Heart to Heart with Anna

Panel Discussion on Labels or Terms Used in the Heart Community

March 11, 2020 Season 15 Episode 10
Heart to Heart with Anna
Panel Discussion on Labels or Terms Used in the Heart Community
Chapters
Heart to Heart with Anna
Panel Discussion on Labels or Terms Used in the Heart Community
Mar 11, 2020 Season 15 Episode 10
Aubyn Riley-Baker, Felisha Jarschke, Jen Hart Mulder, Kathy Ware, and Laura Ryan

This panel discussion includes four adults who were born with congenital heart defects and one parent of a twin daughter who was born with a heart defect. Host, Anna Jaworski, is the mother of an adult son who was born with a congenital heart defect. Together, these six women talk about some of the different terms and labels that are commonly used in the congenital heart defect community.

How do terms and labels affect those born with congenital heart defects? Do terms define a person? Do labels hurt? Can labels cause bullying? What are the pros and cons of using abbreviations and labels when referring to people who were born with congenital heart defects?

Panelists include return Guests Laura Ryan, Kathy Ware, Aubyn Baker-Riley and new "Heart to Heart with Anna" Guests Jen Hart Mulder and Felisha Jarschke. Tune in to hear how these panelists refer to themselves, refer to others in the heart community, and what terms are considered acceptable and which terms or labels are disliked by panelists.

Other "Heart to Heart with Anna" episodes mentioned in this podcast:

Laura Ryan's podcast:
Heart Warrior Mom Raising Children to Adulthood
Living with a Bi-directional Glenn Heart

Laura Ryan and Kathy Ware's podcast:
A Heart Warrior’s Early Onset Menopause

Kathy Ware's podcast:
From Learning Disabled to College Professor

Aubyn Baker-Riley's podcast:
When a Heart Warrior is Living in Heart Failure

Jen Hart Mulder's podcast:
Hartfelt: Living Life with Congenital Heart Disease

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If you enjoy this program and would like to be a Patron, please check out our Patreon page 

Show Notes Transcript

This panel discussion includes four adults who were born with congenital heart defects and one parent of a twin daughter who was born with a heart defect. Host, Anna Jaworski, is the mother of an adult son who was born with a congenital heart defect. Together, these six women talk about some of the different terms and labels that are commonly used in the congenital heart defect community.

How do terms and labels affect those born with congenital heart defects? Do terms define a person? Do labels hurt? Can labels cause bullying? What are the pros and cons of using abbreviations and labels when referring to people who were born with congenital heart defects?

Panelists include return Guests Laura Ryan, Kathy Ware, Aubyn Baker-Riley and new "Heart to Heart with Anna" Guests Jen Hart Mulder and Felisha Jarschke. Tune in to hear how these panelists refer to themselves, refer to others in the heart community, and what terms are considered acceptable and which terms or labels are disliked by panelists.

Other "Heart to Heart with Anna" episodes mentioned in this podcast:

Laura Ryan's podcast:
Heart Warrior Mom Raising Children to Adulthood
Living with a Bi-directional Glenn Heart

Laura Ryan and Kathy Ware's podcast:
A Heart Warrior’s Early Onset Menopause

Kathy Ware's podcast:
From Learning Disabled to College Professor

Aubyn Baker-Riley's podcast:
When a Heart Warrior is Living in Heart Failure

Jen Hart Mulder's podcast:
Hartfelt: Living Life with Congenital Heart Disease

Please take a moment to follow us on your preferred social media platforms:

Apple Podcasts

Facebook 

YouTube 

Instagram 

If you enjoy this program and would like to be a Patron, please check out our Patreon page 

Support the show (https://www.patreon.com/HearttoHeart)

Aubyn:
00:00
I think it's just a quick way to say, Oh, you're one of us.  
Anna:
00:10
Welcome to Heart to Heart with Anna, I am Anna Jaworski and the host of your program. I'm happy you're here with us today. Today we're going to have another panel discussion, and our topic is Labels or Terms Used in the Congenital Heart Defect Community. In an effort to better understand some of the terms that are casually used in the Heart Community, I've invited a panel of Heart Community members to have a friendly discussion. My hope that we'll have a healthy discussion about terms or labels used in the heart community so that we can learn how others feel about those terms. I'm hopeful that once we learn how others feel about certain terms or labels, it will make us more sensitive to the feelings of members of the Heart Community.  
Anna:
00:49
With me today are, Laura Ryan, who is an adult who is almost 50 years old and was born with a single left ventricle, double inlet left ventricle and congenitally corrected transposition of the great arteries. She is 29 years post-bidirectional Glenn Shunt, and she has not had the Fontan. Many of you may remember Laura from the episode she was on entitled "Heart Warrior. Mom Raising Children to Adulthood" where she was the Guest and Rita Scoggins was the Guest Host or "A Heart Warrior's Early Onset Menopause," where Laura was the Guest Host and Kathy Ware was our Guest. So welcome back to Heart to Heart with Anna. Laura.
Laura:
01:26
Thank you. It's great being here. I'm happy to be here. And thanks for having me on again.
Anna:
01:33
Well, I'm excited to have you on as well as one of your dear friends, Kathy Ware. Kathy was born March 19, 1974. She has had four heart surgeries, a Potts shunt in 1974, a central shunt in 1980, a reconstruction of the Potts shunt, which was also a modified B-T shunt in 1989 and a classic Glenn shunt in 1989. My listeners may remember Kathy from the show where she was on with Laura Ryan as a Guest Host was entitled "A Heart Warrior's Early Onset Menopause." Welcome back to Heart to Heart with Anna," Kathy.
Kathy:
02:08
Thank you for having me back.
Anna:
02:10
Well, this is a reunion of sorts because we also have Aubyn Baker-Riley, who was born in 1963. She wasn't operated on until she was seven years old. She was sickly as a child -- thin, and frail-looking. She was proclaimed fixed when she had a coarctation repaired at age seven, but at 39 years of age she started having fainting spells. She knows from experience that those born with heart defects require lifelong care. And my loyal listeners may remember Aubyn from Season14 when she was on a program entitled "When A Heart Warrior Is Living in Heart Failure." Welcome back to Heart to Heart with Anna," Aubyn.
Aubyn:
02:47
Thank you, Anna, I'm happy to be here.
Anna:
02:50
Well, I'm happy to have you, too, and one of your friends! And this is her first time on the program. So I'm excited to have Jennifer Hart Mulder on the program. She's 37 years old and was born with severe, complex congenital heart disease. She has a rare version of tetralogy of Fallot with pulmonary artery atresia, absent pulmonary artery and major, aorto pulmonary collateral arteries or MAPCAs. Jen is also a new podcaster. Her podcast is about her congenital heart defect and is entitled "Hartfelt: Living Life with Congenital Heart Disease." Welcome to Heart to Heart with Anna," Jen.
Jen:
03:27
Thank you so much. And I'm really happy to be here.
Anna:
03:30
Well, I am happy to have you and one other newbie! We have Felisha Jarschke is a Heart Mom. Her daughter Ava is a twin. She was born with tricuspid atresia, ventricular septal defect and an atrial septal defect. Also known altogether as hypoplastic right heart syndrome. Ava's twin is heart-healthy. Welcome to Heart to Heart with Anna," Felisha.  
Felisha:
03:54
I'm glad to join you guys. Thanks for having me.
Anna:
03:57
Well, I am so excited! I'm going to start with you, Laura, because it was through talking with you that we decided to have this program. And I think it's unusual for us to talk about terms in the congenital heart defect community. But I wanted to start by asking you, Laura, how do you feel about the term "Heart Warrior"? And keep in mind that I used that term in both of the shows that you've been on previously.
Laura:
04:23
Yeah, I know you did. And while I won't say anything when it's used, I won't use it myself. I don't particularly care for it because my heart defect does not label me. It doesn't define me. I'm much more than that. I'm a mother. I'm a wife. I'm a chauffeur. I volunteer at the animal shelter. I do so much more. And I don't even think about my heart defect most days. I can't run as fast as other people. But then again, there are people that are heart-healthy that can't run a marathon either 
Anna:
05:05
Sure  
Laura:
05:06
because their endurance isn't set up for that. They're conditioned to do other things. So I don't even think about the heart defect in that way. I don't think of myself as a warrior or as a survivor, even though you didn't ask that or a hero. I'm me,
Anna:
05:27
Um hm. Right. Yeah. That's exactly how my son, Alex, felt -- which you know, because that's what he wrote about for his essay in the book that I'm going to be publishing. That's what started this whole idea of putting this show together, right, Laura?
Laura:
05:41
Right. We were talking about Alex and the name of your book.
Anna:
05:45
Mmm hmm. I know "The Heart of a Heart Warrior" -- which you and Alex do not like!
Laura:
05:53
Right! 
Anna:
05:54
Okay, well, let me turn my attention to Aubyn, and I'm so happy that you're back on the program, Aubyn! Tell me how you feel about the term "Heart Survivor."
Aubyn:
06:06
Well, strangely enough, I agree with what Laura was saying, but about "Heart Survivor," not "Heart Warrior." "Heart Survivor," to me, makes me think that I am merely surviving. And I don't like the concept that I am merely surviving,  
Anna:
06:26
Interesting  
Aubyn:
06:27
and so to me, "Heart Warrior" makes me think of someone fighting someone. Someone continually fighting to be "normal," whatever that might be. To not have the label define who I am. It is a part of who I am, as Laura said, but it is not all of who I am. And so, interestingly enough, same concepts, different wording.
Anna:
06:58
Interesting. So you don't mind the term "Heart Warrior" because you feel like this is the good fight that you're fighting. But you don't like the term "Heart Survivor" because you feel like that's limiting.  
Aubyn:
07:10
It seems like a stigma. "Heart Survivor" makes me think of someone like a, God forbid, a cancer survivor. It seems to me, is someone who has gone through an acute thing and then has come to the other side. Whereas we all know with our heart defects or heart disease, it is a lifelong thing. So it's not something that I'm surviving. It's something that I'm thriving with or attempting to thrive with. So fighting.
Anna:
07:46
Oh my gosh. So that reminds me of another term and I didn't even put that in today's show. But I had Beth Greenaway on my show last season, and she called herself a "CHD Thriver" for the very reason that you just said because she feels like she's thriving with her congenital heart defect, so  
Aubyn:
08:08
I like that one! I do like that one,  
Anna:
08:10
Yeah, yeah, I like that one, too. And that's really cool that she came up with that. Okay, well, Felisha, the only other Heart Mom, aside from me, who's on the panel today! Tell me how you feel about the term "Heart Warrior," especially regarding Ava, and how you think that her sister might feel about that term.
Felisha:
08:32
We actually don't use it in our home at all. It's kind of hard, especially with kids -- we're trying to give her a normal life. I mean, we have extra appointments. We have extra things. She's aware that she's got a different heart, but we try to keep it as normal as we can and especially with the twins. It's hard because we don't want her to feel different. We don't want her to feel out of place. And one of the big things, especially before she was born, that my husband and I talked with a lot of people about how they felt with their conditions and how they kind of found that labeling it almost makes it define them like, "This is my daughter Ariana," which is her twin. And then "This is our Heart Warrior" because it really just comes across as such a definition of who she is as a person. And our big thing was is that we don't want her to feel like her CHD is who she is. So we really don't use any labeling. I don't want her to grow up feeling that this is -- I mean, even though it's a big part of her life, we don't want it to be her life
H2HwMichael:
09:50
"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. stripe for 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 talked with people from around the world who have experienced those most difficult moments.  
Home2night4ever:
10:26
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. 
Rejoiner:
11:04
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:
11:22
Kathy, how do you feel about the term "Heart Hero"? That is something that I've heard a lot more in the last, I don't know, five years or so? And I'm even seeing kids who get capes. And I wonder how do you feel about that?
Kathy:
11:39
I feel that it's kind of awkward. I'm very much like Laura. I was raised without labels. I knew I was different. I knew I had this heart defect. I thought I was quite unique because I had it. But I'm me. Everybody has limitations. And mine just happened to be -- I'm not going to go for a run around the house. I tend to say, 'Tricuspid atresia has shaped my life. But I refused to let it define me.' And I have no trouble with people knowing that about me. But it's quite an honor to me when people say, "Oh, we forgot,"
Anna:
12:17
(soft laughter)
Kathy:
12:17
I'm like, "Thank you! I've accomplished my job here."
Anna:
12:22
Wow. I love that. Okay, Jen, how do you feel about the term "Zipper Sister"? That's another one that seems to be gaining in popularity. And there's even a Zipper Sister group.  
Jen:
12:34
So I actually don't have a problem with the term "Zipper Sister." I think that it's a nice way of calling the community of women who have CHD, but my concern with it Is that not everybody who has CHD has a zipper or a scar.
Anna:
12:48
Ah, that's so true.
Jen:
12:50
I actually have never had open-heart surgery for my defects, and I've only ever had five ICD surgeries. So it's different for me, as opposed as somebody else who's had major open-heart surgery.  
Anna:
13:04
Wow, I've never even really thought of that. But yeah, one of my dear friends and Listeners, Sally Pennington, is another one. She has ccTGA. She's never had surgery. She has no zipper, but I think she's a Zipper Sister, even though she doesn't have a visible zipper. So I think that's a really, really good point. What about the people who are living with congenital heart defects who haven't had an open-heart surgery? That's really interesting. But you don't mind the term, you're okay with the term?  
Jen:
13:34
Yeah, I'm good with it.
Anna:
13:35
I think that's what's interesting. When I use the term "Heart Warrior," like I did with Laura, and I never even knew until we start talking about this that she really didn't like the term, it was kind of a shorthand way of letting people know that I was talking to somebody who was born with a heart defect, and it wasn't meant in a derogatory way. It didn't mean that I felt that that defined Laura. But I do find that now there are some people who get upset with that term or don't want that term used. So that's why I'm having this conversation. I just figured it would be an interesting way for us to talk about some of these terms that people are using very casually and like me -- I used it without even thinking that I might upset somebody. So I'm trying to raise awareness. So I've covered some of the most common terms that we've used so far. But I want to talk to you all about the emotion that does seem to be tied up with some of these terms. Why do you all think that some of these terms illicit a more emotional response than others? Aubyn
Aubyn:
14:38
Thank you. I think with any label there comes emotion whether it be a label for your heart defect or disease, whether it be a label, as with my son, who has a learning disability. I mean any kind of label gives you some emotion with it, and it's because no one likes labels. No one likes to be labeled anything specifically. We all like to be who we are, as we've all said, regardless of whatever we have that may make us part of a different community. So I think it's just innate that we react to some labels more so than others.
Anna:
15:20
Yeah, yeah, I would agree with that, definitely. Although I think some people like certain labels, so I'm kind of curious what other people think. So, Felisha, I'm going let you talk now.
Felisha:
15:32
Having a child with severe CHD is... it's a hard experience, and I can completely understand why people do use the terms. It's not like I'm completely against it. It's just we choose not to use it, and I feel, too, that sometimes by labeling it, it does evoke a lot of emotion because it's giving a name to something that on the surface we really can't see, and we really can't identify it.
Anna:
16:05
Yeah. Yeah, Jen, what would you like to add to this?  
Jen:
16:10
I was just going to say that. I think in some cases we feel that this label defines us, and it may, or it may not. I mean, I have CHD, but I have a lot of other things, too, or I am a lot of other things, too. But unlike some people, my CHD affects me every single day, and I don't have the luxury of forgetting about it. And so for me to use a label and I personally use "CHD Fighter" because I am continually fighting every day. I just think that some people are so invested in their CHD because they're fighting for their life! That that's where the emotion comes from.  
Anna:
16:48
Yeah, I agree. 100%. I think it's a totally different experience for people, like you, who are having to fight every single day versus people like my son who (knock on wood) is in a really good place right now. He doesn't have to deal with oxygen. He's not having to deal with taking an excessive (amount of) medications or anything like that. So I think it's easier for him to put it on the back burner. But for some people, you can't. You cannot put it on the back burner. Laura, what do you think about that
Laura:
17:17
For me, I think a lot of times with labels, not so much for the adults, with the adults. I agree with what Jennifer said, because for her it's an everyday thing and she can't forget about it. How she explained it. For me, I can forget about mine because, like Alex, I'm in a good place. I think with parents that are using it for their children. Their children need to be the ones who decide as they get older, because they're putting these labels on their kids and they're setting them up to be bullied, to be made fun of, to not be accepted because they're going out front of the class, handing out notices to all the parents and saying, "My child's a Heart Warrior." And I just think sometimes it gets a little excessive, and then it's setting the child up to think that that is all that there is to them.  
Anna:
18:20
Of course,  yeah
Laura:
18:21
Whereas there so much more to the child. I was raised just like my brother and sister. Yeah, I went to more doctor's appointments, but I climbed trees. I did everything my brother and sister did, and more. I was on the bowling team. I was on the volleyball team. I did whatever I wanted as far as sports. And my parents encouraged that. And there was no "Heart Warrior"/"Heart Survivor" back then.
Anna:
18:46
I don't remember us using terms like that 20 years ago, 25 years ago. This seems to be something that's more recent. Kathy, what do you think about that?
Kathy:
18:55
I agree with Laura and I was raised on the family farm and I was expected to pull my weight at whatever weight I could pull. I wasn't like my brother who is this six-foot big guy who could help round up animals and help hold them for doctoring. But if I was in the house, I was expected to help with getting a meal. If I was out in the barn, I was expected to be pulling up the meds in the syringes and getting things ready to be handed off. I was expected to do what I could do. Yes, my heart defect in some ways affects me every day in the sense that I have to plan my day in certain ways of making sure that I get somewhere on time. When I was in college, I had to plan to make sure I had enough time to walk between this building and that building. But that part of me is, at this point, so much part of who I am that I don't even think about, 'Oh, I have to do this because of my CHD.' It's just, 'I just have to do this.'
Anna:
19:58
Right, right. And it would be no different if you had asthma or if you had some other condition that just made you aware that you would have to allow yourself a little bit more time or whatever the situation would require.  
HUG Store:
20:13
Hi, my name is Jamie Alcroft 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 and 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 the Globe mug, both of which are available at the HUG Podcast Network online store or visit heartsunitetheglobe.org.
Disclaimer:
20:43
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in a podcast are not those of Hearts Unite the Globe but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.
HUG Message:
21:05
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 CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.
Anna:
21:41
So in this segment, I want to open the floor to whoever feel strongly about a certain term or label, and I want to start with the term "congenital heart defect" versus "congenital heart disease." Jennifer  
Jen:
21:55
So you and I have discussed this briefly, and I think that the 'defect' versus 'disease' is very regional. In Canada, it's very, very common for it to be "congenital heart disease." And I've noticed in the United States it's much more common to have "congenital heart defect." So I think there is a play in terms of where you are.
Anna:
22:18
Yeah, I think so, too. I've definitely noticed that myself. Aubyn, have you experienced the same thing?  
Aubyn:
22:25
I haven't really thought about it as regional, to be honest. I do think it can be age-significant. What I mean by that is, I remember when I was a child and that was a long time ago. My parents would say that I had a congenital heart defect. And I saw that as meaning that I was fixed.
Anna:
22:51
Right, 
Aubyn:
22:53
Right?
Anna:
00:00
Right.  
Aubyn:
22:53
If you look up the word, a "defect" can be fixed. Something can make it better. And I look at it now as a "disease," I guess because I'm older and I realized -- when I started getting unwell late in my thirties -- that it wasn't just a one-time thing or a have-to-watch-Aubyn-closely until I turned 18. It became a part of my life regularly. And so to me, that makes me think it's a "disease," like diabetes, like other diseases. It's no longer something that can be fixed.
Anna:
23:36
Interesting. Okay, Kathy, what do you think about this "congenital heart defect" versus "congenital heart disease"?
Kathy:
23:44
I'm going to come in with my biology background, and to me, it's a "defect" because it is structural. For most of us, it's a structural thing. Is a structural defect that happened in the womb that we had no control over. Whereas in my head, I think of "disease" kind of like something, (and I don't mean 'control over' like you had control over whether you got diabetes Type I or Type II), but that this isn't something that we can correct, so to speak, by going out and taking a pill and exercising and eating right. It's a structural defect that, unless they drop a new heart in me, it's always going to be there.
Anna:
24:35
Interesting. Laura, what do you think about that?
Laura:
24:39
Okay. For me, I have to comment on what I think. Jennifer said first: regional. My cardiologist is Canadian, and he calls it "disease." My old cardiologist, when I lived in New York was from New York, and he called it "defect." So I agree with the regional thing.
Anna:
25:03
Yeah, yeah, that seems to confirm or validate what it is that Jen said.
Laura:
25:07
Now, as far as I agree with also what Kathy said... yes, to me, defect makes more sense because it's structural; it's something we're born with. It's a defect of the heart muscle. But the way both doctors explained it to me was the "defect" goes hand-in-hand with "disease" because the defect leads to other problems that could be considered disease - like the arrhythmia, the valve issues needing the pacemaker, which is the arrhythmias, and things like that. That are not necessarily there when you were born, they develop as you get older. So that's the disease.
Anna:
00:00
Right.
Laura:
25:56
That happens because of the defect. So they kind of go hand-in-hand 
Anna:
26:00
Right. Yeah, I totally agree. Aubyn, did you want to add something else?  
Aubyn:
26:06
No, not really. Other than to say that I've never really thought about it that way before - in the way that Laura and Kathy were both talking about. And it makes sense to me that it may actually be both. It may actually be that the defect causes the disease issues, which sort of is age-specific. But also the regional piece of it is really interesting to me - that in one place they would call it a "defect" and another, they would call it a "disease" and not to get any political bent in here in any way but I wonder how that adds to or subtracts from the thought that people with CHD can get disability, for example.
Anna:
26:52
Oh, how interesting. Oh my gosh! I didn't even think of it that way.
Aubyn:
26:57
Can or can't. Yeah, can or can't
Anna:
27:00
Right - can or cannot. Yeah, that's very interesting. Wow, I feel like we've kind of expanded our thinking on "congenital heart disease" versus "congenital heart defect," and it's not like one term is better or worse than the other. I think it's just like Jen was saying, perhaps descriptive of where you're from. I wonder if people in Europe tend to use one particular term. We're all in North America, but it's interesting because as I meet people all over the world, I do notice that some people tend to use the term  "disease," while others tend to use the term "defect. "But I have to agree with you all that even if you start out using the term "defect" that we do tend to see other disease processes that come into play. So using the term "congenital heart disease" may actually be a more appropriate description of what it is that you all are dealing with. Laura, did you want to say something about that?  
Laura:
28:01
Yeah. When I was little, I remember we didn't call it "defect" or "disease." It was "heart condition."  
Anna:
28:09
Ah, yeah.  
Laura:
28:11
I don't hear that anymore at all, but it was always, 'You have a heart condition. You have a heart condition.'
Anna:
28:17
Yeah. Yeah.  
Laura:
28:18
I don't know if anybody else ever heard that or used that.
Anna:
28:22
It looks like Kathy has something to add to that.
Laura:
28:25
Yeah, but that's when I was little. That's all I heard.
Jen:
28:30
Right. Kathy? Was it the same for you?
Kathy:
28:33
Yes. I was told I had a "heart condition." There was no "disease," "defect" or otherwise. It was just, 'You have a heart condition.'
Anna:
28:41
Yeah. Yeah. What about you, Jennifer?
Jen:
28:44
I actually still use that term. (soft giggle)
Anna:
28:48
Oh, do you really? Okay. Yeah.
Jen:
28:51
 Yeah. If people ask me, I say, "Oh, yeah, I have a heart condition."
Anna:
28:52
Okay, Yeah, and I don't see anything wrong with that. That seems like an appropriate term to use, but one of the other terms that seems to be happening a lot in my circles - But I will preface this by saying my son was born with a single ventricle heart and initially was diagnosed with HLHS, so he had the Fontan procedure - and so a lot of the people that I'm connected to are parents of children with the Fontan or adult survivors who have had the Fontan. And so "Fontaner" seems to be a term that's thrown out a lot. Or I'll hear "ToFer" or "HLHSer." How do you all feel about people using terms like that where it's a term that's either a procedure or it's a term that's used as a diagnosis? Felicia, I'll start with you.
Felisha:
29:41
I mean, honestly, it's just another label. It's still other things that we don't use just because it seems to be a definition that that surgery is what defines either their heart condition or would define her as a person. My daughter didn't have the Fontan. We actually had an alternate surgery done, but I don't know that I would reference her by her surgery.
Anna:
30:07
Okay, Jen, what do you think of that? 
Laura:
30:10
I think it's a people-first language that is ingrained in me. And that is, I wouldn't say, 'that Down Syndrome person over there.' I would say 'that person with Down Syndrome.' So it's a people-first language.
Anna:
30:22
Very good. Very good. That's interesting. Laura, what about you?
Laura:
30:29
For me again, it's too defining. It's like to say, "the Fontaner" - it's like what Jennifer just said. Like she would say, "That person with Down Syndrome," you wouldn't say. "Oh, that Fontaner" or "I'm a Fontaner." No. "I had the Fontan Surgery."
Anna:
30:48
But what about when you're talking with people and they've had the Fontan Procedure and they're dealing with liver issues and they're in a group in a heart community. They're talking to other people with heart defects, and they're using that as a shorthand means of identifying a subset.
Laura:
31:05
I still don't like it. I mean, I wouldn't say anything. I would let it go. I'm not going to, like, jump down anybody's throat about it, but it makes me cringe inside when I hear people use any of these terms that we're talking about.
Anna:
31:19
Wow. OK, what about you, Kathy?
Kathy:
31:23
I'm willing to say that within the Heart Community that if they want to say that I'm a "TAer" (i.e. tricuspid atresia), okay, fine. But I would say, Laura and I both truly enjoy pointing out in heart groups that we haven't had the Fontan. And I'm not saying that I want to be called the "non-Fontaner." It just floors, the single-ventricle people that there are these handful of adults walking around and having a - I would say "fairly normal " (I mean - what is normal? ) but they're enjoying their life. I'm not saying they're hating the world and its quite shocking to some of them. That's all.
Laura:
32:08
And we're living a full life, basically.
Anna:
32:12
Yeah. Right. Yeah. Aubyn?
Aubyn:
32:16
I think the only time I've ever heard those kind of sub-labels, as you call it, are within groups of "Heart Patients,"/"Heart Warriors," whatever we want to call ourselves. And I think it's a way, honestly, to sort of demarcate 'Are these the people that have had the tru-da(unintelligible)' I can't even say it. "The tetralogy of Fallot" Like, see? For me, it would be great to call it those little acronyms because I screw up all the names all the time. That's great when people use those little things for me. But I also think that it is a way just to quickly define smaller groups of people. I also would like to say - much like Jen said about the "Zipper Sister" - I also don't have a traditional zipper. My open-heart surgery went across ways, so I don't have a traditional open-heart up-and-down zipper; mine goes below my breast line.
Anna:
33:20
But you still have a "zipper"
Aubyn:
33:21
But it still is a "zipper." Yes, that is true. And I was told that as well by the Zipper Sisters, I think it's just a quick way to say, 'Oh, you're one of us.'
Anna:
33:31
Yeah. Yeah. So I'm so glad that I could have five other people in the room with me and we could have this discussion about all these different terms. Man, we covered a lot of different terms and some I hadn't even thought about before we started talking. And we did it in a very nice way. I don't think anyone has felt threatened or judged by their feelings. And yet, I think I have a much better understanding now of why some people might take offense to certain terms. And I hope all of you feel the same way. And I hope everybody who's listening feels the same way and that we can all just treat each other with kindness. Because whether you like a term or don't like a term, I think that most people use it as a shorthand way of communicating with each other in our community. I hope that this will make us all a little bit more sensitive to one another and so now, I'm going to go ahead and thank everybody for being on the program. Thank you, Laura, so much, for first of all, helping me come up with a concept for this program. But then also for helping me find such wonderful Guests to come on the program.
Laura:
34:38
You're welcome. It was my pleasure.
Anna:
34:41
It was a lot of fun. Aubyn, it was so good to have you back on the show. Thank you. And thank you for introducing me to Jen. I feel like I have a new friend.
Aubyn:
34:51
You are very welcome. And I'm glad that that worked out the way it did.
Anna:
34:55
Yeah, me too. Jen. It's been so great meeting you and I've enjoyed listening to your podcast. I hope everybody else will take a few minutes and listen to your podcast. I'll be putting the link to your podcast in my Show Notes.
Jen:
35:09
Awesome. Thank you so much for having me. I hope I can come back again.
Anna:
35:12
Oh, absolutely. This has been so much fun! Kathy, it's been great talking to you. It's been a long time since I talked to you.
Kathy:
35:21
Oh, it's good to be back and thanks for having me!
Anna:
35:24
And Felicia! It's always great to meet another Heart Mom, so thank you so much for coming on the program today. 
Felisha:
35:31
Thank you. It was such a pleasure talking with all of you ladies. I appreciate it.
Anna:
35:35
That's all for this week's episode. Our episodes are archived on YouTube, Apple podcasts. iHeartRadio, Buzzsprout, Spreaker, Stitcher... pretty much wherever podcasts are being listened to, you can listen to "Heart to Heart with Anna" at your convenience. If you did enjoy listening to you today's episode, please consider becoming a patron. Just go to www.patreon.com/hearttoheart and pledge a monthly amount to support our program. We really appreciate your support. And remember, my friends, you are not alone.
Conclusion:
36:09
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.
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