When a Heart Warrior Is Living in Heart Failure

Aubyn Baker-Riley is an adult born in 1963 with a bicuspid aortic valve and coarctation of the aorta. She had open-heart surgery at 7 years of age to widen the coarctation and ablations in 2005, 2016 and 2018. She is currently in heart failure.

Although Aubyn is only in her 50s, it's unusual for someone like her to have made it to adulthood. Many people born in the 1960s, and even in the next decade, succumbed to their heart defects before reaching adulthood. What has Aubyn's path been like for her? What symptoms and warning signs has she had?

More importantly, what is it like to live in heart failure? What are some coping techniques that can be used if you are in heart failure? Aubyn answers these questions and more in today's episode of "Heart to Heart with Anna."

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Transcript

Aubyn Baker-Riley:   0:00
I was turning 40 and I was sitting in my living room where I'm sitting right now and it was garbage day and I watched our older neighbor across the road taking his garbage. We live in 1959 bungalows so, our laneways are fairly long. You don't get them in the houses now, like, we can fit probably three or four cars in our laneway. So he was walking his garbage from his door to the end of the driveway for pickup, and I come outside and I take my garbage and I bring it to the end of my driveway. And he says to me from across the road, "Hi Aubyn, how are you?" And I had to take a deep breath before I answered my 80-year-old neighbor who was not winded...  

Anna Jaworski:   0:48
Oh, wow.  

Aubyn Baker-Riley:   0:50
...and I was winded.  

Anna Jaworski:   0:51
Mmm-hmm.  

Aubyn Baker-Riley:   0:53
And I thought, 'you know, there is something really wrong with this. Why is it that my 80-year-old neighbor can do this and I can't do this?' And I came inside and I was on the phone with a good friend of mine and she said to me, "Aubyn, do you think maybe it's your heart?" and I thought, 'Oh, man. Oh no. I think she's right.'  

Anna Jaworski:   1:32
Welcome to, "Heart to Heart with Anna." I am Anna Jaworski and the host of your program. We're in Season 14 and I'm so happy you're here with us today. Today's show features a heart warrior and our episode is entitled "When A Heart Warrior is Living in Heart Failure" and our guest is Aubyn Baker-Riley. Aubyn Baker-Riley is an adult who was born in 1963 with a Bicuspid Aortic Valve and Coarctation of the Aorta. She had open-heart surgery at seven years of age to widen the coarctation, and she had ablations in 2005, 2016, and 2018. She is currently in heart failure. Welcome to "Heart to Heart with Anna," Aubyn.  

Aubyn Baker-Riley:   2:13
Hi, I'm happy to be here. Thanks for having me,  

Anna Jaworski:   2:16
Well, I'm so happy to have you on the show, especially since we were born in the same year.  

Aubyn Baker-Riley:   2:22
That's cool. I know it really

Anna Jaworski:   2:24
It is cool! And you're born on my sister's birthday, so I am never going to forget your birthday.  

Aubyn Baker-Riley:   2:30
I expect a birthday card.  

Anna Jaworski:   2:31
Okay, We're gonna have to make it happen. I was amazed to see that you're my age. because I know that people who were born the year that we were born were often not successful in making it to adulthood when they had a congenital heart defect. So, I'm sure that you have really been watching pediatric cardiology as a field advancing while you've been growing up.  

Aubyn Baker-Riley:   2:56
Yes, I have. Absolutely.  

Anna Jaworski:   2:58
Yeah. So what was it like for you to have a Bicuspid Aortic Valve and a Coarctation of the Aorta that wasn't even operated on for the first 7 years of your life? To me, that's just amazing. Do you remember having problems keeping up with your siblings or your friends?

Aubyn Baker-Riley:   3:15
Well, it's actually a funny question from my perspective, because I had my surgery at seven years of age, but I actually don't remember a lot before I was seven years of age. And why that is, apparently is because of the surgery, apparently, while being under general anaesthetic itself, but also while being on the bypass machine. Oftentimes people will talk about having memories that they lose, and because I was so young I really don't have a lot of memories from before.  

Anna Jaworski:   3:55
Wow,  

Aubyn Baker-Riley:   3:57
There are some that stick in my head and most of those would be what I would consider traumatic kind of events like faintings and things that I could not do. I didn't take phys-ed class in grade one or grade two, because I was not yet able to do the same things as everyone else.  

Anna Jaworski:   4:19
Okay.  

Aubyn Baker-Riley:   4:19
I fainted in choir class because it was hot.  

Anna Jaworski:   4:23
Oh, my goodness.  

Aubyn Baker-Riley:   4:24
And they kept singing, apparently, and I was lying on the floor.  

Anna Jaworski:   4:28
Oh, Aubyn, you poor thing.  

Aubyn Baker-Riley:   4:30
I mean, I remember those things, (right) but I don't really remember being sick because it was how I always felt.  

Anna Jaworski:   4:43
Right.  

Aubyn Baker-Riley:   4:43
If that makes sense?  

Anna Jaworski:   4:44
Sure,  

Aubyn Baker-Riley:   4:45
I with born with this, so I always felt like I felt. And then at seven, they, being my parents, told me that I was having surgery and I went into the hospital feeling like I felt. And then I came out of the hospital after open heart surgery feeling horrible. 

Anna Jaworski:   5:08
Oh, no!  

Aubyn Baker-Riley:   5:09
Because of course, open heart surgery is major.  

Anna Jaworski:   5:13
Sure.  

Aubyn Baker-Riley:   5:15
So in the beginning, I didn't understand. I really don't think I understood...

Anna Jaworski:   5:20
Right.  

Aubyn Baker-Riley:   5:21
...what was really going on. Like, they explained It to me as they would for a little kid.  

Anna Jaworski:   5:27
Yeah, for a little kid, that's hard to understand. Especially if you don't know anything else.  

Aubyn Baker-Riley:   5:32
Yeah, exactly. So all I remember after the recovery time frame, which, by the way, was over Halloween, which sucked because I couldn't go out for Halloween, and that'sa big thing in my world now, like Halloween is a big thing. Always has been since then, I think.  

Anna Jaworski:   5:48
Okay,  

Aubyn Baker-Riley:   5:48
But after recovery, I remember saying to my mom, "I'm fixed now. Mom, I'm fixed down, Mom. don't worry about me. I can do this. I can run. I can jump. I can play. I can do it because I'm fixed now."  

Aubyn Baker-Riley:   6:05
Wow. And your mom probably thought you were too, right?  

Aubyn Baker-Riley:   6:09
Because that's what they told my mom.  

Anna Jaworski:   6:11
Yes. Yes. Oh, my goodness. Okay, so you're seven years old. You think you're fixed after you recover, and I imagine it took you a little while to recover. because recovery from open-heart surgery is not easy. Even if you are seven, you're not a rubber ball. you don't just bounce back like that. There's a recovery period. But then what shocked me was that you went from 1970 when you had your surgery, all the way to 2005 before you had another major procedure. That's 35 years! Were those healthy years for you?  

Aubyn Baker-Riley:   6:44
Yes, pretty much. Pretty much. I was a normal kid, you know, other than I had check ups at the pediatric hospital, obviously annually every year. And then I think it went to every two years, after that. But Mom took care of those and told me when I was going and we went and they did regular ECGs and all that sort of thing, but it was more - It was more like your checkup, "Yes, you're fine. You know, go ahead". And beyond that, I did everything that normal kids did, really. I mean, I wasn't treated any differently. Sometimes I remember going to camp, and mom saying, "Aubyn has a heart defect, but she's fine. She doesn't have any medications or anything like that, don't worry about it."  

Anna Jaworski:   7:32
But it made sense for her to do that because if you were changing into your bathing suit, everybody saw a scar that might have alarmed them, right?  

Aubyn Baker-Riley:   7:39
Well, actually, no, actually, no. My mom had them do my scar on a bikini line. My scar is not an open heart zipper scar. My scar goes sideways along the lines of what is now my bra, but back then, it was like, where you would put a bikini or a bathing suit.  

Anna Jaworski:   8:06
Wow. Okay, You're the first person that I've talked to who has had that. I've heard of people who are actually operated on the side or even more towards the back, depending on what their surgery is, if it was a valve replacement instead of something more midline. Wow, that was very forward-thinking of your mom.  

Aubyn Baker-Riley:   8:29
Absolutely. What she told them, as I understand it, was that I was a girl and she didn't want me to have that zipper that automatically told people I'd had open-heart surgery.  

Anna Jaworski:   8:42
Wow, that's amazing.  

Aubyn Baker-Riley:   8:45
I know, and so it's like, obviously on my left side, basically from where your heart is all the way around to the other side of my back. So depending on what bathing suit I was wearing as I got older, or that kind of thing, you could possibly see it, but unless I wanted you to see it, you couldn't.  

Anna Jaworski:   9:08
Well, yeah. And plus, by the time you were wearing that, your scar was probably, I don't know, 7, 8, 9 years old, so it had probably faded quite a bit.  

Aubyn Baker-Riley:   9:18
Absolutely, Absolutely. It was actually a bit of a joke when I was a teenager, because you know how sometimes as a kid, especially the teenage girl, you maybe unhook your bathing suit to get on even tan on your back, right? Or whatever. And somebody would see the scar and somebody would say, "Oh, my gosh Aubyn, you have a scar on your back," and I would occasionally say things like, "Oh, God, really, What's it look like?" You know, know it was there which obviously was a lie, but because people say the darndest things right when they see something, you're that's obviously a surgery scar. It's way different than any other kind of scar that a person would have. But people say silly things, and so sometimes, yeah, sometimes just for the fun of it, I just joke with people.  

Anna Jaworski:   10:04
Well, let's talk about your ablation. In 2005, you had an ablation, so what symptoms led you to go to the doctor and for them to say, "Oh, I think we need to do this surgery on you."  

Aubyn Baker-Riley:   10:17
Turning 40. Seriously, in 2003 I was turning 40 and I was sitting in my living room where I'm sitting right now, and it was garbage day, and I watched our older neighbor across the road taking his garbage. We live in 1959 bungalows, so our laneways are fairly long. You don't get them in the houses now, like, we can fit probably three or four cars in our laneway. So, he was walking his garbage from his door to the end of the driveway for pickup, right? And I come outside and I take my garbage and I bring it to the end of my driveway and he says to me from across the road, "Hi Aubyn, how are you?" and I had to take a deep breath before I answered my 80-year-old neighbor, who was not winded.  

Aubyn Baker-Riley:   11:09
Oh wow.  

Aubyn Baker-Riley:   11:11
-and I was winded- and I thought, 'you know, there is something really wrong with this. Why is it that my 80-year-old neighbor can do this and I can't do this?' and I came inside and I was on the phone with a good friend of mine and she said to me, "Aubyn, do you think maybe it's your heart?" And I thought, 'Oh, man, you know, I think she's right.'

Heart to Heart with Michael Promo:   11:44
"Texas Heart Institute were offering us a mechanical heart and he said, "No, Dad, I've had enough. Give it to someone who's worthy." "My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor." 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.

Baby Blue Sound Collective Promo:   12:20
Home. Tonight. 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 patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

Questions and Comments:   12:55
You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna Jaworski:   13:16
Aubyn, before the break, we were talking with you about your medical history and being born in the sixties with a Bicuspid Aortic Valve and a Coarctation of the Aorta. And we know that it was your heart, and that's why you needed the ablation and we'll be talking about that a little bit more later. But first, I want to talk to you about your babies. Tell me about how many babies you've had and when you have them.  

Aubyn Baker-Riley:   13:40
Okay, so in that time period, lots of things happened, right? This is a large period of time.  

Anna Jaworski:   13:45
Right.  

Aubyn Baker-Riley:   13:46
My first child was born in 1992 and at that time, 29 years of age, I was not being seen by anyone cardiac. I was considered a regular pregnancy, went through it with flying colors was working full time as a children's aid worker at the time came through until -I think- I worked up until maybe a month before my first child was born. And he was born, as I say, regular hospital, regular situation. I had an epidural. All of that was going totally normal and fine and regular until on the labor table, I went into super ventricular tachycardia.  

Anna Jaworski:   14:30
Oh, my gosh.  

Aubyn Baker-Riley:   14:32
in labor.

Anna Jaworski:   14:33
Did any of the doctors in the room know that you had been born with a heart defect?  

Aubyn Baker-Riley:   14:38
Well, if they did, it certainly wasn't uppermost on their agenda, let's just say.  

Anna Jaworski:   14:44
Oh, my goodness.  

Aubyn Baker-Riley:   14:45
So everybody and their uncle came into the room. We had, of course, the ECG and all these things.  

Anna Jaworski:   14:53
Wow

Aubyn Baker-Riley:   14:53
Exactly. It was a crazy time.  

Anna Jaworski:   14:55
Oh, wow.  

Aubyn Baker-Riley:   14:56
Thankfully, thankfully, everything went well and my first child was born healthy and they checked him out heart-wise, and they checked me out heart-wise, and it basically came down to, while pregnant your heart is overworking your fine, no big deal and nobody thought anything more of it. Basically. So that was in 1992. In 1997, fast forward five years later, I'm pregnant for the second time now I'm 34. Actually, I shouldn't say that, I'm pregnant for the fourth time, second full term, I had two miscarriages in the middle.  

Anna Jaworski:   15:37
I'm so sorry.  

Aubyn Baker-Riley:   15:38
Thank you.  

Anna Jaworski:   15:39
That's really rough.  

Aubyn Baker-Riley:   15:40
It is. Absolutely. Absolutely, and so in 1997, second full-term pregnancy, I was now high risk,  

Anna Jaworski:   15:49
Right, right. And you should have been high risk the first time, but well, who knew?  

Aubyn Baker-Riley:   15:54
Well, not until the very end. Kind of like spot on at the end. This time around, they had me at the high-risk doctor, high-risk nursery, everything was different. Everything was different.  

Anna Jaworski:   16:05
Well, and don't you think maybe you were more high risk also because you'd had those two miscarriages?  

Aubyn Baker-Riley:   16:10
Possibly, possibly. I was also 34 instead of 29. Other things had happened in my life in that time frame...  

Anna Jaworski:   16:20
Sure,  

Aubyn Baker-Riley:   16:20
...that probably meant that they were watching other things as well. So it was a totally different kind of pregnancy. No epidural, they wanted me...  

Anna Jaworski:   16:33
Oh, no epidural?

Aubyn Baker-Riley:   16:33
-they wanted me to be in an operating room. No/ I was in the operating room with gas...  

Anna Jaworski:   16:38
Oh,  

Aubyn Baker-Riley:   16:39
...in case.  

Anna Jaworski:   16:40
Wow. Okay,  

Aubyn Baker-Riley:   16:43
That was the wording was, "in case."  

Anna Jaworski:   16:45
Yikes! Okay.  

Aubyn Baker-Riley:   16:47
Second child also born healthy. I was healthy. Everything seemed fine and at that point, I saw a doctor one time at the Heart Institute here in Ottawa, about six months after my second child was born to make sure that everything was fine, and it was. At that point, everything was fine,  

Anna Jaworski:   17:13
Okay  

Aubyn Baker-Riley:   17:14
...or so we thought.  

Anna Jaworski:   17:16
Oh, wow. Did you decide that you wanted to have more children after that?  

Aubyn Baker-Riley:   17:22
No. At that point, my husband and I agreed, for all kinds of reasons, not specifically for that reason. But I was 34,  

Anna Jaworski:   17:33
sure  

Aubyn Baker-Riley:   17:33
and yes, for all kinds of reasons we said, "that's it," and number two was it. So he went and got the vasectomy so that I wouldn't have to do surgery because, as we obviously know, I'd already done that, right?  

Anna Jaworski:   17:49
(laughter) Yeah.  

Aubyn Baker-Riley:   17:49
So his thought was I could do this,  

Anna Jaworski:   17:52
right,  

Aubyn Baker-Riley:   17:53
because this is easier for me than you.  

Anna Jaworski:   17:55
Absolutely. Well, do you think that your pregnancies may have had anything to do with the arrhythmias that you developed later on?  

Aubyn Baker-Riley:   18:02
You know, it's hard to say. It's definitely possible. Pregnancies are certainly hard on your heart. As we are aware they're hard on normal, if you want to call them normal, people's hearts. So certainly someone with my heart conditions, it may very well be that it caused some of the problems later in life. It may have been the trauma that I had in those ensuing years. It may just have been age, it's anybody's guess, really.  

Anna Jaworski:   18:36
Okay,  

Aubyn Baker-Riley:   18:37
In hindsight, I would have my children, but if I had known that it was going to cause the problems later in life, I don't know. I don't know what I would have chosen.  

Aubyn Baker-Riley:   18:51
So it's kind of a blessing that you didn't know  

Aubyn Baker-Riley:   18:53
Exactly. To me and other people I've talked to in my age group, we didn't know what they know now. They know a lot more now, and given that option now, they can make different choices. We didn't know,  

Anna Jaworski:   19:10
sure,  

Aubyn Baker-Riley:   19:11
...and we're still not really sure.  

Anna Jaworski:   19:13
Exactly, and every person is so different and everyone's heart defects are so different. Even another person who might have a Coarctation and might have a Bicuspid Aortic Valve might have a completely different medical history than you do.

Aubyn Baker-Riley:   19:27
Absolutely.  

Anna Jaworski:   19:28
Okay, So you had this first ablation, and it seemed to be really successful. But then all of a sudden, it seems like recently, you've needed two more ablations and now you're in heart failure. So what do they think is causing the arrhythmias and how are they affecting your quality of life?  

Aubyn Baker-Riley:   19:48
That is a very big question. I mean, we had a missed ablation in 2004. So what I mean by that is they went in to do the ablation, went into the heart and decided that where my problem was, was too close to other important things in there, that they didn't want to play around in there. And what I mean by that is, the Ottawa Heart Institute has an amazing heart arrhythmia lab, and they were getting a new one. And so the decision was made to come back out of my heart without trying in 2004, and waiting for the new lab.  

Anna Jaworski:   20:31
Wow. Well then, that was good, because you mustn't have been having life-threatening arrhythmias or else they would have gone forward anyway.  

Aubyn Baker-Riley:   20:41
Well, they put me on this wonderful drug called amiodarone, and I say that with a huge grain of salt.  

Anna Jaworski:   20:46
Yep. I can understand because I understand there are side effects with that drug.  

Aubyn Baker-Riley:   20:51
Absolutely. It was awful. It was awful.  

Anna Jaworski:   20:54
Yeah,  

Aubyn Baker-Riley:   20:54
Of course, the option was to have a heart attack.  

Anna Jaworski:   20:57
Yeah. Yikes.  

Aubyn Baker-Riley:   21:00
So, you know, that was pretty much my option at that point. And obviously, that comes with its own issues. So amiodarone it was  

Anna Jaworski:   21:12
right.

Aubyn Baker-Riley:   21:13
But it is a really, really awful drug, and I understand that it's necessary a times. But that year was-was a write off in many, many ways for me.  

Anna Jaworski:   21:23
Sure

Aubyn Baker-Riley:   21:24
Lowered energy level, I couldn't go in the sun, and I'm a sun-worshipper.  

Anna Jaworski:   21:29
Oh, my gosh, that's right. I forgot that has photosensitivity.  

Aubyn Baker-Riley:   21:33
Exactly. So it was. Yeah, it was a mess. Anyway, so, I was really glad to get off of that when they did one that actually did something in 2005. And I literally woke up and said to the nurse, "Who's heartbeat is that?"  

Anna Jaworski:   21:52
Awe,  

Aubyn Baker-Riley:   21:53
And she said, "That's your heartbeat," and I said, "No, it can't be," and she said, "What do you mean?" And I said, "That's a regular heartbeat. That is not my heartbeat, because my heartbeat doesn't beat regularly."

HUG Store:   22:08
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HUG Message:   22:42
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, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about 

Anna Jaworski:   23:17
Aubyn,  before the break we were talking with you about you're ablations. But now I want to talk to you about your future and also about your present and living in heart failure. So why don't you start by telling me about the tests that you're waiting for and what the doctors hope to learn from those tests?  

Aubyn Baker-Riley:   23:36
So if we go back a little bit, the two most recent ablations in 2016 and then again in 2018 were, unfortunately unsuccessful. So I am still having the arrhythmias, still having the palpitations, still on heart meds that are very, they're exhausting. They help me so that my heart doesn't overbeat. But by doing so, I have things like I sweat a lot, my hands and feet swell up, I'm exhausted a fair amount of the time, I've gained weight.  

Anna Jaworski:   24:14
Well, I'm sure some of the weight gain is the fluid that you're retaining,  

Aubyn Baker-Riley:   24:18
and also the fact that surprise, surprise when you're waiting for tests and not sure what's going to be happening, you're anxious you're depressed, and in my world, that means I eat, and maybe you don't eat the things I should so,  

Anna Jaworski:   24:33
and you're probably not exercising because you're having these heart palpitations. And so there's this horrible cycle that...

Aubyn Baker-Riley:   24:40
it is, absolutely.  

Anna Jaworski:   24:40
...not helping. 

Aubyn Baker-Riley:   24:41
Absolutely. So at this point, I'm sort of in limbo-land, I call it, which is my least favorite place in the world.  

Anna Jaworski:   24:48
Yes,  

Aubyn Baker-Riley:   24:49
Because limbo-land means, to me, I feel like I can't plan,

Anna Jaworski:   24:55
Yeah,  

Aubyn Baker-Riley:   24:56
because I don't know. I don't know when I don't know what's gonna happen. I don't know if the one test will lead to another test. So we're waiting on an MRI, that's what we're waiting on.  

Anna Jaworski:   25:08
Okay.  

Aubyn Baker-Riley:   25:09
And my understanding is the MRI, actual machine, that we're waiting on has been lent from the Ottawa Heart Institute to another hospital. And so, it isn't even in the building at the moment.

Anna Jaworski:   25:25
Wow.

Aubyn Baker-Riley:   25:25
Yeah,  

Anna Jaworski:   25:25
Now, and it's not possible for you to go to the other building where it is to have the test?  

Aubyn Baker-Riley:   25:32
I guess I need to be more serious before that were to happen. I imagine that I would have to be higher on the list, I guess.  

Anna Jaworski:   25:42
Okay, okay, so in a way, that's a blessing? But it's not a blessing because you're living in limbo.  

Aubyn Baker-Riley:   25:49
Exactly. Exactly, and living in limbo can be very frustrating.  

Anna Jaworski:   25:54
Of course,

Aubyn Baker-Riley:   25:55
it's the 'how do I want to use my energy today?'  

Anna Jaworski:   25:59
Right  

Aubyn Baker-Riley:   26:00
Every day.  

Anna Jaworski:   26:01
Sure.

Aubyn Baker-Riley:   26:01
Some days are better than others. Certainly, some temperatures are better than others. Um, the anxiety, and depression, and the overeating, and those kinds of things. And the not knowing when the test is going to be, what the test is going to entail, anxiety about the test. I mean, I've never had an MRI, so, I don't know what that's like, and I'm claustrophobic, so I don't really want to have one. But, my doctor told me that this was the best way to see what they need to see. So I said okay, and that was six months ago.  

Anna Jaworski:   26:40
Oh, wow. So you still have a ways to go and you don't...

Aubyn Baker-Riley:   26:44
exactly  

Anna Jaworski:   26:44
...know how long you have to go. So I know that Canada has socialized medicine and you know, I'm in the states and we don't. So I have to ask a question about socialized medicine since I don't know much, does this mean that you're on a waiting list and that once the machine is back in your hospital, they'll start ticking off the people from the top of the list to the bottom?  

Aubyn Baker-Riley:   27:06
Correct. 

Anna Jaworski:   27:07
Or is it prioritized by severity of condition?  

Aubyn Baker-Riley:   27:10
A bit of both, as I understand it, a bit of both. So, God forbid, if my condition became acute and I ended up in ER, which is what we call the emergency rooms, I don't know if that's what she called your emergency rooms. But if I ended up in the ER of the hospital that is connected, physically, to the Heart Institute, I potentially could get an MRI faster.  

Anna Jaworski:   27:42
Ah-ha. Okay, now, when we were talking earlier today before we started the show, you told me that you had had some PET test done,  

Aubyn Baker-Riley:   27:53
Mmm-hmm

Anna Jaworski:   27:53
and Aubyn and I had to look it up because we couldn't remember what it meant. But so for those of you who are curious, it's positron emission tomography. And so they did have that test to gain some information. What do they hope to learn with the MRI that they haven't learned with the PET?  

Aubyn Baker-Riley:   28:10
My understanding is now they're starting to look at the idea that it's my Coarc that's causing my problems, and not just my Bicuspid Aortic Valve or my irregular heartbeats and those kinds of things. And when you think about it, that kind of makes sense.  

Anna Jaworski:   28:28
It really does,  

Aubyn Baker-Riley:   28:29
It was done when I was seven, which was...  

Anna Jaworski:   28:32
sure,  

Aubyn Baker-Riley:   28:32
...quite a long time ago. So it is entirely possible that that is the problem and what that means? I am not entirely sure other than I do know, people get heart valves replaced. I do know they have options of what kind of heart valves they use. And beyond that, I am not really sure what other possibilities air out there for me because we haven't had that talk yet.  

Anna Jaworski:   29:01
Right. My son was diagnosed with a Coarctation of the Aorta when he was diagnosed with his heart defect, and his Coarctation was taken care of during his first open-heart surgery. But one of the things that the surgeon said to me was, It's not uncommon for these coarctation to recur, and so we're going to have to keep our eye on that, and I imagine the same is true for you. And if you do have a coarctation that has recurred they may need to fix that.  

Aubyn Baker-Riley:   29:27
Yes,  

Anna Jaworski:   29:28
and that may have nothing to do with your valve, but I was surprised to learn you had Bicuspid Aortic Valve for such a long time and that they haven't ever done any kind of valve surgery on you. There are so many options now there's the Ross procedure, where they take the pulmonary valve and a switch out your aortic valve with your pulmonary valve so it's native tissue is that there's less likelihood for anything to go wrong with it, and then they replace the pulmonary valve, which doesn't have to work as hard as the aortic valve, with either a pig valve or cow valve or a mechanical valve. And so I expected you to tell me that you were having valve surgery. I was really surprised when that wasn't the case. So what is your hope for your future?  

Aubyn Baker-Riley:   30:10
Well, firstly, to answer the valve question, my regurge is mild to moderate. So it's not severe enough for them to...  

Anna Jaworski:   30:20
mess with it.

Aubyn Baker-Riley:   30:20
I'm sort of in that-I'm sort of in that middle range. So I'm not severe enough to look at replacement at this time. That's why that's that on that.  

Anna Jaworski:   30:30
That's really good.  

Aubyn Baker-Riley:   30:30
That's why that's not on it. As for my age, my hopes for the future. I mean, obviously I hope that I get some kind of surgery, some kind of procedure, some kind of medication, some magic pill, wouldn't that be nice, that, um... 

Anna Jaworski:   30:46
That would be nice.

Aubyn Baker-Riley:   30:47
that helps me feel better, that allows me to have a better quality of life. My husband is going to be retiring in three years, and our hope is to travel North America, not necessarily outside of North America, but still, to do that, I would like to feel better and be able to do more, have more energy, live a happy retirement, that would be my hope.  

Anna Jaworski:   31:12
Well, what advice do you have for people who, like you, are living with heart failure, have the low energy, have the edema? Have you found any tips or tricks to help you improve your quality of life?  

Aubyn Baker-Riley:   31:25
There are a few, actually, and one of them is, for my sake, I am a very good advocate, and I feel that I need to be a very good advocate, not only for myself, but for my family in other situations as well. But one of the things I've learned over the past 15 years is if I don't ask the questions, then I'm not going to get the answers.  

Anna Jaworski:   31:47
That's so true.  

Aubyn Baker-Riley:   31:48
So I ask a lot of questions. I come with my notebook, I am the first person to say to my doc, "Sit down. This isn't gonna be a five-minute conversation. You know me." Um, you know, and I phone my nurse practitioner if I have comments, questions, concerns, I phone the nurse practitioner. I leave her a message, she calls me back. I've been involved and am involved in some organizations, up here in Canada, that are to do with heart failure, to do with CHD patients. And I've learned a lot from a lot of other patients and a lot of other people who have CHD patients in their lives, and that's been priceless to me. And the other, for me, really is use my energy wisely. So, I don't know if you've ever heard of the spoon theory, but quickly; basically, what it says is you have so many spoons in a day, what do you want to use the spoons on?  

Anna Jaworski:   32:53
Okay.  

Aubyn Baker-Riley:   32:54
And so certain things, like groceries they take a lot of energy for me,  

Anna Jaworski:   32:58
Yes!

Aubyn Baker-Riley:   32:59
because walking around the grocery store is tiring.  

Anna Jaworski:   33:02
Sure,  

Aubyn Baker-Riley:   33:03
So we order our groceries online, I pick them up at the grocery store, they put them in my SUV and I come back home with my groceries having been done by someone els,e and I bring them home. And then my son puts them away, or at least brings them in the house, and then helps me put them away. It saves spoons for me.  

Anna Jaworski:   33:28
Yeah, brilliant.  

Aubyn Baker-Riley:   33:30
It was one of my biggest spoon wasters. We need food. You need to eat. You need a grocery shop. We don't need to go during the weekend like everybody else does because I am at home. But at the same time, do I really want to waste my spoons on doing groceries?  

Anna Jaworski:   33:46
Yeah, when it's so easy to just do it online. And I know here in Texas, we have a grocery store chain called HEB, and HEB up charges I think it's really nominal, two or 3%, and if you're trying to save spoons, that two or 3% is totally worth it.  

Aubyn Baker-Riley:   34:03
Absolutely. And I think for me. It is super important for me to get out of the house when I can,  

Anna Jaworski:   34:10
Sure,  

Aubyn Baker-Riley:   34:11
when the weather is nice. I mean, we do have cold, long winters up here and so it's important for me to get out and see people and go see my neighbor and go see friends and do those kinds of things and save my spoons for those good things.  

Aubyn Baker-Riley:   34:27
I love it. That's brilliant advice. I'm so glad that you came on the program Aubyn. Thank you so much for sharing your stories with us today.  

Aubyn Baker-Riley:   34:37
You're very welcome.  

Aubyn Baker-Riley:   34:38
Well, 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 the program, just head on over to Patreon, that's www.patreon -p a t r e o n.com/hearttoheart, and you can learn more and join our team. And that concludes this episode of Heart to Heart with Anna. Thanks for listening today and remember, my friends, you are not alone.

Anna Jaworski:   35:10
Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.