Care, Hope, Discover 2019 Conference: A Congenital Heart Defect Conference

In this episode of Heart to Heart with Anna, returning Guest, Mary Kay Klein talks with Anna about an upcoming conference for the congenital heart defect community. Care, Hope, Discover 2019: A Congenital Heart Defect Conference will occur on October 26, 2019, in Waltham, Massachusetts at the Hilton Garden Inn in Waltham (near Boston).

This one-day educational conference is for CHD patients, family, friends, and caregivers. There will be an amazing group of speakers, medical providers and an inspiring panel of adults who are either living with CHD or a parent of a CHD patient. The conference begins at 9:00 a.m. (registration opens at 8 a.m.) and runs until 4:30 p.m. A Saturday Post-Conference Networking event is included with registration and begins at 5:00 p.m.

Featured speakers include Drs. Ram Emani, Mike Landzberg, Doug Mah, Fred Wu, Boston Children's Hospital; Ami Bhatt, Mass General; Mark Zilberman, Tufts Medical Center; and Paul Thayer, Boston University.

Use this link for more information and registration.

ACHA is a co-sponsor of this event along with It's My Heart New England, Adults Living with CHD of MA and The Children's Heart Foundation - New England Chapter.


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Transcript

Mary Kay Klein :   0:00
I think, based on feedback we've had in the past, and my own experience, the most important thing is to know that we're not alone and that there is a magnificent, supportive community that we can become part of and network with that will help us get through whatever trials and tribulations there are.

Anna Jaworski:   0:26
Welcome to "Heart to Heart with Anna," I am Anna Jaworski and the host of your program. We are in our 14th season, and we're very happy you are here with us today. I'm very excited about today's show to feature a returning guest, and dear friend, Mary Kay Klein. Today's show is entitled "Care, Hope, Discover 2019 Conference." Mary Kay Klein is married to Ted Klein, and is the mother of three children, John, Kevin, and Karen and the grandmother of three grandchildren. Karen was born with a congenital heart defect, which spurred Mary Kay and Ted on to becoming strong advocates in the congenital heart defect community. Karen, her family, and some close friends were founders of the Adult Congenital Heart Association. Since Karen's passing Mary Kay and Ted have worked tirelessly to continue Karen's work, advocating for families with congenital heart defects. One of the ways they have done so is with a conference called Care, Hope, Discover and that's a conference for everyone in the congenital heart defect community. It's held outside Boston, Massachusetts, and I'm so happy to welcome my friend Mary Kay Klein. Welcome to "Heart to Heart with Anna," Mary Kay.

Mary Kay Klein :   1:38
I'm so glad to be back here with you. Thank you for having me, and I'm excited about this conference and excited to tell you about it.

Anna Jaworski:   1:45
I know me, too, And what really makes me excited, Mary Kay is that I get to go.

Mary Kay Klein :   1:50
I'm glad.

Anna Jaworski:   1:51
I know I love this conference! So let's start by talking about this conference. I think I've been to four of the conferences, but I know that there have been more than that. How many conferences have there been?

Mary Kay Klein :   2:03
Well, we started doing local conferences in 2007 not too long after Karen died, and we've had different types of conferences. We've had some all-day conferences for adults living with congenital heart defects in their families. We've had some evening conferences that have focused on special topics like, how to deal with living with a heart defect or nutrition or exercise or spiritual questions that come up for people living with CHDs. And then, about three or four years ago Anna, Mary Geist came to me, she's the head of "It's My Heart, New England," and she suggested that we work together. She had come to a couple of programs for adults, and she wanted to work together on an all-day conference that would be for families with small children, for teenagers, for adults and for caregivers. So, the last three conferences I've worked on have been of that form for everybody, and it's been wonderful to bring everybody in the heart defect community together. Especially, I think, it's been helpful for parents to meet adults who've lived with heart defects for many years, have survived, have worked out their coping strategies and are doing well.

Anna Jaworski:   3:20
Oh, I agree, and I guess I've been to the last three conferences, but I think I went to one of the first ones that you had as well. I think I went to the very first one you had after Karen passed.

Mary Kay Klein :   3:31
I believe you did.

Anna Jaworski:   3:32
I've seen a changing over the years, which is really cool. You've really worked to try and stay up on what needs our heart community has, and I love how you're bringing all of these different organizations together. Just like the It's My Heart organization. What other organizations are involved in this year's conference?

Mary Kay Klein :   3:53
Well, we have six sponsoring organizations, as of now, and we may have more. It's My Heart, New England, I already mentioned, Adults Living with Congenital Heart Defects of Massachusetts were the two groups who started it. But also, the local branch of the Children's Heart Foundation, the Ethan Lindberg Foundation, mended Little Hearts of Boston and ACHA, the Adult Congenital Heart Association. So it's wonderful to have all these people come together and work together and get to know each other because we are just one big family and one big community.

Anna Jaworski:   4:28
Absolutely. There's so much more strength when we all work together.

Mary Kay Klein :   4:34
I agree. I agree, and I think that's a theme that carries through in different ways throughout the conference. I know we're gonna be talking in a few minutes about some of the speakers and some of the topics, but one of the things that we emphasize is that we're not just talking about something physical that might require surgery or medication or whatever, we're talking about mind, body, and spirit together because we're whole human beings, and there are different parts of the program that emphasize that. We also have speakers from many different hospitals in different places who again, are working together to help us put on this program for everyone in the community. I really like that aspect of working together.

Anna Jaworski:   5:14
Oh, I know. It's awesome because you have people from Boston Children's. You have people from Brigham and Women's

Mary Kay Klein :   5:20
Yeah. There used to be two hospitals, Women Lying-in and the Brigham Young.

Anna Jaworski:   5:25
And then, I seem to recall something that was really unusual to me, a floating hospital?

Mary Kay Klein :   5:31
The Tufts floating hospital. We do have a speaker from there. I think that one time it was actually on a ship  

Anna Jaworski:   5:40
Isn't that amazing?

Mary Kay Klein :   5:41
And we also have a speaker from Mass. General and a speaker from Boston University's Child Life and Family-Centered Care Center.

Anna Jaworski:   5:49
See, I just think this is fabulous. Why did you start this conference, and what's the major goal of the conference, Mary Kay?

Mary Kay Klein :   5:56
The major goal of the conference, first of all, is to assure people that they're not alone. It's difficult living with a CHD or being a parent or a family member or friend or spouse of someone with a CHD and I think, first of all, that's important. Secondly, I think information is important. Understanding where CHD care is going. Understanding better, how to participate in one's own care, what individuals could do to make things better for themselves. I think all of those things are very important goals for the conference.

Anna Jaworski:   6:30
Yeah, I think so too. And I also like how there are networking opportunities, because when you attend this conference in person, you get a chance to sit at a table with somebody else, and you never know that person may be dealing with the same heart defect or the same kinds of complications from a heart defect.

Mary Kay Klein :   6:51
Yeah, and we have found that definitely to be true. People have left and they've written glowing evaluations, saying how much it meant to them to talk to the people they met and to learn from them and to share with them some of the experiences that they've had.

Anna Jaworski:   7:05
Yes, and I also love the fact that you have activities for the children so they're not stuck there with their parents if they don't want to be. They have a safe place where they can go play and they can interact with one another. The siblings could be interacting as well, and the parents can feel safe knowing that the children are in a safe place, doing fun activities. While they can focus on what's new in pediatric cardiology or how different people have experienced growing up with a congenital heart defect or whatever the topic is that's being discussed.

Mary Kay Klein :   7:40
That's true, that we have a lovely place for the children to be, close to where the parents are so they could go back and forth and see them, and they have their own activities and their own food, and we don't charge extra for the babysitting, and I think...I think, based on feedback we've had in the past, and my own experience, the most important thing is to know that we're not alone and that there is a magnificent, supportive community that we can become part of and network with that will help us get through whatever trials tribulations there are. That's important, too, because for some families that could be a burden.

Anna Jaworski:   8:14
Yes, that really could

H2HwM ad:   8:16
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Baby Blue SC ad:   8:52
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Questions and Comments:   9:24
You are listening to "Heart to Heart with Anna." If you have a question or comments that you would like to address 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:   9:49
Mary Kay, before the break we were learning about the Care, Hope, discover 2019 Conference, and in this segment, I want us to start by, first of all, saying where the conference will be and how people to register.

Mary Kay Klein :   10:02
Yes, the conference is at the Hilton Garden Inn, a hotel in Waltham, Massachusetts. Waltham is right outside Boston, and it's close to a lot of the big highways, which makes it easy access for a lot of people. It also means free parking, which is wonderful.

Anna Jaworski:   10:20
Yes, that is what is wonderful.

Mary Kay Klein :   10:22
It's on Saturday, October 26. Registration starts at eight o'clock. The program goes from 9 to 4:30, and if people want to stay around and have some hors d'oeuvres and talk later, that's also very much a possibility. The way to register is to go to the website, which is www.carehopediscover -all one word- carehopediscover.com The registration fee, until October 15th, will be $60. After October 15th it goes up to 75. And for that, you get the all-day program lunch, coffee breaks, and babysitting for the children if you need that. So again, the website is www.carehopediscover -all one word- .com.

Anna Jaworski:   11:18
Perfect. Okay, well, what can health care professionals, families, and adults living with congenital heart defects expect from this conference, Mary Kay?

Mary Kay Klein :   11:29
Well, why don't I tell you a little bit about some of the speakers and what they're going to be talking about. I think that would be helpful. We have two speakers for our opening session. Dr. Ram Emani from Boston Children's, and he's going to talk about recent trends and changes in heart defect care and also shared decision making. And he is gonna be followed by Dr. Ami Bhatt from Mass. General who was going to respond to that. And I think she may also be talking some about medications and what they're used for and how they help. Then after that, we're going to have two sets of breakout sessions. The 1st one, there two options. One is Dr. Doug Mah from Children's Hospital who is a specialist in electrophysiology. In the past, the sessions on electrophysiology have been very popular, and then the other alternative is the dialogue between Dr. Mike Landzberg of Children's and the Brigham and Dr. Paul Thayer from Boston University. He's the one who's the program director for the child life and family-centered care, and they're gonna talk about palliative care from the perspective of a physician, and I believe Paul Thayer is an educator and he also has some theological training. And then after lunch, there are going to be two more breakout sessions, and you choose one. One is Fred Wu, who is going to talk about issues that can come up post-Fontan, particularly liver issues. And the other alternative is Mark Zilberman from Tufts, who deals with non-invasive ways to diagnose different aspects of congenital heart disease. He does a lot of work with echocardiology, so those are the speakers. We also have some panels in round tables,

Anna Jaworski:   13:17
Yeah, we'll be talking about that a little bit more in the show. But for right now, I just want to focus on that sounds like a really full agenda, and I'm really glad that I'm bringing my husband this year because I want to go listen to every single one of those speakers and I can't if you're having concurrent sessions, so I'm going to have to divide and conquer with my husband. But if I'm not mistaken, all of the speakers in the morning, are speakers who have been to your conference before and they're all amazing. I remember listening to Dr. Emani and Dr. Bhatt. They're fabulous.

Mary Kay Klein :   13:54
I think our new one is Doug Ma, because the person who had been speaking about electrophysiology, I think is on leave or studying or somehow not available. But most of them have been with us before.

Anna Jaworski:   14:06
Yeah, and they're all excellent speakers. So, friends, you're not going to want to miss this conference if you live anywhere near the Boston area, it's in Waltham

Mary Kay Klein :   14:15
and it's in the hotel, so it's possible to get a hotel room.

Anna Jaworski:   14:18
Now. Is there a discounted rate for rooms in that hotel room if you're part of the conference?

Mary Kay Klein :   14:25
There is. I don't know when that expires. That's something you'd have to check on the website, but yes, check the website for that. There is a group rate for the conference.

Anna Jaworski:   14:35
Okay, Great. so you mentioned earlier how the children have their own special place to be so that mom and dad can focus on the speakers and not have to worry about the little ones. Can you tell me some of the fun activities that the little ones will have?

Mary Kay Klein :   14:53
They usually bring a variety of things. I mean there are videotapes and things for the kids that might want to watch them. For younger kids, there are things like blocks and toys and those kinds of things. We are thinking about maybe having a couple of speakers go in and spend a little time with the children, but we're going to wait and see who registers, what their ages are, what their interests are. Because in the past, we've seen quite a variety of interests and ages. So we want to really focus on having something for everybody,

Anna Jaworski:   15:26
Right. If I'm not mistaken in the past, you had somebody who did face painting, and they did bubbles. Do you think they might be doing thst again this time?  

Mary Kay Klein :   15:36
Yeah, I don't know for sure, but I think activities like that are being plannned. We'll put it that way.

Anna Jaworski:   15:43
Those are popular kinds of activities. Are we going to have the ice cream social again this year?

Mary Kay Klein :   15:50
I believe so, in the afternoon. Yes.

Anna Jaworski:   15:52
That's always a lot of fun. And that's when the kids joined the parents. We all get together. We'll have ice cream together. It's a lot of fun.

Mary Kay Klein :   16:01
Uh-huh. Ice cream is always good.

Anna Jaworski:   16:03
Now, what about the teens, Mary Kay? Is there anything special that y'all are doing for the teens?

Mary Kay Klein :   16:10
Not specifically. We have not had a lot of teens at these conferences. However, we are, as I mentioned before, going to have some panels and some other things. In addition to the speakers. One of the panels is going to be parents whose children are going through the transition from pediatric care to adult care and they're going to talk about some of the trials and tribulations and joys and successes in that area. And that's, I think, a pretty crucial one because a lot of teenagers get to a point where they don't want to deal with it anymore.

Anna Jaworski:   16:43
Yeah...

Mary Kay Klein :   16:44
They think they're fixed. They want to move on, and I think that's a very important topic. The other panel we're going to have is adults who are going to talk about how they have coped, how they have lived with a CHD and what strategies they've used and what their difficulties, obviously, but they also all talk about the positive

Anna Jaworski:   17:06
And that's one of my favorite parts of your conference. Every year you do that. Every year there's a wonderful blend of men and women who sit on the panel and talk to us about what it was like to grow up, and they're different ages so we could look back several decades with some of them, and some of them are a little bit younger. I love that! To me, that's definitely one of the best parts of the conference.

Mary Kay Klein :   17:31
Yeah, I think so, too.  

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Anna Jaworski:   19:29
Before the break, we were talking about the Care, Hope, Discover 2019 Conference and it sounds so fabulous, Mary Kay. We already talked about some of the speakers. We already talked about some of the topics and how there's even a special room for children, babysitting is free, and that there will be some panel discussions, which is great, but I know there's even more than that. But before we get to what else is still involved, let's remind our listeners how they can register for the conference.

Mary Kay Klein :   19:58
Yes. To register for the conference, go to www CareHopeDiscover -all one word- .com, and you should be able to find everything there. The program registration, etcetera and information about the hotel and how to get there. Everything that you would need to know.

Anna Jaworski:   20:18
That's great. Okay, friends, you don't want to miss this conference. One of the things that I like about it is it's not humongous. There aren't 2000 people there. There's 100 to 200 people there, so it's small enough that we all get to know each other. But it's big enough that there's a variety of people there. You're always meeting new people, right Mary Kay?

Mary Kay Klein :   20:40
that sounds just about right. Yes, it's not huge, huge, which I'm glad for. And they're mostly people from New England who come, not just from Massachusetts but from around New England. So that the contacts and the friendships and the networking continue after the conference. It doesn't end when the conference is over. So it's a nice sized, relaxed, friendly group,

Anna Jaworski:   21:02
Yes,  

Mary Kay Klein :   21:02
Although we're dealing with some difficult topics, obviously, but great atmosphere.

Anna Jaworski:   21:07
It is...

Mary Kay Klein :   21:08
I am really looking forward... 

Anna Jaworski:   21:09
It's very relaxed. That's what I like. Once upon a time when this conference was first started, it was called Mind, Body, Spirit? Is that right?

Mary Kay Klein :   21:18
Uh-huh, uh-huh

Anna Jaworski:   21:19
It was called Mind, Body, Spirit and the conference topics focused on one of those three areas. And I think that you've kept that philosophy of looking at the whole person in a gestalt manner.

Mary Kay Klein :   21:34
Yep, looking at the whole person is very important because it's not just a medical issue or an issue about physical problems, changes, interventions or whatever. Each person in the CHD community is a whole person, whether they're the person living with CHD or family member or friend or caregiver. All of us, are whole people, and we've really tried to keep that focus on the whole person,

Anna Jaworski:   21:59
Right. That's why I enjoyed listening to Paul Thayer before I thought that he brought a very unique perspective to the conference, and I remember in some of the other conferences that I've attended, that there's been almost like a Zen-like session. Where you go and you could just get in touch with your emotions and it's about relationships that you're building across the community.

Mary Kay Klein :   22:25
Yeah, I think that's really important. And they're a couple of other networking opportunities that we haven't mentioned yet.  

Anna Jaworski:   22:31
 Okay.

Mary Kay Klein :   22:31
One is that they're going to be tables around the lobby and people representing different organizations, who can give you some of their literature, tell you what the do and would be really happy to talk with you. And then during the lunch hour, we're gonna have some roundtable discussions that you can choose from some by organizations and some just by individuals who have things they want to share. And if you'd rather just have lunch and relax, there'll be tables for that, too. But the networking opportunities, very important.

Anna Jaworski:   23:03
They really are, and I'm excited that you've invited my husband and me to take part in that. So, I will be having a table to talk with anybody who wants to write for the book that I'm putting together in 2020 that is the "Heart of a Heart Warrior." And Mary Kay knows about the very first book that came out in my, "The Heart of..." series because Mary Kay wrote for, "The Heart of A Mother," her husband, Ted wrote for "The Heart of A Father," and so we will be looking for people at this conference who are interested in writing for "The Heart of A Heart Warrior." I think having a place like this conference to go to, to actually network and meet people is just priceless for me. My husband is a nurse anaesthetist. He will also be running one of the tables, and he'll be there to talk to people about how to be advocates in a medical setting. From a dad's perspective, who is a nurse, and what it's like when you're on the other side. I think we have different experiences with that, and I know a lot of people in our community deal with anxiety and PTSD when it comes to even just going for their flu shot, and so hopefully Frank will give them some pointers on what they can do when they have these doctors appointments so that they can have a successful meeting without worrying about being too stressed out. That's what I'm hoping he'll talk about. We'll see, because he's his own person. But this is what I'm going tosuggest that he do.

Mary Kay Klein :   24:30
I think that would be very valuable.

Anna Jaworski:   24:32
Yeah.  

Mary Kay Klein :   24:33
I think there are a lot of people who would be interested in hearing when he has to say on that. So, ...

Anna Jaworski:   24:36
Yeah,

Mary Kay Klein :   24:37
...I hope he does.

Anna Jaworski:   24:38
Yeah, I do, too. I mean, that's what I'm going to recommend to him because I see so many people who get stressed. And I know, from my own experience, just worrying about that other shoe falling. When you're in the doctor's office, you kind of ramp yourself up before you go into the doctor's office and it's not always pleasant. Even though we love the cardiologists and we love their nurses and we're grateful for what they've done. I think it's still stressful when we have to go into a medical setting, don't you, Mary Kay?

Mary Kay Klein :   25:09
I agree with that. You never know what's going to happen or what kind of news they're going to give you, you know, especially for people who've had difficult experiences in the past. You're right, even getting a flu shot's a big deal or a blood test, or ...

Anna Jaworski:   25:21
Right!

Mary Kay Klein :   25:22
...anything like that and

Anna Jaworski:   25:23
And as they age, I'm seeing with my friends who are getting older because we're all getting older, that they have new problems because as we age, we all experience our body, not always doing what we want it to do. But for our heart warriors, they're extra considerations.

Mary Kay Klein :   25:41
That's right, Yeah, being a heart warrior does not mean you're exempt from every other disease of aging or anything else that somebody else might have to deal with.

Anna Jaworski:   25:50
Exactly

Mary Kay Klein :   25:51
Seems unfair, but that's the way it is.

Anna Jaworski:   25:51
I know! I know, because they've already been through so much. But yeah, that's just the way it is. So we know that life's not fair, but we just have to tackle it with the most positive outlook we can have and that's what I love about your conferences. I feel it's a very positive conference, and it's all about all of us working together to help one another make the most out of the life that we do have. So Mary Kay, tell me what you think is the most important lesson that you want your participants to take away from your conference.

Mary Kay Klein :   26:22
I think based on feedback we've had in the past, and my own experience, the most important thing is to know that we're not alone and that there is a magnificent, supportive community that we can become part of and network with that will help us get through whatever trials and tribulations there are.

Anna Jaworski:   26:41
Yeah, I agree. I think that's a really important lesson and knowing that you're not alone, like you said, the whole purpose for starting the conference. And that's the whole purpose I have with this podcast is to help people recognize they are not alone because there's power in all of us working together and helping one another.

Mary Kay Klein :   27:02
Absolutely. There is.

Anna Jaworski:   27:04
Well, thank you so much for coming on the program today, Mary Kay, to talk about the Care, Hope, Discover 2019 conference. I'm so excited!

Mary Kay Klein :   27:13
I am too, and I really appreciate the time and the privilege of being with you.

Anna Jaworski:   27:18
Well, I can't wait to see you!  

Mary Kay Klein :   27:19
Won't be long.

Anna Jaworski:   27:20
I know! thanks again for inviting me to have one of those tables because I'm hoping that some of the people who are already sending me their essays will be there so I can get my picture made with them and we could talk about their essays. But I'm also helping to meet some new people who want to take part in the book. I think it'll be awesome. Well, that does conclude this episode of "Heart to Heart with Anna." Thanks for listening today, my friends. If you enjoyed this program, take a moment, please, and visit our Patreon page that's www.patreon.com/hearttoheart. For the price of a pizza, you can support "Heart to Heart with Anna," for an entire year. So please consider supporting our program and remember, my friends, you are not alone.

Closer:   28:05
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.