinking about having a family and I didn’t have a partner at the time or anything.
My health was just impacting all aspects of my life. So, since starting Kalydeco, obviously lots of things have changed. I was really fortunate enough to meet Mike, my partner. And then as our relationship went on, we sort of decided, oh actually I’m very well, I’m at an opportunity where I actually could have a child and coming into that decision, I always felt am I going to be well enough to look after a child for an entire lifetime?
Do you know what I mean? It wasn’t just about the pregnancy and after Kalydeco and I’d been on it probably I think seven years by the time we started thinking about having a child. I really felt like, no, well, I have the chance to get old. And so therefore think I can be a parent and see that through so to speak.
Benda: That’s an amazing story and really highlights the importance of us being able to get these drugs when they are available. And of course, we always tend to be a little bit behind in Australia for some reason as we are at the moment with the latest of the modulators. But would you like to, just before we start embarking on talking about the pregnancy part, tell us a little about your career. What did you decide and how did you kind of get there to the point where before we started thinking about pregnancy?
Alex: Yeah, definitely. So I have always been passionate about creative arts. And so when I was in high school, I was determined to become an artist of some form. And so I decided to study photography at RMIT. So I grew up in country Victoria, so I had to move to Melbourne to further my education. So when I was 18, I left home, lived on Uni campus and studied commercial photography at RMIT for three years, which was some of the best years of my life, really like just being surrounded by creative people.
And it was fantastic, but obviously it came with its hardships obviously to do with my health. And so then obviously very competitive industry. It’s very cutthroat and very saturated market. And so I finished in 2010, I graduated and I was very fortunate enough to do a lot of travel and get a lot of experience in the industry through that, but obviously found it very hard.
So, I had this sort of declining health, and then I’ve also had this industry that I couldn’t really just apply for a job for. I did struggle probably the first year and a half, and that was intertwined with, okay, well, how am I going to have a future in terms of financially supporting myself? Because I was going into an industry where really I was a freelancer needing to build a business, and that takes a long time. And so I was doing that, but on the side, I ended up studying a diploma of education. So I could be a teacher just to try and give me that streamline income because not only was my health bad, but then I sort of didn’t have the stability in my work.
So, I thought, well, I’ll do the dip Ed. And then I could always do relief teaching, CIT teaching, and have that stability in the financial side of things, which should allow me to look after my health. So, I did that and then it’s sort of all intertwined together because then I got Kalydeco. I finished the dip Ed and then all of a sudden, I was a lot healthier. And then I was able to produce more work. And then all of a sudden started to take off in my photography. So I actually only taught, I ended up teaching on a tertiary level for a year at a photography college in Melbourne, but then my photography just took off and I was lucky to be represented by an agent, which, so they looked after all the quoting and obtaining the jobs and things like that.
And so I really didn’t look back. So I always like sort of attribute getting Kalydeco was sort of at that point in my career too, where it started to take off. And I don’t think I would’ve been able to take that kind of opportunity in my career without Kalydeco either just because my health was taking so much of my time.
And it still does take a lot of my time, but I’ve been able to learn how to weave that in through my career. Cause it can be quite demanding in terms of I travel a lot. So, a lot, my—50% of my work is in Sydney and I live in Melbourne. I travel internationally as well, so I just have to manage that. But I mean, my work and my photography is a big part of my identity. So it’s definitely been really important in that process of my life in managing health and my career.
Brenda: A remarkable come together of all the aspects of your life that have sort of turned everything around. Would you like to tell us a little bit about how much time you actually spend on your health and how do you fit this into, when you’re doing flights to Sydney or unfortunately you haven’t been able to travel internationally for a while, so that’s been taken away, made life maybe a little easier, but how do you weave all of that together so that you still on your top game, when you’re at your shoots and various things that you do as well as having, finding the time?
Alex: Yeah, it’s a really good question. And I definitely don’t… I’m not a master of the juggle and I’ve sort of learned over the years that it is a bit more of a tilt rather than a juggle. So when work is busy, sometimes I will tilt towards a lot of my energy is going towards work. And then when work isn’t as busy, I spend a lot of time just really boosting my health up and trying to make sure I can get as well as possible. So I’m, when it does become busy again, I’ve got that energy and that reserve to do that. But in saying that CF is relentless, it doesn’t give you a day off. So, I religiously do Pari O-PEP physio every single morning. I cannot go on with my life without that, because I just feel clogged up still.
Even with the modulators, you know, you still have that mucus, so I need to remove that every morning. So I’ll do a good sort of 35 to 40 minutes of physio in the morning just to get me going. And then on shoot days I’m on set sometimes 12 to 14 hours. So those days I’m not able to do exercise and things, but I’ll always, still find a time to do my physio, even if it’s like just in the car or anywhere that I can fit it in. Even if it’s five minutes of airway clearance is better than nothing. So I’m always making sure I’ve got lots of extra fluids, so I always make up big water bottles and add salt into those. And maybe a little bit of cordial making sure I’ve got enough hydration or maybe it’s even just taking hydro light tablets to a shoot.
So I can put those in my water and get at those extra salts in and things like that. My agents have always been supportive and they always know—we get catering luckily on, on set and there’s always like a special shelf of like all my needs. It’s usually chips and any extra things that I need to get through those times. So I’m not alone. I have, always a support team in every aspect of my life that helped me make it a little bit easier.
But I would definitely say physio and exercise where I can is, if I let those things slip, that’s when I see my life start to tumble down because then my lung functions suffering. And then I have to start saying no to jobs because I need to spend the time to look after my health, which I find hard. I find it difficult to say no to jobs, to prioritise my health, even though I know rationally, that’s what I should do. I think my passion lies with my work, but sometimes my health speaks louder, I think.
Brenda: You mentioned your lung function. Would you be happy to share what your FEV1 is at the moment?
Alex: Yeah, so my lung functions about 65% at the moment. I would like it higher. When I started on Kalydeco 11 years ago, it was around 55% and I was lucky enough over the like past 11 years, I did get it up to 80%. Obviously in the past four and a half years, I’ve had a child. And I think there’s some, I am 11 years older than when I started as well. So, I don’t think without Kalydeco, I would’ve been able to maintain it the way I have, but I do look now to further gene modulators, just get that extra buffer. I think that I really could, I’d love to sit probably at about 70% for my adult life. I think that’s a good sort of point for me where I feel like I’ve got enough reserve if I got a lung infection that I could get back up.
I do feel the effects like, because I notice on long days on or if we’re moving about, I am probably lagging behind the rest of the group where I’m a bit more puffed out or going up a set of stairs, I’m definitely more puffed than the usual person, but day to day, people have no idea. I always say to my partner I think I’m busier than the average person and I walk around with one lung, but yeah, and I guess like, see if it’s such a gradual decline I’ve lived 32 years with impaired lung function. So I don’t really know any different, but in saying that I want to maintain every percent there is to get, I think.
Brenda: And in terms of your sputum volume on a regular basis, when you are at your best at baseline, how much would you be getting up a day on if you’re happy to share that with us?
Alex: Yeah, I’m always been a big mucus producer, but with Kalydeco, it’s much easier to get to, to bring up. So I would say I would still bring up maybe a quarter of a cup a day when at my best, and then when I’m unwell it can be up to a cup, I’m coughing up all the time. Also it depends on my fluid intake as well. I notice if I’ve had a lot of fluid and I’m keeping on top of that, obviously the mucus is a lot thinner, so it’s much easier to bring up. So I’ve always had a lot of mucus, but if I’m really on top of my fluids and my physio regime that at the start of the day, I’m usually pretty good to go.
Brenda: And what about mucolytics you mentioned Pari O-PEP. Do you combine a mucolytic with your Pari O-PEP?
Alex: Yeah, so I actually only do saline. I found that hypertonic makes me a little bit tight. So yeah, I’ll usually just do saline in the morning and just really put that pressure, I guess, on my lungs to really open up those airways. What else have I done? I mean, obviously swimming is very, very good for airway clearance as well, which obviously emulates a similar thing to Pari O-PEP where you are breathing with force pressure against your lungs. I mean, it’s been difficult during COVID to do the swimming and then I, I’ll do running and things like that, but yeah, saline is probably the main kind of thing that I would do for airway clearance to help it along.
Brenda: What about pulmozyme? Do you take pulmozyme?
Alex: I was taking pulmozyme religiously throughout my childhood and through my teenage years, but probably over the last four or five years. I haven’t been as diligent with doing pulmozyme and I think that’s become a bit of a routine thing. Obviously I’ve had limited time in the mornings. And I’ve just found, I was prioritising the time for airway clearance rather than sitting down doing airway clearance and pulmozyme and I had a toddler. So that sort of just slowly sort of wasn’t in my routine, but I definitely think there are huge benefits to pulmozyme, but it just, hasn’t been a part of my routine in the last couple of years.
Brenda: And Alex you’ve mentioned swimming. And just talk us through what a normal week of exercise sort of looks, like background of you and exercise, and then we’ll lead into the pregnancy part of all.
Alex: Sure. So as a child, my mum religiously made me swim and I attribute that to my very good health throughout my childhood. I hated it, but it’s funny it’s come full circle because I now realise how amazing it is because it is, such an amazing thing because it works your lungs so forcibly, but so gently, and then your body is not impacted because it’s such a low impact thing, which is, has been really important after pregnancy, obviously with pelvic floor and things like that. It’s definitely the best thing I could do for my overall health and my lungs and not have that impact on my body. But I do, do running. I’ve got a treadmill at home. It’s been funny. I’ve become, I probably prefer the treadmill during COVID times.
If I go for a run, I’m coughing a lot and I’ve become quite self-conscious I guess, of having these big coughing fits out in public. So I like to just be in my little… My treadmill’s in my laundry and I feel comfortable and safe there doing my running. So, I’ll usually try and do about 20 minutes probably is enough of cardio for me. And so I’ve had problems with Hemoptysis in the past and I’ve realized that’s probably been because I’ve pushed myself too hard. Maybe I was doing exercise at maybe 80% of my threshold and my heart rate was just going so high causing blood vessels to burst and things like that in my lungs, which would lead to this Hemoptysis, which obviously is not ideal because that can lead to further lung infection. So I think through experimenting over probably the last 10 years of Hemoptysis that if I work out at about 70% of my threshold.
So if my heart rate is about sort of 140, I usually find that’s enough to get my lungs going to get the mucus out, but not in, not too much pressure on my body to really exhaust it and have this, these Hemoptysis outbreaks that happen.
So that’s probably where I sit with the cardio and then I try and do some strengths things as well, but it’s mainly body weight in terms of just trying to improve my posture across my chest and my back and things like that. I try to avoid any exercise that’s too much like crunching and sit ups and things like that around my stomach area, because I do still suffer from reflux. And I find that anything, any exercise that puts pressure on my sort of abdomen area and everything’s squashing, everything’s getting pushed up my esophagus. So I try and avoid that as much as possible. So, but in the ideal world, swimming would be my preferred type of exercise, even though mentally I don’t enjoy it. I do, I do enjoy it after, but it is definitely, it’s hard to get in the pool at first.
Brenda: Thank you for all that background, Alex, so I guess now we would probably like to move into this whole aspect of preparing for pregnancy, but I guess before all of that, tell us a little about meeting Mike and kind of getting into your relationship and how did you manage your CF with all of dating and getting things to sort of progress to the point of becoming a couple.
Alex: Yeah, this is really interesting. So I met Mike pretty much at the same time I started on Kalydeco and when I met him, I said to him, I’m not normally like this. I’m not normally this well, like this is just a false sense of me. Like, I want you to know, like, if you are going to get into a relationship with me, I want you to know there could be some really bad times where I’m in hospital. You know, I might not be this well, this could happen. That could happen. You know, trying to prepare him for the reality of CF, because I felt he met me at a time where CF was looking very different for me.
I had experienced relationships before Kalydeco and before Mike and I guess it was intertwined with like our age, but I found it very difficult for other young men, I guess, to keep up with the demands of CF and the, this turbulent life of being in and out of hospital and having to say no to social things as a priority for your health. And that I found really hard in my early twenties.
And I sort of felt, felt like, oh, maybe I’ll never meet anyone because my health will be such a big part of me. And that’s not an attractive part of me, but when I met Mike and told him about my CF and that there’ll be times in that I’m in hospital and there definitely has been…It’s just part of his personality. He’s always been like, oh yeah, that’s fine. Like, that’s cool. Like, we’ll just go with the flow. He’s almost the opposite to me where he just lives in the moment and will go along not looking too far to the future where I’m always trying to troubleshoot things and predict what’s going to happen. So we are kind of really nice match in that kind of sense.
He really brings me back into the moment and just trying not to worry too far forward. And so I mean, he’s been a fantastic support. Like we’ve been through a roller coaster with my health for sure. You know, there’s been, as we’ve sat on the couch and I’ve been watching a TV and all of a sudden, oh my gosh, I’m coughing up a lot of blood. What are we going to do… And he’ll just calmly call an ambulance or just do what he needs to do, pack my bag. And he’s very non fuss and things like that. And times that I’ve been in hospital taking time off work to come and look after me and things like that. So I’m definitely like 100% responsible for my health. I wouldn’t call him a carer. You know, you ask Mike what medication I’m on, he wouldn’t be able to list them, but he’s always been there as that like moral support and always know that he’ll be there to pick up the pieces if things happen with my health.
So then having a child, you know we got Mike tested to see if he had, was the CF carrier before we decided to have a baby, because I knew I didn’t want to have a child that had CF, so was really important that we look at the options if, if Mike was a CF carrier and luckily he wasn’t. So after that, we sort of decided, well, okay, well our baby’s only going to be a carrier of CF. They’re not going to have CF.
And so really, I thought that my body wouldn’t work. I honestly was like, oh, this, is falling pregnant going to be quite difficult for us. You realise we may need to go down IVF. And things like that. People with CF can have reproductive problems and within sort of the first month that I was pregnant. So, I was like, oh, oh my gosh, my body does work. So that was a bit of a shock, but it definitely, I think it was perfect timing because I was so well and yeah, we were quite young, so I was 27 and none of our other friends were having babies really. They weren’t really even thinking about having babies, but for us, I just felt okay I’m well, we are young. Let’s do this now while I’m well, and know that I can do this we might only be able to do it once.
So it just was the right time for us. And I just, I wouldn’t change a thing really, in terms of timing and things like only now that our friends are just starting to have babies and stuff. And we wish that we could have done that at the same time, but they were just a bit behind us in terms of what their priorities were
Brenda: Taking a step back. How did you sort of prepare for pregnancy? Did you actually put some thought into it with your clinic? Did you, or did it all just kind of overtake you and happen on its own?
Alex: Yeah, well, I didn’t really have that much time. I mean, I knew I’d been working really hard to stay well, I knew my lung function was good. And so I guess I didn’t really share that much with the CF side of things about falling pregnant, because it was really just, okay, well, we might just try, we might try. And really I was, in my brain, I was like, this won’t work. So let’s just try for a little while, and then we’ll start opening that dialogue and having that conversation. So we didn’t really get that far. So I guess in my mind, I’d probably been preparing just to keep as well as possible. That was just doing physio every day, doing exercise every day, being really compliant with all my medications, going to my appointments. And for me that made me feel like a successful person.
I guess if I could be on top of my health and know that I was in control of that, that was everything that I could do. So that was probably my preparation and what I would say, if someone was thinking about falling pregnant is just make sure you’ve got that really solid routine and feel in control, I guess as much of, as you can with CF, because it loves to do what it wants to do sometimes, but if you can do everything you can in your power to keep well, that’s pretty much your best bet at having a good and safe pregnancy because you, you are as well as you can possibly be.
Brenda: You’re a pretty remarkable person though, in that you’ve always been so diligent about airway clearance and exercise and inhalational therapy, which not everybody has got to that point before they think about pregnancy. What would be your advice to somebody who wasn’t diligent about all those things and thinking about a pregnancy because in the clinics, we certainly believe that it’s important to talk about these things and get into a routine before one becomes pregnant and think about doing airway clearance of that situation for the sake of the growing baby, as well as your health. And then also that whole medication side people one month on month off of tobramycin, or if they go to need a tune up because they’re quite unwell, but when they become pregnant, what drugs are able to be used had you thought at all about that, or do you have any advice about that aspect?
Alex: Yeah, definitely. I would say that you need to do airway clearance, not, not only for yourself, but for somebody else, if you could do airway clearance for your child, your onboard child, if that’s a motivator for you do that. Because and that definitely has always been, especially since I’ve had Ruby a lot of my healthcare, I mean, prior to having Ruby, it was for myself, but now more than ever it’s for her I need to stay well for her, if I’m not well, I can’t be a parent. I’m not going to be here to be a parent. So that is a major motivator for me. And I think if you really do, you need to keep on top of your health 100% and do everything that’s in your physical power. And that is physio. That’s probably the number one thing that you can do for yourself that doesn’t cost anything.
You don’t need to rely on a pharmacist to get the medication. You don’t need to go to the gym. You can sit on your couch and basically put pressure on your lungs through a small hole and be able to cough up the mucus. And that’s the best thing really you can do for your health. And I think if you don’t have a good routine prior to having a baby, you’re going to really struggle. I think that’s a really big thing because we’ve spent our whole life looking after CF and looking after your life. And then all of a sudden you’ve got somebody else to look after, and it is a lot of work. It is not a small amount of work. And even I’ve got a lot of support and help, but it is a lot of work that, and it’s a very different way of looking after yourself.
So and there’s times when you’re not going to be able to potentially have a tune-up, when you think you maybe in the past you would, because you just can’t afford that time away from your family or whatever’s happening. So if you can avoid those times by doing a lot of physio, that’s going to make a big difference. And so medication, I did do some anecdotal research in terms of like, what were people overseas doing with the gene modular? Because obviously there wasn’t a lot of data around that at the time as well, because I was sort of in line with like, okay, there’s this big group of people, women that have all of a sudden, a lot healthier than they were, and therefore are now having babies.
And I was really lucky on Facebook, there was a page called CF pregnancy with Kalydeco, and there was probably about a hundred women on there that were all sharing their stories about being on Kalydeco and having babies and everyone really was saying like, we we’ve stayed on it. Our babies are healthy, they’re normal. And I sort of took the approach of, okay, well, I’m obviously speaking with my health physicians as well to get the information and make that assessment, but we’ve felt that it was like healthy mom, healthy baby. So if I went off Kalydeco, I think that my lung function definitely would’ve declined and I would’ve had trouble maintaining that. And so keeping my lung function up and my overall health was so, so important going into pregnancy in order to be well. So if that had been compromised, I think just due to say the lack of data around Kalydeco, then yeah, it would’ve been a different story in my pregnancy, I think, cause I would’ve struggled a lot more. I was fortunate enough that I wasn’t on any other sort of medications that would affect pregnancy, but I did actually take, I’m actually trying to think what IV antibotic I had at the time. I can’t remember it was a drug that we would normally give intravenously for a tune-up. And I’ve, I’ve lost the name of it.
Brenda: Was it possibly Ceftazidime?
Alex: Yes, it was, yes it was.
Alex: It was inhaled. So we actually did and inhaled throughout. Oh it was probably from 20 weeks because I just felt, but potentially, maybe I would’ve had a tune-up in normal days, but let’s just try and do it in inhaled. And I think that was three times it was quite an intense routine. But I really felt that kept the bugs at bay and that was a good alternative to say having intravenous, which I felt well could potentially affect the baby more than having it inhaled. So that was an alternative route that I went down to seek treatment during pregnancy.
Brenda: What about early pregnancy? Did you have any side effects from becoming pregnant of suffering any nausea or anything like that?
Alex: I was really, really lucky. I was very well throughout my whole pregnancy in terms of morning sickness. I felt pretty good really other than being exhausted during the first trimester to different kind of exhaustion. So I just allowed myself to rest as much as possible, but I didn’t suffer from any morning sickness. So I was very lucky from that aspect.
Brenda: And how did you weave your work through this period of time?
Alex: I continued to work up until 20 weeks. And so when I’m on a photo shoot, it’s quite physical I’m sort of squatting and then I’m up and then I’m down and I’m walking here and I’ve got a heavy camera at the front of me and there’s a of people for me to talk to and it’s quite an intense experience. And I felt after photo shoots, I was feeling really out of touch with my body. Like, oh my gosh, I haven’t even really been in tune with what was happening with my body. Have I even eaten the right foods? Have I drank enough fluid? Has the baby kicked today? I don’t know. Like I felt really out of sync when I was doing work, I was fine when I was on my computer, say at home or whatever, but when I was on set, I just didn’t enjoy that experience just from that aspect.
So I decided probably from a mental perspective and physical to stop work at 20 weeks. And just pretty much devote the rest of the time of my pregnancy seek to looking after my health. And it was some of the most… It was such a great time actually to actually devote that time. And I think allow myself mentally to just switch off from work and just focus on one thing. I don’t think it’s a sustainable model of care because I don’t want to be just a patient. I don’t want to be just living my life, looking after my health 24/7. But I felt for that short period of time, I had that timeline, obviously that I was working towards that. That was a really important thing for me. So after I finished work and just let myself look up after myself, I did swimming every day.
So I did laps for probably 20, 25 minutes a day, physio morning and night. Then I did the inhaled antibiotics three times a day. I rested, I ate, it was quite a, a beautiful time really of, and, and it showed me the power of what I could do. That was when I was in control of what I could do to the outcomes of my health. Obviously finding that balance when you have a child is a lot more difficult, but yeah, it was a really great time of really devoting time to look after my health.
Brenda: You mentioned swimming through the pregnancy. A lot of people ask me the question is swimming safe because the pools are you going to pick up bugs because it’s a warm, moist environment. What’s your take on all of that? What’s your advice on that one?
Alex: So it is difficult because a lot of the pools that, you can’t control the environment that you, that you’re swimming in. So I was fortunate enough. My grandparents had a pool that I could use that was very clean. So that’s what I use, but I have swam in other public pools in the past. And I’ve sort of just sort of tried to say, okay, well, what are the risk and benefits kind of like, I guess what we assess with any kind of medication and treatment. And I thought, well, the benefits are pretty massive terms of like airway clearance and how I feel and the low impact on my body. And I’ve been very lucky to not culture a huge amount of bugs and also try and keep that airway clearance up.
So I sort of thought, okay, well I’ll do the pool thing and I’ll swim and I’ll see the benefits. And I guess there’s a risk in anything, you are in the environment every day, there’s bugs if you pick up the soil or things like that, or stagnant water or anything like that. So I think, yeah, there’s risk there, but I think the benefits probably outweigh the risk in terms of getting bugs. So I continue to swim and I still find that probably one of the most important parts of my health or it exercise routine.
Brenda: That’s really interesting. And good advice for people. Cause a lot of people do worry about that. We also encourage them to check out how the pools are cleaned and are they do they have high students? Cause you can get some information there.
Brenda: Alex, let’s talk about sort of the middle pregnancy and when Ruby started to grow, talk about that aspect and impact on your lungs and your breathing and able to ability to exercise.
Alex: So I did a glucose tolerance test, I think I did it about 25 weeks, a bit earlier than normal and it showed gestational diabetes. So which I think was sort of associated with my CF related diabetes. I don’t have CF related diabetes, but I’ve always had sort of an impaired glucose tolerance test. And so I think that was what was showing up.
So from that perspective, I was worried about having a really big baby and I did, I was always showing quite big and she was measuring quite big throughout the later parts of my pregnancy. So people would often ask me, oh, are you having twins or whatever? I said, no, if it’s only one. So I actually was quite lucky. I didn’t feel too out of breath. I didn’t feel that pressure that some women feel on their diaphragm and of things being squashed and things like that, potentially it was because I was doing so much swimming and physio and looking after myself, but physically I didn’t feel that pressure, but I was doing Pari O-PEP morning and night.
I was doing the inhaled antibiotics three times a day. And then I think it was like once or even twice a week, I was coming into you Brenda, to do the MetaNeb, which was really the oscillating kind of pressure that was putting on my lungs was really helping bring up those sort of plugs that were at the bottom of my lungs or in areas of my lungs that I really wasn’t able to get out. And I found that made a massive, massive difference. And so I probably did that probably I reckon I did it about 10 weeks maybe with you, Brenda, just religiously having access to that, which, very grateful to have that extra type of physio that I couldn’t access at home. So yeah, it was a full-time routine of doing a lot of stuff for airway clinics was my main focus. And then I was obviously managing my diet very strictly to avoid having any high readings for my blood sugars. cause obviously having gestational diabetes can lead to a bigger baby and therefore, I didn’t want to experience difficulty in labor from having a bigger baby and things like that.
Brenda: Just to step back about that sort of mucus plugging that can come from the growing baby pushing up on your diaphragm, my recollections were that it was quite a mission for you to you come to the hospital to do the MetaNeb as an outpatient cause you were coming in from Berwick or at that time I think.
Alex: Yeah, it would take me at least an hour.
Brenda: But what I do remember is that every time you’d had the MetaNeb you’d get some plugs up during the treatment, but you’d always report the next time we saw you that you’d got more plugs up when you did airway air clearance that night, which you normally, wouldn’t the sort of hard dock plugs that might build up and cause problems. So that was an interesting learning thing for me as well, is that the MetaNeb, which inflates the lungs and can get some more air behind the secretions and open up those bases, which of course are being squished by the baby pushing up on the diaphragm that was a learning experience for me. You were the first one we tried that with as well.
Alex: It was like a hundred percent beneficial. I think it attributed to a lot of my good health throughout my pregnancy. So I’m grateful to have access to that.
Brenda: Moving on to the sort of end of your pregnancy or how are the nights, how is your re-flux? How did you manage sleeping? You know, what was that last trimester like?
Alex: Yeah. I think definitely experienced some insomnia, which I think they say is sort of preparing you for the newborn stage. So that was probably more mentally than anything obviously experience discomfort in terms of just having this really big baby in the front of me, actually, my reflux was pretty good. I had always had reflux, so I don’t think it was exacerbated any further than what I normally would have. And I would say I was waking up quite a few times during the night, which obviously would make you tired during the day. And I definitely experienced tired, but again, like I stopped working and so I had that time to rest and I think that was really important if I hadn’t been running around trying to work and move around. I think I’d be sitting here telling you a very different story. Like, so I gave myself the best chance to have rest and that’s something that I find difficult to allow myself to do even now. So I really allowed myself to recover and get through that stage. So I didn’t find it that bad, but again, I was giving myself the best shot I really could.
Brenda: What about anti reflux medication? Did you take any of that during the pregnancy?
Alex: Yeah, so I’ve always been on some kind of reflux medication, so I think I was on Nexium at the time. Yeah. And I think I continued, there was no drugs that I stopped taking during my pregnancy. Again, it was important for me to manage those symptoms because if I’m just coughing ridiculously all night and having to sit up and uncomfortable, it just makes the next day terrible. So I continued on those reflux meds.
Brenda: That’s all a remarkable story, Alex. I think Jen and I will have then heard a lot and learned a lot of interesting things from you in this, in this time. So let’s move on now to the actual planning for the birth. Talk about your obstetric team and who looked after you and just that sort of aspect versus say the CF team who is trying to manage your CF health.
Alex: So I was very lucky to have private health insurance. I know that’s expensive, but that was a big part of a priority of my pregnancy because I really felt I wanted that cohesive care and that one person to tell my story to and know that they were going to be there throughout my whole pregnancy. I was very worried if I went into the public system that I’d have one person and after like tell my whole CF story to, and then what, if I had this other person, then I had to tell that whole story.
So that was a big decision of why I went for private obstetric care because I wanted that just cohesive person throughout my whole pregnancy. And he was great. He just focused on the obstetrics and that was what he knew. And he said anything to do with your CF, I’ll let your CF care your CF team deal with that and I’ll deal with the baby side. And they definitely, they had each other’s number. And I think maybe called each other once, just in the very beginning, just to make sure we’re all across everything. This is what I’m going to do. This is what you are going to do, but there really wasn’t any further conversation from there on, they just looked after their main areas of expertise and that worked along really well. And we had actually added in endocrinologist obviously along the way as well, because I had the gestational diabetes.
So, she looked after that side of things. I had CF over here and obstetrics over here, and everyone just stayed to their area. And of course I think that worked the best. I think I wasn’t asking my obstetrician anything to do with my CF, obviously keeping in him in the loop in terms of what medications and things I was going to do. But that was the best model of care. I think just allowing those people to do the best job that they can do. And I was very lucky to have a very smooth pregnancy, so I didn’t need perhaps maybe if I needed to have a tune-up and there was going to be consequences in terms of the medication or the risk in terms of the baby that maybe they would’ve been more involved with each other, but I found that model of care. Very, very good.
Brenda: I was going to just ask about your pelvic floor and your changing body shape and exercising. Did you have a physio who was involved in your private team or how did you… Where did you get all your input?
Alex: Yeah, so again, coming back to swimming, swimming was very good for my pelvic floor because obviously you don’t have that physical pressure pulling, pushing down as if when you are running. So you really weightless when you’re swimming. And I actually love that feeling of just being able to exercise and not feel like that weight of the baby, because you’re in the water. And I think that was a big thing from a pelvic floor. There is no way that I could have gone for a run, like no way there would’ve… My body would’ve been falling out of my pelvic floor, cause I already did experience pelvic floor problem was before pregnancy. And definitely after has been very challenging. Obviously a baby coming through that area puts quite a lot of trauma on the pelvic floor. And also then coughing where as CF patients, we coughing all the time, which again, puts pressure on the pelvic floor. So I didn’t have any specialist needs in area during the pregnancy, but definitely 100% after I’ve definitely seen a private pelvic floor physio and things like that to try and strengthen it, but it continues to be quite challenging just with CF and coughing. So I was lucky in that area, but I definitely would’ve had access to those types of specialists in the private system if I needed them.
Brenda: And how much walking exercise did you do say in the later part of your pregnancy, you were swimming, did you do much walking?
Alex: Yeah, I would walk just maybe around the block and just so the general sort of moving your body just so I wasn’t just static laying down or sitting down most of the day, but I wasn’t going on big walks or things like that. Just getting that body moving day to day.
Brenda: And of course you would’ve stopped jogging where at the beginning probably.
Alex: Yes. Yeah. I didn’t really run for the whole pregnancy. I just went straight into the swimming cause I knew that was going to be the issues particularly from a pelvic floor. So yeah.
Brenda: All right. Now having got to this point let’s talk about the labor what’s happened in terms of getting that little baby out into the world.
Alex: Yeah, so I was induced at 37 weeks. I think I’ve been 37 and five or something and we sort of came to this decision, my obstetrician and I obviously having the gestational diabetes that was sort of getting more difficult to manage towards the end of my pregnancy. I was finding that I was eating all the right things and still I had these high blood sugars and that was kind of making me quite, I think I was feeling a little bit out of control of that section of my health. And so the obstetrician and the endocrinologist sort of talked together and just decided, okay, we’ve made it this far. You’ve had a really good pregnancy. Let’s just get this baby out and let’s get onto the next stage of after the birth. So we went in and had Ruby at Jesse ack private and I went in overnight and they did the balloon thing to try and open up the cervix.
And so that seemed to work really quickly. And then he said to me, oh, you actually could go into labor overnight. So of course I didn’t sleep all night cause I was thinking that’s going to happened to me, but I didn’t. And then early in the morning they set me up with all the drugs to get the labor happening and nothing was really happening for the first sort of three hours. And so they just continued to up the medication to try and make it happen. And then obviously being induced, it’s quite intense that all of the reactions happen really quickly and quite intensely. And so I had a fairly fast labor of only four hours, I think, vomited at the start of the labor. And then we really knew that things were really happening and it was really funny because I’d done a lot of research on the birth part.
Like I’d become like, okay, need to be an expert on labor and you know, watched a lot of labors and educated myself. And when I was in the moment, I was just so quiet. I couldn’t move. I was just this mute person that was just like, oh my God, what is happening to my body? I couldn’t move at all. And I always imagine myself as someone lay out or screaming or something like this and that wasn’t me at all. And I actually think it was because my body, I mean everybody’s body during labor is working so hard, but my body really was working really hard and I had no other energy to put energy into any kind of vocalizing or anything. It was just sort of in a way of sort of shutting down like, oh my gosh, this is really intense.
And probably toward, towards the end, I, I really started to feel like, oh, I can’t breathe properly. Like I felt like I was really breathing only the top of my lungs. It was just a tiny in and out in and in out. And I really felt this kind of suffocating kind of feeling like I really wanted to be able to take a deep breath or get enough air in. And that was frightening me a bit. I think I felt I’ve always been worried about not being able to breathe properly. And I think that was sort of oh my God, I can’t breathe properly. And so then we decided to do the epidural and it was quite late. My obstetrician said, oh, I wouldn’t normally give an epidural at this time. It’s quite late, but you are having trouble breathing, so I’m going to do it now.
And so I had that really fast. So I was really lucky, again, being in the private system, I think the obstetrician came in maybe 10 times during that time. Like he was so hands on. So available to me knew I needed that extra bit of care and knew I needed him there to make decisions for me. And so the epidural had, and then within, after 10 minutes really of having epidural Ruby was born. And so I had a force of delivery within episiotomy and you know, it’s been interesting, I had a really wonderful birth. I think I don’t regret any of those things, but then sometimes I wonder, oh, was there a lot of intervention at once? Could I maybe have done it a bit more on my own because we sort of went into it my obstetrician had that of plan.
He was like I’m going to help you as much as possible. Cause I think you’re really going to need it. And yes, I did need the help, but I wonder mentally, whether if I went into it with a bit more confidence of like, yeah, no, I think I could try and do as much as I can myself that maybe I could have avoided some of that intervention, but in hindsight, like I recovered very well and things like that. So maybe that was the thing that needed to do. I mean, there’s all, these would coulda shoulda kind of scenarios doing labor. And I was grateful obviously to have birth a very healthy child and I was healthy and everything went very smoothly. There’s nothing to report that didn’t really go to plan. So I was very lucky. And then so then she was born and I think I was in shock.
I was definitely in shock. I definitely obviously was elated to have a healthy baby, but I think that was really… It was quite an abrupt realization of like, whoa, like this is the end of me just looking after my spouse, myself, because I’d spent nine months really, really looking after myself so well to then all of a sudden it wasn’t just that looking. I was looking after that there was this other person, which I knew rashly that was always going to happen, but I think it definitely was a big shock for me when it did happen
Brenda: And just to step back. I mean, that’s an amazing story and yes, birth is such a fantastic moment with that new baby, but a lovely realisation that you’re looking after somebody else, which not everybody thinks about until that baby’s born, but to step back about your interventions, there’s it brings to mind a very unique article written by an obstetrician, or it was actually a respiratory physician with an obstetrician in Sweden, Marie Johansen. And she wrote about childbirth in CF, should preferably be ever vaginal birth. She said, use as much intervention is required, have an epidural get all the pain relief you need and a force of delivery of necessary, but so important for the mum to have a vaginal birth. And often they’re very keen to do caesarian in CF, particularly. And I know I’ve put this article on doctors computers to say, remind the obstetrician, please, to not do a cesarean, if they can possibly get away with the vaginal birth because your recovery afterwards is so much better. Yes, you had an episiotomy, which I think you haven’t talked about yet, but I think that should be a reassurance to you that that was probably the best outcome for you that you didn’t end up with then having an emergency seizure, which sometimes happens.
Alex: Yes. And I know my obstetrician was very across that because I was really worried with having a seizure of the impacts of coughing on like a large scar and how I would get through that. I was just thinking, oh my gosh, that would be impossible. And I know that, yeah, that my obstetrician was very keen for me to have a vaginal birth. So I’m very grateful that I was able to have that support to make that happen. I think so.
Brenda: You know, the risk of an operation or the cut across your belly to you as the mum and yours was so much greater than having a vaginal delivery maybe with an episiotomy, which recovers quickly. And not having all that impact on the chest.
Alex: Yeah, so true.
Brenda: Do you want to talk about any other aspects of the actual labor? You mentioned the episiotomy, was that something that caused you grief or
Alex: Yeah, no, I was able to recover pretty well, I think probably took six to eight weeks to recover from the episiotomy. I think, yeah, I was, I was pretty good. Obviously just saw and yeah, found it difficult for the first time being a patient, but not being like the sole person that really needed attention because I mean, I’ve been the patient a lot of times. But all of a sudden, a patient with something else to look after, and that was a big shock. Especially even during the recovery cause you’re used to being a patient and having that time to recover and just devoting that time. But all of a sudden there wasn’t any of that time really, I found that difficult probably with the episiotomy, but you know, it would be very rare to not have any kind tearing or anything during the vaginal birth. So that’s just the given of childbirth. I think it’s part of it.
Brenda: You’ve given us such a wealth of information, but I think if we could end this discussion maybe on talking about your supports, how important is having moral and physical support once you’ve had this newborn baby coming to your life.
Alex: Yes. Or that the saying of it takes a village to raise a child is 100% true. Even more with CF, you cannot do it on your own. You can’t… I know the nuclear family is such a thing of our generation, but it doesn’t really work when you have CF you can’t… I mean, there’s been times of just Mike and I obviously, and having Ruby and that’s been beautiful, but there is a team behind us. We were lucky at the time we were living with my ex-parents cause we were renovating our house. So, and she didn’t work and she was available to make me food and just do washing and do all those extra household things that I really couldn’t have done having a newborn looking after my house and run a house.
It just would’ve been impossible. I think for me, I also had my mom, so my mom lives three hours away from me, but came down for, I think, three weeks to help in the first stages. And Mike had a month off work, which was really, really helpful. And then yeah obviously having all that initial support is really important, but I think people think that as time goes on oh, I should be able to do it on my own or I should be able to do this. And there’s definitely been time throughout my parenting where I felt like, oh no, I should be able to hold this load and do all these kind of things. But the more experience that I realized like actually, no, I need a lot of help. I need help pretty much every day.
You know, I’ve been really lucky to have schedule people that come pretty much to my house every day. Even now that Ruby’s a bit older so that I have dedicated time for physio. I have dedicated time for exercise. I have dedicated CF Alex time because if I don’t have that dedicated time every day, the whole falls down. And so having access to that support and it hasn’t always been family. I’ve been really lucky to have a young girl that lives down the road that helps me just four hours in the morning, twice a week. And that’s my exercise and physio time with her. And then I have family help on the other days. Cause I did want to avoid childcare as much as possible, obviously all of the colds and germs and things that come with childcare.
So yeah, until I would worked out like to say yes to that help when it’s offered, I did find it really difficult. So I think, yeah, getting support, whether you have to pay for the support or look far near for that support, it is so important as part of being a parent at all stayed because yeah, you really do need that devoted time for looking after yourself, otherwise it’s not sustainable to parent and expect yourself to do everything that maybe somebody your friend or your neighbor does because we are different. We have a lot more needs and we always sort of call my health as that’s our second child. So if I’m not attending to that second in child, which is my health, then I can’t attend to the first child. So it’s almost just as important as looking after the baby.
Brenda: That’s a lovely lesson and you’ve been so generous, Alex and sharing so much of your intimate life with us. We are so grateful. And I know that there’ll be lots of other people who will listen to you and be inspired to have a go at having a pregnancy. And maybe some of the amazing lessons that you’ve given us all about. What’s important will really make a difference to their outcomes as well.
Alex: Well, thank you, Brenda.
Brenda: Thank you so much. You’ve just quite an inspiration to everybody. I’m sure that you live with and certainly to us in the healthcare system. So thank you so, so much you put so much energy into this. What you’ve shared with us today. You’ll probably go down and be exhausted for a while.
Alex: Thanks so much, Brenda. No, I’ve really enjoyed talking with you about my pregnancy. So thank you for the opportunity.
Brenda: Thank you so much,
Jen: Brenda and Alex, thank you for joining us today for this part of the podcast series. And I have to re-emphasise Alex, your honesty and your absolute wealth of knowledge that you have shared with us from your journey and it’s your personal journey, but you have been so giving with all of that information. And I think you are a brave, inspirational individual to have been able to come to that conclusion that you need support. And, and I think that alone for people listening, whether it’s through a pregnancy or through just their journey with CF is so important to hear and let them know that they can reach out for that support. And that it’s absolutely not a failure. It’s a success when you can get that bravery to ask.
So, you are inspirational, Alex, your proactive approach to your care and wanting to be in control is refreshingly wonderful. And I really look forward to the second part of this podcast. So just to give everyone a little taster, there is more, and we really look forward to learning more about life with Ruby and how you continue to be able to thrive with CF, but also as being a mum and Brenda, thank you very much for your time. And it’s very obvious that your support to Alex has been invaluable as well through this journey.
Brenda: Been great to work with her all these years. I knew Alex as a younger person of the children’s and it’s been a great privilege for me to have crossed paths with Alex over so many years because she’s always an inspiration, no matter what stage of life she’s at.
Alex: Oh thanks Brenda.
Jen: And I think Brenda you and I both share in, and we learn more from our patients I think, than anywhere else. And we’re forever privileged and grateful for that insight that you guys give us because it makes us better physios, I believe.
We hope you’ve enjoyed listening to this podcast. This podcast series has been made possible through the support of Cystic Fibrosis Tasmania and a Circle of Care grant with Vertex Pharmaceuticals. Thank you to CFStrong for their support and collaboration on the series. You can find this podcast and more on CFPhysio.com.
CFPhysio strives to deliver evidence-based education in CF physiotherapist management that is accessible to all. Their mission is to educate and empower healthcare workers (involved in the care of individuals with CF) and all those impacted by CF in physiotherapy. Visit CFPhysio to learn more.