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Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
Social Media Pages:
Apple Podcasts
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MeWe
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YouTube
Website
spk_0: 0:04
Welcome to heart to heart with Anna featuring your host on a Gorski. Our program is designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an endorsement. Welcome to
spk_1: 0:27
the 10th season of Heart to Heart with Anna, our penises in his education for hot
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warriors, and we have a great show for you today. Today's show is one hard warriors educational experience Down Under. Megan Tones was born with a congenital heart defect or C H. D, and had surgery at four months of age. Her first surgery was a pulmonary artery banding, followed by a ventricular septal defect repair at five years of age, a right ventricular outflow, tract reconstruction or R V. O. T. At age 10 and my troll valve repair. At 25 at age 29 Megan had a catheter ablation growing up in Australia. Megan knows what it's like to have a heart defect in school as well is the community at large. While her condition is currently stable this 34 year old heart warrior also has to see a pulmonologist for lung insufficiency. While there are no surgeries looming in her future, Megan is moderately, physically limited. Today. Making will share what it was like growing up in Australia with a C H D. And how she feels that her experience of the educational system as a heart warrior is just as relevant today. And she'll share some advice with us about what she has learned. So welcome to the show, Megan.
spk_3: 1:41
Hi, Enter. It's great to be here. Thanks for the invite.
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Oh, I'm so excited to be talking to you in Australia. I love how the Internet allows me to connect with people all over the world.
spk_3: 1:52
Yeah, yet so wonderful.
spk_2: 1:55
Well, let's talk about when you had your heart defects as an infant and as a small child, did you have all of your heart surgeries and procedures in Australia?
spk_3: 2:06
Yes, I did. I grew up in Brisbane and I've had all of my care at the Prince Charles Hospital. So those really lucky as a baby, my mother realized when I was six days old before I went home from the hospital that something didn't seem quite right. I was gaining a lot of white, but getting really Clyde out with feeding and not feeding very much. So the math just didn't add up there that I was gaining weight and not taking much in. So that was the first sign that there was a problem. And so I think what happened was that I was move to the Prince Charles by ambulance, and they did some investigations there. And so I spent probably about the 1st 4 months of my life in hospital, Pretty much.
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Oh, wow.
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My mom was there as much as possible. She told me that she would feed me with an eyedropper
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o s
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so that I could get enough to eight years. Yeah, and she's very creative. My mom is, and she has a quilt that she made when I was in hospital so she would stay there with me and work on this quilt and keeping our May. So yeah, yeah, I guess the first few months were very tough for mom and Dad. And for May as well. And my older brother, Of course.
spk_2: 3:30
So you do have an older brother I was wondering, is there anyone else in your family who has a congenital heart defect? No, no, not exactly.
spk_3: 3:38
Although we did find out something interesting. My mom was chosen to be a a research participant on this big project about women's health, and part of that project involved getting an echocardiogram and actually did find a very small hole in her heart. But it was something that was on the picked up because she was part of that program. She didn't actually have any symptoms, so I don't know if that's the same as a congenital heart defect. But that's the only thing that's come up in our family apart from myself, of course.
spk_2: 4:14
So have they decided to just ignore the hole in the heart? Said she say symptomatic?
spk_3: 4:21
I think so. At this stage, I'm not sure if they're going to sort of worry about it, but it's always good to know these things.
spk_2: 4:29
Sure, absolutely. And so your older brother is fine. He doesn't have any heart defects. You have any younger siblings?
spk_3: 4:37
Yes, you have a younger brother who's eight years younger than May, and I know before he was born, they did ultrasound and checked his heart and they didn't pick up anything, which was very fortunate. And he's heart healthy as well.
spk_2: 4:52
Wonderful. That's just wonderful. So why don't you tell us about what you're doing right now? Are you married? Are you a parent? Do you work?
spk_3: 5:01
Oh, right now? Yes. I'm doing a lot of things I've bean married for. Oh, I lose count of how many? Sorry I have to do the math. I think it's 13 years this year.
spk_2: 5:15
Oh, wow. Congratulations.
spk_3: 5:18
Thank you. Thank you. Yes. So there's that and I've got four little dogs. Hey, keep me very busy. The lovely little Fox terriers. If you're on my Facebook, there's quite a few photos of thumb on there. So
spk_2: 5:32
we'll have to make sure we have some of those in your slide show. So you're her baby. So you gotta have for baby pictures in your slide show.
spk_3: 5:40
Yeah. Yes, yes. Absolutely. Yes. Oh, we've had them all for about nine years. They came from the I r S P c A. So I feel very much like on the pack leader in my house, trying to keep
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them all under control. Absolutely.
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And I also worked as a researcher with three different universities on some education and health projects. So all of those things keep me fairly busy. And, you know, I tried to have a bit of work life balance. But if that could be a bit difficult sometimes,
spk_2: 6:15
absolutely. So you are keeping super busy even though you did say in your bio that you're someone physically limited. I hope we get into that a little bit more in a second and third segment because I'm wondering how that affected you as a child. So we're gonna take a quick commercial break. But don't leave yet listeners, because when we come back, we're actually going to talk to make it more about her history and specifically
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about what it was like to go to school with a congenital heart defect in Australia. When we returned to heart to
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heart, with the Ana
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the most common here, she always needed a lot of attention. She had strokes. Even though it's a national inclination to withdraw from the CHD community, I think being a part of it, help me be part of the solution
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Heart to heart with Michael. Please join us every Thursday at noon. Eastern. I'm Michael even on I'll be your host is we talked with people from around the world who have experienced the most difficult moments
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forever by the Baby Blues sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's
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many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify.
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I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.
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Enjoy music Home tonight forever Back to our show Heart to heart within a show for the congenital heart defect community. Today show is one hard
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warriors educational experience down Under, and we're here with Megan Toes, a 34 year old heart warrior. Now we're going to talk to her about what school was like. So, Megan, do they have kindergarten in Australia? When did formal education begin for you? Yes,
spk_3: 8:22
they do have kindergarten in Australia, and I started going when I was four to the old Lee Kindy knew my house. That was two days a week that I'll go to Kindy. And I was a pretty quiet kid. That was just my personality. I think, you know, part of it was probably not having as much energy as other Children, but I used to have such a great time with mum and dad at home that I kind of didn't really want to go. But I had a few close friends there that I used to hang around with those pretty much like that at school. I had a few friends, and there were things that we like to do together. So, Kindy, you know, I like the Legos and painting and art. I I didn't like when it was time to tidy up and play outside quite so much. But on the whole, it was a good experience for May, I think. And of course, during that time, when I was in kindergarten preschool at the same place, I have my big surgery,
spk_2: 9:20
right.
spk_3: 9:21
I don't remember so much about it before him, but Mom said that I would go to Kindy in the morning and I come home and I just go to sleep when I got home. So I was so tired. I don't remember so much about that. But I do know from photos there was a huge difference before I went from my surgery. And often it was a completely different color.
spk_2: 9:43
Really? Wow. So you must have a blue before you went to surgery. And then you were much Pinker after.
spk_3: 9:49
Let's right. Actually, I should say I haven't Avi estate, but it's a really big one And say technology back then that we had available. My parents didn't get a diagnosis until I was about to. So when they started off with the pulmonary artery banding, the doctor told me much later on, they weren't quite sure which way they were going to go. So they treated me like they would treat a child with a single ventricle on. Then it wasn't until I was, too, that they saw that there was actually enough tissue to put a VSD patch in. So I was so lucky that they're able to do that.
spk_2: 10:27
Yeah, you would have a totally different life, I imagine if you would have had to go the other route. So this sounds like you had most everything done when you were still just a little one. Just not even five years old, right?
spk_3: 10:42
That's right. They're done. I guess the most important repairs before I was five years old, which was really good, that they're able to do that. I mean, when I was 10 I started to have problems again. Yeah, the big surgeries roll down by the time I was going to school.
spk_2: 10:58
So in his early years, did you ever feel bullied or singled out by the Children? Especially if you were so tired? I imagine you couldn't play like the other Children could. Not
spk_3: 11:11
really. I was pretty lucky, actually. As a kid, I've heard some terrible stories about other Children with heart conditions being bullied. And quite frankly, I can't believe that other Children would be so cruel like that. No one really made fun of me for having a heart condition. If, if anything, they seem to be more fascinated than it asked me questions about that. Sometimes the eye thing was that I was a pretty sensitive kid, and sometimes I get upset really easily, and sometimes kids would make fun of me for that. I don't know if that was just my personality or if it was reflecting some of the stuff that I've gone through with my surgeries and that kind of thing. But having settled that, I really didn't like situations where my physical differences were really obvious. Sure, I really, really didn't like sports days. I would beg my parents. Please don't let me do Sports Day. But of course, that didn't work, and I would always have to get out there and try. Yeah, I can remember a few situations where it was embarrassing for May, but no one made fun of me
spk_2: 12:19
closure. Well, that's good that the kids didn't make fun of you. They just accepted you for who you were. And I wish all the Children would be like that. Like you, I'm just mortified when I hear of how unkind Children can be to one another.
spk_3: 12:33
Yeah, yeah, ice to see it at school with other Children. To some people, just be so mean to them, it was just awful.
spk_2: 12:41
Yeah, well, puberty is a difficult time for anybody, but often times it's even more difficult for hard warriors. What was your experience during puberty?
spk_3: 12:51
I was diagnosed with Scully. I assist when I was 12 so puberty for Mei was about getting curves in all the wrong places.
spk_2: 12:59
Oh, no. Uh uh.
spk_3: 13:02
S o in regards to my heart. I don't think I was having so many problems with my heart, but I did obviously grow quite a bit. In the end, I ended up buying probably about 25% more than when I started. So that was obviously a bit of extra load for my heart. And I did notice that I had problems with fatigue and sometimes with arrhythmia. This is Well, I could be sitting in class and my heart would race for, like, 20 minutes and then go back to normal. But probably at that time, the hardest thing for me was having to wear a back brace for three years. I really didn't like that. It'll
spk_2: 13:37
right, Right. That would be really uncomfortable. I remember as a kid reading Judy Blume's book, Deanie Dany. Yes. Yes. And she had to wear a brace. And I remember reading that story and feeling so sorry for her. Seems like you're familiar with that story as well.
spk_3: 13:54
Yeah, Yeah. I didn't actually read that one closet guinea. I didn't know about it, but it was a really good book. Judy Blume, right? Some fantastic books.
spk_2: 14:03
So do you think she explained what it was like living with scoliosis in a realistic way? It's been a few years
spk_3: 14:10
since I've read, I think, from memory. The girl in that story had one of those Milwaukee braces that went right up to the next, so I didn't have one of those. But those books, they were a little bit dated, but I think that the experiences were essentially the same.
spk_2: 14:26
So the scoliosis. I'm hearing more and more heart warriors talking about that, aren't you? It seems like quite a few people who have been Java heart defects also end up with scoliosis.
spk_3: 14:38
Yeah, yeah, the way that it was explained to man it makes a lot of sense is with the scarring in the way that they stitch you up. It kind of pause your body a bit in one direction, and I have that scar under my left arm from the pulmonary artery banding and the curves of guys to the opposite side. So I think that could have had something to do with it. But I'm not really sure 100% but I think it's possible.
spk_2: 15:05
So you wore a brace. And did that end up correcting your scoliosis?
spk_3: 15:10
Night night wasn't actually designed. Thio. All the back brace is meant to Dior. At least at the time I had one that the one that I had is to stop it from getting any worse. And I was My family was really worried about me having to have another operation because of all the stuff that happened with my heart. I know a lot of women who have congenital heart disease also have surgery for scoliosis as well, and they okay, but it wasn't something that my family wanted to put me through. And I mean, in some ways I think it would have been good to have the surgery. But then, if there's been a problem with it, it wouldn't have been worth it. Toe have that. I don't think
spk_2: 15:52
rights, right? The most supported thing was your heart and the scoliosis was something that you could live with, but the other possibility of compromising your health with another operation, I can see where your parents wouldn't want to go there. If they didn't have to sew, it seems like then the brace pretty much did what it needed to do and preventing you from having worse. Scoliosis. Yeah, I think
spk_3: 16:15
it did. I mean, the thing about surgeries to particularly the line that they're performing here back then. I don't know if it's changed now, but they don't correct it 100%. It's a bit like a heart operation. You know, it's a repair, but it's not like, Hey, wake up from your operation. You've got a totally normal straight spine. You've got effusion. There s So what's it like, a repaired condition. And you have to be careful with that, too.
spk_2: 16:38
Sure. Absolutely. So did the Children at school. Now, by this point, they're teenagers or preteens. Did they tease you for the bracelet? You war? Could they tell that you were wearing a brace? Yeah, they could
spk_3: 16:51
definitely tell. But I only remember one kid calling me fat, which wasn't very nice, because I mean to me, when I put my brace on, I had a horrible time trying to find clothes to fit over the top. I I didn't want to cut at all. I did think compared to before, it did make me look fat. That was what I thought thought about myself at the time. But on the whole, actually, the people that I went through in high school, most of them were actually really nice. I remember going on a school camp in the other. Girls were curious about it. They wanted to try my bracelet.
spk_2: 17:26
Oh, my goodness. So I think it was a
spk_3: 17:29
good thing for them. Like they could then see what it was like to have to wear it. So, yeah, they're actually really nice about it, but I would have preferred not tough to wear it because I'm taking it on school camps, having to go out walking all day, wearing it in the heat.
spk_2: 17:45
Oh, that would have been awful.
spk_3: 17:47
Yeah, yeah, actually got some horrible rash from living toe. Wear it the whole time on a camp which meant that I didn't have to wear my brace for a while. So So
spk_2: 17:59
I locked the trips to
spk_3: 18:00
the pool because the doctor told me if you're in water up to neck in a swimming pool, you don't have to wear it. So I actually went to the pool a lot, and, uh, my my parents actually put in above ground pool at home, which was a big sacrifice for them, but it made a huge difference. And of course, if you're the only kid with a pool, everyone wants to come to you have sores so that that was fabulous. That was really good on. Unfortunately, we moved house a year later, but at the time having that pool and I just changed goals and everything. So it was a really good life for me to make some friends a swell.
spk_2: 18:38
We'll talk about making lemonade from lemons. I love it. I didn't I love how your parents were so supportive and understood how uncomfortable that must have been for you, especially in the summertime. And so what wonderful parents I would love to meet your parents. We do need to take a quick commercial, right? But don't leave yet friends,
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because when we come back, we're going to talk to make it a little bit about her experience with school life.
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Down Under will be a right back.
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When I saw somebody of the sea extreme groups growing, I found family just ready to join May. Anyone who is a member of the adult congenital heart defect community can be a guest on our show. We have a great year planned, and we look forward to sharing other interesting topics. Heart to heart With Poland David Serving a CHD community Wednesdays at noon Eastern You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down, show police in an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with them. Welcome back to our show Heart to heart
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with a shell for the congenital heart defect
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community. Today's show is one heart warriors, educational experience Down Under, and we're with Megan Tones. She's been cheering about what it was like for her going through the educational system, and I'm so happy for a change to hear that the Children did not believe you and instead seem to be rather sensitive to your plight. That's really nice, because a lot of times I've had people come on the show and it's been just the opposite. You really have a few minutes left, Megan, but why don't you talk to me about what your high school experience was like, because a lot of people tell me that school is fine until they hit high school. And then all of a sudden the sports, the ban, the physical activity, just moving from class to class. That's when they can start to see a real difference.
spk_3: 20:40
It's quite interesting with high school. I didn't sort of notice too much of a problem, probably till I got till that year 10 when the expectations on the students for a lot higher for homework and that sort of thing and a couple of things that I do remember was that teachers would say that mine. My books were always really messy and disorganized, and I seem to have a little bit of trouble with organizing essays. Teachers had sad talk a lot about the details rather than the big picture. I also got some tests done when I was older with an occupational therapist, because I was having a lot of difficulties with learning to drive and I came out as having a couple of problems with working memory and visual scanning, so they're obviously some difficulties there that I was able to compensate for up to a point, and I don't know if that was related to the surgery's. I'd had him being on cardiac bypass or if that's just part of my neurological makeup. That would have been that. Why, anyway? But I think I did have a couple of little learning problems that I was able to compensate for, because at school I was lucky. I was always one of the brighter kids and all this hose, known as it would have a nerd of something like that. But I think I think that was something that really did help me to cope ahead. Sure, friends with similar interests and all that sort of thing so that that helped me too cope and get buying school. But I think that there were a couple of little challenges there, and the physical education was a problem. I mean, I didn't really enjoy it, and I wasn't really motivated to do sports I could appreciate. For some Children who really loves sports and want to play, it must be really hard for them. Yeah, tow have limitations, but I know in high school I picked tennis specifically because I knew the teacher would let me sit under the tree and read a magazine with my friends.
spk_2: 22:39
Oh, now. So you didn't actually play tennis?
spk_3: 22:42
Not a lot. Ni
spk_2: 22:43
Wow. Well, it sounds like you knew how to pick the right class.
spk_3: 22:50
Yeah. Yes. I think one of the difficulties that I had with sports was that I did obviously have limitations, but I didn't really understand them very well. My doctor would just say Just do what you did feel comfortable with. So and the teachers didn't know if it was safe for me to play sport. I think they didn't really have much of an understanding. I had some pictures say, Oo, you obviously need to exercise more because you're really unfit and all heart condition. I thought they'd fix that. So there was a bit of a lack of understanding there. I know that the school would have been informed about my heart condition, but I think that it was just difficult to communicate that understanding. And it was something that I didn't understand particularly well, sure myself. And I guess back then, people for even the doctors sometimes thought if you had the surgery Well, that was fixing it.
spk_2: 23:42
Yeah, I've heard that over and over again from adult your age and some even a little bit younger than you that they were told they were fixed. The parents were told they were fixed. And so then when all of a sudden in their twenties or thirties or forties, they start having problems. They're surprised because they're not there were fixed It sounds to me like you had an occupational therapist. Come in and do some evaluations and determine you had a few problems. But it sounds like you did a really good job of coping. So you do research, you said for several different universities. That's correct. OK, so did you go to college for that? Or how did you get the training you needed to do that research?
spk_3: 24:24
Yeah, I did. So I went to university, and I should say, when I finished school, I wasn't really sure what I wanted to dio. I had a part time job in a shop and I found that really exhausting to be on my feet all day. I was thinking a little bit about the things I had difficulties doing, I suppose, and I thought, Well, I can't I work in a restaurant or a shop my whole life. I don't think I'll be able to do this. So I picked psychology because I thought it was interesting. That was really the only reason there was no no sort of big plan, and I was lucky to get into honors year att at University. So I got a great point average of 5.6, I think, and he needed a 5.5. So it wasn't that I didn't work hard enough. I had real problems with fatigue, probably more so from back Grade 10. On one side, I did as much as I could, but I felt like if I had the energy to study more, I could have probably achieved better marks. But luckily, I was able to get into fourth year and do research training. And then through my contacts at the university, I signed up for mental program in Sir JIA and got placed with the researcher at a nearby hospital, and I was able to build work from that and just do a number of contracts in research work. So in that respect I kind of fell into research. There was no big plan and I'm just really lucky that it's a job that I've been able to continue doing because I can work from home sometimes. And I think that I really do. You need those accommodations. Not everyone does. Everyone's different, but for me, being able to work from home sometimes is a huge help with the fatigue. If I just don't have the energy that you get out of bed early and get on the train that day,
spk_2: 26:17
absolutely. And you can probably be more productive being in your own home, where you can rest when you need thio instead of having to dash here and there and everywhere.
spk_3: 26:28
That's right. Yeah, there is a lot of dashing here there and everywhere, but it's good to be ableto have 1 to 2 days a week at a time if I need to.
spk_2: 26:37
So what advice do you have for parents apart warriors in Australia? Or anywhere, for that matter?
spk_3: 26:43
Well, actually, I've got a really good piece of advice. Those a lady I worked with one time who had a background in inclusive education and she would always tell parents, she said, You're an expert in your child. If you've been raising them for five years before they go to school. That's a PhD right there, but I guess I can only say some things that really helped me personally. One of the best things my parents did for me was get a dog that got me out of the house walking every afternoon. It's a big responsibility for a family to have a dog, those sets bills and supervising the Children with handling the dog to make sure they're responsible enough and all that kind of thing. But for May, having a dog pretty much. My whole life has been great for my physical activity with getting out every day and another thing that my parents did, which I didn't really appreciate at the time. But I can look back on it and see how important Waas was to encourage me to be independent so I would walk to school. But not every day. Obviously, if I was really ill, they would drive may, but making my own way to school, making my own lunches, ironing my school uniforms, I found all those things tiring. But now that I'm an adult, I have nobody to iron. My clothes started all things. It was all things to prepare me for. Adult life, of course, is a kid to see how the kids whose parents just gave them everything they wanted. And I think all why can't my parents do that? But it wouldn't have set me up very well for adult life they had. So I think, encouraging the independence as much as possible because one day you do have to manage your own health and remember to take your tablets and all those sorts of things that that was something that did really help me in the long run, even though I wasn't too happy about it at the time.
spk_2: 28:36
Sure well, those are excellent pieces of advice, and I don't think it matters whether you are in Australia or the United States or Africa. I think encouraging our Children to be independent gives them the freedom to fly their own path and not be stuck in a dependent relationship where they can't be who they're meant to be. So it sounds to me like your appearance instilled a great love of animals, so it's no great surprise. You have four dogs that you had a dogs and you're a child and and the independence has enabled you to live. Life is a professional, which I think is just fabulous.
spk_3: 29:12
Thank you. Thank you. Yeah. It was very good to always have animals growing up. And my dad always had cats as a child. He said we always had animals, so it was a wonderful thing to have pets around. I think
spk_2: 29:25
I have three for babies myself, So I couldn't agree more.
spk_3: 29:30
Yeah, Yeah, they're the greatest. They really make a home, I think.
spk_2: 29:34
Oh, absolutely. And there's nobody who loves you the way your pet loves you. So I think that's really special. We have all rescue dogs, just like it sounds like you have rescue dogs as well.
spk_3: 29:45
That's right. Yeah. Yeah, they're the greatest. Stunning. Sometimes they can be a bit more work in the beginning, but it's definitely worth it.
spk_2: 29:53
I think so too. Well, I have just enjoyed this so much better. It is on my bucket list to go to Australia and New Zealand since New Zealand is so close by and when I do so, I hope I can meet you face to face.
spk_3: 30:06
Yes, yes, Absolutely, Absolutely. Will find some fun things to do around Brisbane.
spk_2: 30:12
That sounds great. Well, that concludes this episode of Hart Art within face for listening today. Please come back next week on Tuesday at noon Eastern time. Until then, please find a follow our show on YouTube and you can find my channel very easily by looking at my name. Anna Gorski J W O R s k I. And remember, my friends, you are
spk_1: 30:32
not my heart to heart with Anna is a presentation of hearts unite the globe and is part of the hug Podcast Network Hearts unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource, is pretending to the C H T community. Please visit our website at www congenital heart defects dot com for information about ch D, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.
spk_0: 31:17
Thank you again for joining us this week way Hope you have been inspired on empowered to become an advocate for the congenital heart defects community. Heart to heart with Anna, with your host and Dworsky can be heard every Tuesday at 12 noon eastern time