When You're Married to a Heart Warrior

How is life different for a couple when the wife has a congenital heart defect? This week's episode features Megan and Matthew Tones. Megan was born with multiple, complex congenital heart defects which have required treatment since infancy. Tune in to hear how she and Matthew met, when he found out that Megan had a heart defect, and their philosophy of life and living with a chronic illness.

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Transcript

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spk_0:   0:00
it sort of comes down to that line in the wedding ceremony. Do you take this person for better or worse? Which is to say you take this person for all that they are on every level, including physically, which in Megan's case, encompasses her heart condition. And for me, you know, I, we suppose, feel that for all the trouble that means hot condition has brought to our lives in their relationship. The way we have dealt with everything together as a couple reflects that we're really no different from anyone else in that we to hope, dream and struggle and fail, and that we do all of these things for the same reason that everyone else does for love.

spk_1:   0:56
Welcome to heart to heart. With Anna, I am Anna Gorski and the host of your program. We are in our 14th season, and we're happy you're with us today. Today show features a very special couple, and our episode is entitled when you're married to a heart warrior. The couple we have with us today is Megan and Matthew Tones. During Segment one will be talking with Megan and Matthew about how they met in Segment two. We'll talk with them about some of their travel experiences. And in the final segment will have Megan and Matthew ta tas about their future together. I'm happy to welcome back Megan Tones. She has been a guest on heart to heart with Anna in the past, and she often helps me with script writing for this program. Megan and Matthew were married in 2000 and three. Megan is our warrior. She was born with multiple congenital heart to fix. Welcome to heart to heart with Anna, Megan and Matthew. Hi. Hi.

spk_2:   1:53
It's good to be back.

spk_3:   1:56
Well, I'm so happy that we have this fabulous opportunity to be together, even though I'm in Texas and you are in Australia.

spk_2:   2:05
Yes. It's amazing what we can do with technology.

spk_3:   2:08
It really, really is. Megan, I want to start by asking you how the two of you met.

spk_2:   2:14
Well, ironically, it was through the miracle of technology because we met on the Internet. So back in 2000 there's this website called the Spark, and when I was in high school, a group of my friends and myself used to like doing the quiz is so you could through these tests to find out what your personality type waas when you were going to die things like that. One day I was just time on the school holidays by myself. I was browsing around on that web, saw it, and there was a test there that I hadn't done. And it was a dating personality test. So I didn't actually realize that by doing the test, those creating a dating profile until it else for my fighter and I thought, Well, why? No. So I found what I thought was a realistic picture of myself that also showed my personality a bit. I was trying on my formal dress in my room, but I didn't have my hair and makeup all done up. So showed me as I naturally waas. There was a stack of my CDs in the corner and a cure poster on the wall, so I actually got quite a lot of responses. Are mainly guys asking Mike your poster or some of the CDs I had, or you know, something else altogether

spk_3:   3:36
that's addressed E

spk_2:   3:37
Yeah, yeah, There was one guy that I met on there that I actually got along with quite well, and you didn't ask for any of those things, which was a really good start.

spk_3:   3:47
Ha, ha ha.

spk_2:   3:48
So we could only really communicate via a chat room back then. So using this thing called C Q, which was called Internet Chat Cure so you would type something, and then you would sit there waiting frantically while the other person would Raiders and I would respond. But for us, the chat between us flowed pretty easily, and we got along really well. And after a month we decided to meet in person. So originally it wasn't really like a date. Matthew told me that he really wanted to go clothes shopping because he didn't like many of the things that he had apparently, and I also had some music tapes of mind that I wanted to give to him. So I knew my parents would never let me make some guy off the Internet, even if it was just a pawn shop angle of trading types. So I told some of my friends at the shop where I worked when I was planning to do and took a friend with me on the day, and we agreed to meet just outside the station in town.

spk_3:   4:59
So you both just happened to live in the same town, or was this chat a local thing?

spk_2:   5:06
Yes, we did. That wasn't a local thing, but we lived in Brisbane, which is a very big city, but on opposite sides of town, so takes Baton Air and 1/2 to get from one person's house to the other. So it wasn't really closely. We didn't have to fly or anything like that.

spk_3:   5:27
Wow. So you met this guy on this chat and decided to meet you were smart and took a friend with you? What happened when you finally saw each other face to face?

spk_2:   5:41
Actually, I remember. I called him in the morning just to make sure that everything was sort of okay. And, you know, neither of us was running late or had any sort of last minute emergency. So I had spoken to him on the phone and it was a very short conversation. I think it was just something like, I've got the tapes and I've brought this food along and he was just sort of like, OK, well, I'll see you in a an hour and 1/2 for something we didn't sort of talk for very long, and I think that I have got in first. And I remember I was sitting outside on these seats with my friend and he came out of the station. Huh? Remember thinking something like, Well, he looks like his photo,

spk_3:   6:28
which is always a good sign, because sometimes people will post a photo and it doesn't look anything like them. And then you wonder if you can't be honest with the photo. What else are you hiding?

spk_2:   6:39
Yes, that's right. And that was something that was really important to me. I remember I saw his experiment. Okay, that's a real photo. This him and his guitar, and you'd see some photos on there. And people are just sort of, you know, a photo of a dog or a table with about 20 people. And they see that person at the back, and you can only see half their arm. That's me.

spk_3:   7:01
That My God, I mean, that was really

spk_2:   7:06
important that someone had on its I.

spk_3:   7:10
Well, yeah, absolutely. That would be important. So when you finally did meet face to face, were you able to start up talking like you would if you were chatting. Or was it? Yeah. Yeah, Yeah,

spk_2:   7:22
I think so. I mean, I felt like May using the Internet was a really good way to sort of become friends first and just see whether you could actually get along.

spk_3:   7:34
Sure. Absolutely.

spk_2:   7:36
As opposed to you and I going out somewhere, seeing someone and thinking they were Peron and just hoping that you actually have things in common.

spk_3:   7:44
Right? Right. So, Matthew, how did it feel when you first met Megan?

spk_0:   7:50
It felt good. I was very excited. As Megan mentioned, she had arrived at the train station first. Then I came out to meet her where she said you would be, and she was there on time, which was a good thing. Just all his exacting

spk_3:   8:06
has.

spk_0:   8:08
And she, too looked the same as a photo, which was also a good thing, which made it easy to spot her. Sheriff, I was really excited to see how we would connect face to face. So once we said hello and she introduced her friend, which I didn't know about until I I Okay. Okay. That's fun. I wasn't bothered. We hit it off very naturally. Just talking about what we were going to do for the day, and we just went from one topic to the other about things we had an interest in and what we had in common and just what we thought of things and it just flowed so naturally.

spk_3:   8:51
That's awesome.

spk_0:   8:52
I didn't have to think about what I was going to say and be so nervous about. It flowed so naturally that by the end of the day, the only reason we ended up having to go home was because it was the end of the day and we would like to have kept talking, et cetera. But we needed to get back home, and it was a long way to travel back Home's

spk_3:   9:14
right it

spk_0:   9:15
I really like to keep talking, but I really have to go that I was a great day, so it was a really good start.

spk_3:   9:21
Well, when did you find out that Megan had a heart defect?

spk_0:   9:26
Well, the first time that I heard about me and having a heart condition was actually when we were discussing what we were going to do on that day, we met in person for the first time since we were going to be walking around for most of the day looking for close to try it on. Or Boy Megan mentioned that sometimes when she got a bit worn out, her heart would race that is, should haven't attack of arrhythmia and that sometimes it wouldn't go away

spk_3:   10:01
on.

spk_0:   10:02
She would have to go to hospital, which is not good. So I said, Well, I'll bring plenty of water and we can stop and sit down for arrest as often as you like Whatever works for you. I didn't really Oscar too many questions about her heart condition at that stage, because I've just felt that she was more than mature enough to tell me what she needed to or what she wanted regarding her heart condition and were any subject for that matter. And I trusted and respected that. However, the first time I would actually begin to understand what it meant for me in tow, have a heart condition, would come a couple of months after I and met her when we were talking on the phone one night and she complained that she'd had chest pain and she'd been enduring that throughout the day. It was getting quite bad, and I think her and her parents or of the impression that she before and it would go away, that type of thing. What? From talking to on the phone and just listening to her. I said, no, you really don't sound good. You need to go to the hospital. And it helped. This is serious. So I managed to convince her. And then she so talk to her parents and she went to the hospital and I said I would travel immediately to her house. So it took me about two hours to get there, and this was that night. There was a lot, obviously all unplanned. And when I got there, she was already at the hospital being treated. And when she came back, it wasn't until something like 2 a.m. in the morning.

spk_3:   11:49
Wow.

spk_0:   11:49
And when she got yeah, it was late. I stayed awake the whole time open that she would be all right. Wow. And when she got, she was really tired and worn out, obviously. But at least the pain had being addressed, and she was fine. And I knew we were both really glad to see each other despite everything that had happened, and it only been two months since we first met. That was the first time that I learned now what could happen with her having a heart condition. And I think to It was the first time that Megan learned, I suppose how seriously I considered her condition and just how much I cared about her, too.

spk_4:   12:33
Hi, my name is Jaime Al Croft, and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart liver transplant. I can think of no better way to read the Tin Man diaries than to cuddle up in your favorite hearts. Unite the Globe sweatshirt and your favorite hot beverage, of course, in your hearts Unite Blow mug, both of which are available. The hug, podcast network, online store or visit hearts. Unite theglobe dot Texas Hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone worthy, my father promised me, a golden dressed twirling held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor.

spk_5:   13:24
Heart to heart with Michael please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments.

spk_1:   13:35
Well, Megan, I think Oh, my gosh. I would have said the

spk_3:   13:38
sky is a keeper. Hey, what is this sweet man? I mean, for just knowing you two moments Jill's, I imagine. Oh, my gosh. I mean, I just want to give him a hug, because I just think that is the sweetest story ever. Wow. Ah, I love it. I hope my son find somebody who is this understanding and compassionate as Matthew is with you, that it's just so delightful. Well, now I'd like to know how living with congenital heart defects has affected and or shaped your relationship. It sounds like from the get go. This was something that Matty was aware of and you were actually dealing with issues from early on in your relationship. But now you've been together for how many years? Um,

spk_0:   14:31
by the end of this year will be in 19 years.

spk_3:   14:36
Wow, 19 years. Wow, What a great success story. Okay, so tell me how living with congenital heart defects has actually affected and shaped your relationship

spk_0:   14:50
Well, like in many relationships, people talk about and or think about things they want to do or they need to do. And me, you know, I I'm no different in that regard. And we do all of those things while at the same time considering millions heart condition on top of that, and it's become part of what is normal and what we're comfortable with. I mean, that's really obviously a broad statement, because I just feel there are too many things to mention because it's just embedded in everything.

spk_2:   15:29
Mmm, yeah, it also in the beginning, like when I think back 19 years, I didn't really have a very good understanding of my heart condition.

spk_3:   15:39
Mmm.

spk_2:   15:39
It's the same kind of story here, every way. I've been told by my cardiologists that I was cured and who live a normal life. But I knew within myself that something wasn't quite right there, because normal 18 year olds do not take the Jackson and also

spk_3:   15:59
yeah,

spk_2:   16:00
I think maybe being in a relationship, it's a good thing, but it's also something new and can be very stressful, a swell and just doing uni and then moving out of home. I felt like all that stuff kind of unmasked my conditions of it because I had a lot more responsibilities and I was doing a lot more. And over time, more things have happened with my heart and other organs as well. And there are some very riel limitations. You know, as much as people say, Don't let your heart condition stop you from doing things that there are actual limitations. So, for example, I can't have Children. It's probably pretty unlikely that I'll be able to work until I'm 67 which is the retirement age right now in Australia. While coming to terms with things like this wasn't easy for either of us, the fact that we had some major life choices taken away has also helped us to see things more realistically and more clearly. And a relationship probably doesn't look anything like many other people. A rage, but part of that is out a sin. Ality zzzz Well, well said probably pretty different to a lot of people.

spk_0:   17:17
Yeah, as I said, the fact that Megan's hot condition is pretty much embedded in everything for us, for example, it dictates the type of work meeting can do, where she can work, which then in turn effects my employment opportunities. It also dictates where we can live in terms of health care. Sort of comes down to that line in the wedding ceremony. Do you take this person for better or worse? Which is to say you take this person for all that they are on every level, including physically, which in Megan's case, encompasses her heart condition. And for me, and I, we suppose, feel that for all the trouble, that means heart condition has brought to our lives and our relationship. The way we have dealt with everything together as a couple reflects that we're really no different from anyone else in that we to hope, dream and struggle and failed and that we do all of these things for the same reason that everyone else does for love.

spk_3:   18:29
Ah, I love it. Yes, I just love the way Matt, you was talking about how the two of you fell in love and what your love means to him. And one of the ways that I knew that the two of you seemed to be perfect for each other. Megan was when we were talking about travel and I saw some of your travel photos with your husband and you wrote an excellent as say, That's going to be in the book that I'm producing called The Heart of a Heart Warrior. And so I know that the two of you loved to travel just like my husband and I do. And so I thought, during this segment, let's talk about travel a little bit. Tell us about one of your favorite memories from some of the travels that you have been on with your husband.

spk_2:   19:15
Ah, that's so difficult because there are so many. But there's one I'd like to talk about because it shows something that we've learned from traveling together. We've been to Japan four times in Egypt once, so you've had five trips overseas. What we've learned from all those trips is that heavy bags are an absolute nightmare, walking around all day

spk_3:   19:40
with

spk_2:   19:40
the best of times. But

spk_3:   19:43
brass

spk_2:   19:43
initially here, especially with a heart condition. So we minimize what we take as much as possible, and we've developed what I like to call the Terminator approach to packing

spk_3:   19:57
the Terminator approach to packing.

spk_2:   20:00
I need to explain. It's literally okay. I need your clothes, your boots and your medication medication. And yes, because if I can't handle the luggage myself, my share of it, then that will really slow us down. And Matthew will end up having to carry it all, which has happened on a few occasions. So there was one memory I have where we're walking up this mountain. And it was just really tough for May. I think I was also a little bit sick. I'd caught a cold and we're moving to new accommodation, which was while we had everything. And so he was walking along with a backpack on his front and on his back. Ah, I was sort of lagging way behind, and he got to the top of the mountain and he just put the things down. Fortunately, we're in Japan and it's pretty safe to pop a couple of bags down and leave him for a second. And then he came back down. He had his camera in one hand because he was taking pictures and stuff as well, and he pushed me the rest of the way up the hill.

spk_3:   21:13
Oh my good. This that is a sweet husband. Oh, my gosh,

spk_2:   21:18
what? Working together? Holy

spk_3:   21:20
Wow, I love

spk_0:   21:23
it. It's just one of the things that with me and having her heart condition, As I had said earlier, it's embedded in everything. So it's like anything if we want to do something in life, sometimes you just have to do what you need to do to get things done. But in terms of favorite memories from traveling, one that comes to mind is when we did go to Egypt all the way back in 2013 and we went to a place in Egypt, which is on the Western. Boarded there with Olivia is and we went to a place called Sea Wah Oh, Isis. And it's just a small town in the middle of a desert, really, and all the buildings and literally made of sand. It looked like something out off side was in the mosque. Eiseley bear, where it's all sand everyone Kenobi and Luke Skywalker wandering around in the meat and solo and Chewbacca the first time. It's like that. It's a little bit

spk_3:   22:29
like that. And oh,

spk_0:   22:31
it was really picturesque, and no one was staying at this place we were staying at. We were the only guests, so we had the whole place to ourselves and we got to go to this like and it has such an incredibly high salt concentration that you can float in water. And it was just really want because it's not something you get to experience every day. And we're in aisle of this desert location, no one else around. And we have the opportunity to just forget about everything who we were trying to float in this water. It was just a really magical experience to float on that water and is definitely one of my favorite memories of just being free and experimenting and exploring just the environment we were in and not having to think about the hot condition for any period of time or anything for that matter. That's one of my favorite memories.

spk_3:   23:34
Oh, I love that Megan actually wrote a little bit about that place that G visited, and she even included a couple of photos in her essay. So I know exactly what you're talking about for by Heavy read her essay, and it does look absolutely fascinating. Wow. I love how you're able to find things when you travel that aren't too physically taxing. I mean, yeah, you had to climb up the mountain to get where you're going. That what I'm making? Oh, my goodness. That does not bento. It

spk_0:   24:06
doesn't have to be. I mean, obviously, there are limits there, but so long as you know, sort of what your limits are and your plan, he can have, ah, reasonable idea of what to expect, however, and it does happen to us. It happens to everyone. Sometimes you encounter and we've encountered things where we just knew, Okay, we're not going to make it on time, because maybe there was a time limitation to catch a train or to be somewhere so anything I could do to improve the speed of things. So when we were going up that mountain in Japan, Megan wasn't moving particularly quickly. So I had a backpack on the front and the back and trying to push her up and this constantly watching her and making in his as stress free as possible. That's another factor is just it's just knowing all of your tics and quirks and whatever you conduce to make things work. And sometimes things just don't work out. So it's always a case off. And I think this happens for everyone with travelers. You just figure out what to do, what you need to do as you need to do it if it doesn't go according to plan. And sometimes we've actually found that that's led to, uh, really spontaneous and memorable experiences.

spk_2:   25:30
Yeah. Yeah. Actually, I've

spk_3:   25:32
got one very

spk_2:   25:33
quick story about that. I lost trip to John when we went to Teshima our first night. We were staying in this different end because we couldn't find accommodation for the whole a few days that we were there in one place and we had no idea what we're gonna do for dinner. And I talked to the innkeeper because they didn't have a restaurant at the end. Said, Do you know anywhere where we could get Then I need a vegan food or vegetarian food of possible. And they said there is one place and we can book that for you. We didn't have much choice, so we thought, Okay, we'll go to that place and it turned out to be the best restaurant we've ever been to in our lives. I mean, it was

spk_3:   26:18
a little

spk_2:   26:18
bit pricey, but food was absolutely magnificent. It was called Yuca Cafe. It was a husband and wife team, Iran, the cafe and in. And they were just absolutely lovely people. We enjoyed talking to them all night. We met another couple there at the restaurant who are really interesting as well. And the wife had just made all of this beautiful Japanese food, but with non animal ingredients. So she made the sushi that had ginger on them instead of fish. For example, she denied this wonderful last scream. It was based on a Nana and chocolate in. It was all very fresh, and we've never had anything like it. It was probably one of the best meals we didn't and now lives. And that was just a totally unplanned thing. We didn't look it up. We had no idea what we're in for. And it turned out to be one of most memorable experiences from my last trip,

spk_1:   27:24
Forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's

spk_5:   27:35
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.

spk_1:   27:45
I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects

spk_5:   27:51
join Music

spk_1:   27:52
Home Tonight Forever.

spk_5:   28:02
Heart to Heart with Ama 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 CHD 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_3:   28:38
You said you have some plans for the future. Do you have another country that you want to go to or do you want to go back to Japan? What is the future gonna hold for you?

spk_0:   28:47
Well, why? When we went back in 2013 million and I had never bean overseas together, and I had never been overseas from Australia. And so at that point, just everything was going well. I mean, financially, things were good. The Australian dollar was even more than the U. S. Dollar, so it was definitely a time to travel. So I thought, Okay, if we're gonna go somewhere, let's go somewhere that we would never travel to. And that And when we go there, let's go there as though we're never going to go back. So that prompted us to go to Egypt. And we spent five plus weeks there. So it was a big holiday.

spk_3:   29:35
Oh, wow. Five weeks. I didn't realize it was that wrong. O

spk_0:   29:39
S o. We went allowed for that one. Thankfully, like I said, the U. S stolen wasn't worth as much as $3 back. Not like it is now has a big impact. So we were able to do just so much so again with our thoughts in terms of the future. We definitely love to go back to Japan. There are many things there we would like to explore and investigate, but maybe one of the other places we would what to go because back when Megan, until I met one of the places she mentioned she would love to go to because of the music we were listening to that we enjoyed would be to go do an explore Scandinavia. We should be something,

spk_3:   30:23
huh?

spk_0:   30:24
Really would find rather interesting because they're always yes, from a historical perspective in there, it's just a very different landscape and all of those types of things the same. And it's a different landscape. It's a different culture, different history act. So I think maybe Scandinavia it's someplace would like to travel, too. But at the moment we're probably not going to do that or while or anything. Maybe overseas trips was. The Australian dollar is not being very healthy of late.

spk_3:   30:57
Oh, no, that doesn't mess things up. Oh, no. Yeah, I know the euro has taken a hit lately, too.

spk_2:   31:04
Yeah, the trunk. And also it really is a little work to travel. I mean, it's heaps of fun, and it's very rewarding, but it takes a lot of planning for us in one place that I would like to go. I worked on a project a few years ago in the Pacific Islands, and it was so beautiful. So I'd like to take Matthew sometime to see Fiji or Vanuatu.

spk_3:   31:29
Ah, that sounds lovely.

spk_2:   31:31
Even though I was working, it was just something about the place so relaxing.

spk_3:   31:36
Oh, yeah, that's what you hear. I mean, I haven't been there either, and I would love to go someday. That sounds fascinating.

spk_2:   31:43
Yeah, it's beautiful. I mean, the skies, the beaches, and I don't know my impression. When I got there, it was kinda like stepping back in time. I almost felt a bit like ours on the set of an eighties movie. And it was just really cool.

spk_3:   32:02
Yeah. And it's nice that you went there and the first thing you thought by, So I have to bring Matthew back here.

spk_2:   32:08
Yeah. Yeah. I thought he'd really enjoy it. And yes, So we're just sort of working away saving our money. We've always been good savers ever since we were little kids, both of us. So I think that's another thing that's gone in her favor.

spk_3:   32:23
Yes, definitely. Because when couples have money problems that can cause so many other problems Sounds good. Well, this has been so much fun I cannot believe we're out of time already. I could talk to you all for hours. Yeah, now and I Well, it has been so much fun talking with you. Thank you so much for coming on the show. Megan and Matthew.

spk_0:   32:47
You will?

spk_2:   32:48
Yes. You're welcome. Mat Spain. Really good. It's Sunday. Well, I think

spk_3:   32:52
yes, I think this was a really, really interesting show. The friends. If you've enjoyed this episode of heart to heart with Anna, please consider becoming a patron of our program For the cost of a pizza, you could be a patron for an entire year. We have all kinds of benefits. For those of you who would like to support our program, just head on over to patriotic. That's www dot patri on p a t r o n dot com slash heart to heart. And then you can learn more about joining our team. That concludes this episode of Hart are with Anna. Thanks for listening today. And remember, my friends, you are not alone.

spk_5:   33:29
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 hose down, Jaworski can be heard every Tuesday at 12. Noon eastern time.