In this podcast, Kristy shares her experience of going from consistently good health for most of her life, to being on and off the transplant list. Kristy talks about her love for working and keeping incredibly busy, from running restaurants to now working in disability support and the NDIS sector. Kristy also talks about becoming a mum, and the challenges and blessings of raising a child whilst managing a chronic illness. Kristy is full of gratitude, warmth and wonderful energy. We hope you enjoy her story.
Read a transcript of Kristy’s podcast below:
Keegan: Hi, and welcome to the CF strong podcast. CF strong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear real first-person stories, conversations with health professionals, friends and partners, just a heads up the guests in this episode may share their personal views about treatments and health management. But please remember this is not medical advice, and you should always follow the advice of your clinic team regarding your health. My name’s Keegan Bakker I’m a broadcaster and a cystic fibrosis community care ambassador. My guest in this episode is Kristy Hodges, who despite living at CF has achieved some very remarkable things in a diverse career, not least of which is being a mum which we’re going to talk about. Kristy welcome. There are so many different chapters to your story. So I think I might let you take us through your background.
Kristy: Thanks Keegan. I’m 41, nearly 42, and I have cystic fibrosis, but I’m also a single mother of a 12-year-old daughter whose name is Tula. She’s the best thing in my world. She’s amazing. I’m also really passionate about working in the helping profession. I previously studied a bachelor of social science at uni and I’ve worked in hospitality, administration had my own business, disability employment, NDIS support care indigenous youth programs. I’ve worked in a lot of different areas over the years.
Keegan: There is a lot unpack in there. There’s a lot of stuff you’ve done and you’ve lived quite an accomplished life. It sounds like a very varied one. Let’s start off with your time running a restaurant. Tell us about that.
Kristy: Okay. So that’s a bit of an interesting story. Actually, from 2015 to late 2017, I ran a restaurant with my then fiancé at the local golf club in Sawtelle it’s the hardest I’ve ever worked in my life and probably the most, I haven’t neglected my health in my life as to as well when I had the restaurant. So I think for probably the 3 years that we had, the restaurant I ran on adrenaline and poor decision making probably… It encompasses, not eating properly, not sleeping properly. My treatments took a backward step to doing 12, 13 hour days. And we had probably 14 staff. I think we’re always up late at night doing payroll and ordering as part of that rethinking of family hospitality, I think from what I’ve learned over these, and speaking to doctors, it’s a bit of a trend sometimes in people with CF to have that struggle too, where they sort of how far can I push my body?
Kristy: I want to live a normal life like everybody else. I know when I was younger, I went through my teenage years a little bit, but it was definitely with all its challenges. It was quite a toxic relationship. I was in as well at the time, there was so much learning to be had there moving forward after that when I shut the doors of the restaurant, so ended up taking it on by myself in the end, just to see the contract out. And my lung function had gone from 90% predicted normal to 38% predicted normal when I shut those doors. That was a massive learning curve. I went from having really good health most of my life to those poor decisions that I made in that three-year period and really cost me my life. So
Keegan: I find it interesting just to talk about people’s childhoods when particularly people with CF oh, I guess it’s something that I find particularly… I mean, CF is much more well known these days. I think people born 20 years ago or more, there’s a common theme where the parents had never heard of it before the diagnosis. And then suddenly they’ve got a child or people grow up in the family has to sort of learn what that means and how to deal with it. So starting there, and so you’re sort of younger years as a kid and a teenager. Was it something that affected you a great deal?
Kristy: So yes and no. I was always really healthy up until this point in time when I had the restaurant, I was really well, I went down to clinic for my checkups, I was a bit of a poster CF child. I had very few hospital admissions. I don’t think I had my first Ivy admission till I was about 18. So I wasn’t in hospital at all. My parents were fantastic. They were absolutely diligent with twice daily physio constantly. My mum did it. Dad did that sometimes, but it was kind of a mum thing. I was allowed Christmas morning off. That was it. That was the only day from not having that physio. I was probably, I think really over-protective as a child with CF, your parents tend to be a little bit over-protective and didn’t really stop me from doing anything when I was younger. And it was something that became your norm, the whole regime. You go through stages where you resent it. I think in teenagehood, it became more prevalent for me where I was different to the other kids in childhood. And I think too when I was about 16, we had a really good family friend with CF and I’d been a flower girl at her wedding when I was like 10 and she passed away. And I think that really made me sort of look at my own mortality a little bit.
Keegan: Which is a young age to start really. Confronting that concept and that having to think about that it’s, I mean, so much going on and changing in your brain when you’re 16 and to have that kind of heavy stuff would be difficult. So talking about your parents there, and it sounds like they did a fantastic job with the diligence with the physio and everything, but from that to you being a parent 12-year-old daughter, you said, you’ve got to tell us about her and tell us about that journey, becoming a mum,
Kristy: Becoming a mum was the best thing that ever happened to me. I often tell people Tula was probably my greatest achievement out of the lots of things that I’ve done. My pregnancy… So I felt completely naturally with Tula I’d been in a relationship with her father for about five years before I had her. And I being you know, when, when we say a thought that I either would never be able to have children, or it would be a difficult role where IVF would be involved. And I was 29 when I felt… No 28, sorry when I fell pregnant with Tula and I had given birth to her when I was 29. And I honestly didn’t think it was on the card. So it was over the moon. When I found out I was pregnant had a great pregnancy.
Kristy: The safe clinic had told me that I’d have to have IVF admissions throughout my pregnancy that I’d have to possibly give birth, having an induction or C-section in Sydney. I went 10 days over. I surfed till I was six months pregnant. Couldn’t lay on the board anymore. I did last prenatal yoga. I remember my yoga teacher saying to me that having a baby is like running a marathon. It’s saying you’ve got to train for. And I was like training hard… I’m going to do this. It’s going to put absolutely everything into making this baby, building this baby and birthing this baby. And I had an amazing natural birth in the hospital here at [Caffs 07:24] and the minute you hold your baby in your arms, it was like, I don’t know, everything else faded into the background. And it was just a beautiful dream run. I talked to other women, friends of mine who are non-CFUs and they have all these trauma stories. And I just think how blessed I was to have such an amazing run with pregnancy and childbirth
Keegan: Definitely does sound like a blessing and incredibly lucky and sounds like you were obviously very grateful for that and aware of that, which is fantastic, but also I’m interested in the prenatal, yoga and surfing and stuff like that. It sounded like you had a failure. You, we sort of say it stayed active and kind of took care of yourself, made an active effort to do that. How much do you think that played a role in how well everything worked and how good your health was through your pregnancy?
Kristy: Played a huge part… At the time my mum has always still up until now during periods of illness came over to my house and did physio. I did all my treatments… And I have other than the period with the restaurant and a little bit, when I was younger, I have always kept pretty active. I’ve always been quite active, loved surfing. This is my goal now to get back on my board at the moment. I think that definitely played a huge part in having such a dream run with my pregnancy. And I think in general with CF I think it’s important to stay active and I’ve noticed my health flails whenever I’m not active
Keegan: Already, just a couple of the guests that I’ve spoken to on this podcast already. That seems to be a recurring theme. There are people that have had some really, and again, I know I’m not biased in any way diminishing clinical medical treatment and obviously, everyone as well has very different circumstances. But I do think there seem to be people who’ve had good experiences as a result of basic eating, well being active, if they can and doing those kinds of essential things as a mum, those obviously the pregnancy, it sounded like you had a real, a dream run there and that was quite a blessing. But then following that, of course, you’ve had 12 years as a mum. And as a mum with CF has that presented any challenges for you through the journey? What I imagine is a very complex journey of parenting?
Kristy: Yeah, so it certainly has. I think for me, one of the biggest challenges through the whole thing is trying to create a normal childhood and then pre-teen experience for my daughter. It has got a mother who has grown up chronically unwell after the restaurant incident. I had a huge period of sickness where I ended up on the transplant list for a double lung transplant. My FEV ended up at its lowest, at 22%, I was on 24-hour oxygen. I was dragging an oxygen cylinder around. I dropped down to like 48 kilos and Tula was virtually my carer during that time. It was really difficult for her to go through that. And for me to go through it with her.
Keegan: Imagine she didn’t mind that though, but you might’ve felt guilty about it that you’re putting this on your daughter, but she probably was just more than happy to be there for you and look after you.
Kristy: I think on a global level, mother guilt is something that’s huge. Let alone when you thinking, oh my God, I’m going through this. I remember the worst conversation I had to have with Tula, which was a huge challenge was before I signed transplant paperwork, before I got listed I had to ask her who she wanted to live with. If something happened to me, I was doing my will of varying guardianship paperwork. And my advanced care directive. And it was massive. You don’t want to have those sort of conversations with your child. So that was a massive challenge. We got through it together, I got a mental health plan for our GP and she was fine. She said she was coping fine, but she still went [inaudible 11:40] on and, but that was a really tough journey. And sort of being faced with that whole, what happens if I do pass away trying to work out what happens with your child after that all massive challenges and as a parent, that’s something [inaudible 12:01] A little bit more in the forefront.
Keegan: Oh, absolutely. To say that’s a massive thing is an understatement.
Kristy: On the flip side of it, when we have that horrible year, last year was about six months in hospital with only short periods out Tula was at my mum and dad’s and her dad helped with her care. I sort of got in the headspace so that I didn’t spiral out of control mentally into depression or anything with, okay, how do we move forward from this? How do we make this a good experience. What’s to learn from these may lying in intensive care, looking at four walls going well, have I lived a good life? Is this the end all those and I had some amazing conversations and journaling together… I always journal when I’m in the hospital often try and make it a bit of a holistic experience where I take the herbal teas and the [inaudible 13:02] and I try them as an experience where I take the self-help books, where I try and really mentally get my head around stuff as well because it’s so all on focusing physically.
Kristy: And I try and always teach her to approach to use gratitude in what are we grateful for, even though all this is going on and what have we got to be positive about… And even though it was a really hard journey and there is a lot of guilt we’ve come full circle and we’ve used it a lot to grow individually. And I know it’s helped roll off and refocus for the future. It was an absolutely terrible time. It’s the worst, worst form I’ve ever had in my life, I think. And I’ve been through a couple of little hiccups, but I think out of all bad can come good. And even as I said, even though there’s a lot of guilt there, there’s also a lot of positivity that came out of that as well.
Keegan: Congratulations on that, that is no small feat to have that headspace and that perspective. And it sounds like you’re teaching and imparting on your daughter, some wonderful qualities and skills. Is that something that goes through is a common thread through your life and other parts of your life? It strikes me as you are someone that’s able to take a bad moments and look at the positives and the winds out of those challenges.
Kristy: Definitely. I still see a psychologist regularly. I’ve seen the same psychologist for about five years. She has phone appointments when I’m in hospital, I’ve got some great strategies in place for when I start to waver a bit mental health-wise.
Keegan: I always talk about psychology. People talk about telling it to a psychologist or a therapist is like a sign that there’s something wrong with you, but I sort of say, well, you get a… Like you get your car serviced when there’s nothing wrong with it because you don’t want something bad to happen. So you don’t have to be in a bad place to be aware and staying in check of your mental health and looking after it.
Kristy: It’s about always being on top of it. Always getting the extra tools that you may need depending on what’s happening with your life to be able to then handle it. And that’s something I definitely try and teach Tula as well. But that’s the question. That’s been an attitude that I’ve tried to adopt. I’m not obviously there are times where I have well and truly fallen off the wagon but that’s something that I try and adopt through my life.
Keegan: People with chronic illnesses and just talking to people with CF real common theme, they just seem to… Know what I’ve spoken to yet is they don’t talk about it like they feel, why me, or why have I got this struggle or they feel like they’re being hard done by, or they’re sad. Everyone sort of looks at the positives and actually has a better outlook almost because of some of the challenges they’ve gone through. It sounds like you’re very much the same. And what, so what’s next, what’s coming up on the cards for you
Kristy: In March. I accessed a new drug that’s going on in the CF world called Trikafta, at that point, I’d just been listed for transplant. I had a 22% lung function and it’s now jumped since March up to, I think it was 42% at last read and climbing. I’m back exercising. I’m off oxygen, I’ve put on weight, I’m off the transplant list. So prior to that work wasn’t an option like, so I had a period off work. Now I’m studying, I’m working two jobs and I’m back working with a client. I’d worked with pre sickness with the NDIS and I’m doing some adult learning support for a local community college as well at the moment. But I’m thinking about going back to uni next year and finishing along the social science route that I went down
Keegan: For someone that was on the transplant list not long ago and on oxygen 24 hours a day, you’re just doing everything and so excited about it. That’s phenomenal. Well, hopefully, that journey continues for you and you get back and all those things that you wanted to do, whether you decide which way you want to do study-Wise. It sounds like you want to do it all, but might have to prioritize a few things, but it’s been fantastic talking to you. Thank you so much for sharing everything you have with, for joining us as one of the first guests on the podcast this year.
Kristy: No worries. Thank you Keegan very much for having me.
Keegan: Thanks for listening to this episode of the CF strong podcast. Make sure you subscribe on Apple Podcasts or your favourite podcast app. So you don’t miss the next episode. If you enjoyed this, we’d really appreciate it. If you could leave us a review on apple podcasts to help other people find it or share us with your friends. Also, we should take a moment to remind you the views expressed in CF strong podcasts may not be reflective of cystic fibrosis community cares viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible with support from the Australian government and was produced by CF community care and CF Western Australia. Thanks for listening. And we’ll talk to you next time.
If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our readers.