Living with a Bi-Directional Glenn Heart

Most people today (2019) with a single ventricle heart typically have one of two courses of treatment for their heart condition: 1) a series of surgeries culminating with the Fontan Procedure or 2) a heart transplant. That is not the case with our Guest in this episode. Born in 1970, returning Guest Laura Ryan, talks about what her life has been like growing up with a single ventricle heart palliated in a rather unusual way -- with a Potts shunt, a Waterston shunt and a Bi-Directional Glenn shunt. 

In this episode she shares what it was like for her as a child and what her endurance was like. She talks about how she interacted with her siblings and friends. She then moves on to share what it was like for her once she decided she wanted to start her family. In this very candid interview, Laura shares some of the travails she endured and what helped to her make it through the difficult times.

Finally, Laura shares how she feels pregnancy affected her body and her heart. She also shares her doctor's prognosis for her future, especially given her sequence of medical events thus far. Laura's story is one of inspiration and hope.

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Transcript

Living with a Bi-Directional Glenn Heart

Laura Ryan  00:00

I was seeing a cardiologist that I liked. He was from Connecticut, but he was here in Florida. He wound up leaving and I later found the cardiologist I see now. He recommended a maternal fetal doctor. I walked into that doctor with Jed -- seven years old. He t ook one look at me. He read my chart. He said, "So are you going to terminate?" 

Anna Jaworski  00:26

Oh my gosh! 

Laura Ryan  00:27

And I said, "No. Why would I be here?" He goes, "Well, you're gonna die."

Anna Jaworski  00:31

Welcome to "Heart to Heart with Anna." I am Anna Jaworski, and the host of today's program. I'm very excited for today's show to feature a veteran "Heart to Heart with Anna" guest. She is here to share her stories with us about how she's been able to survive almost into her 50s with a single ventricle heart. Today's program is entitled 'Living with a Bi-Directional Glenn Heart.' Laura Ryan is an adult ccTGA or congenitally corrected transposition of the great arteries and DILV or double inlet left ventricle Heart Warrior. Although Laura is considered a single ventricle Heart Warrior, she has not had the Fontan. Born in 1970, she has had a Potts shunt, a Waterston shunt, and a bi-directional Glenn shut. Laura is married to her husband Jamie, and they are parents of Jed and Liam. Laura homeschooled her children and they are now both adults. As a 49-year-old, complex congenital heart defect survivor, Laura is unique in having survived her surgeries and the birth of her two children. Even though raising children takes an enormous amount of energy, she was able to take care of the children as infants, through their early teens and even into their adulthood. In this episode of "Heart to Heart with Anna," we will talk with Laura about how she has survived with a single ventricle heart, how having children affected her heart, and what the future holds for her. Welcome back to "Heart to Heart with Anna," Laura.

Laura Ryan  02:09

Thank you, Anna. I'm happy to be here. And thanks for having me.

Anna Jaworski  02:14

It's always a delight to talk with you, Laura. And my longtime listeners will remember you -- let's see, you've been a guest host and how many shows have you been on?

Laura Ryan  02:26

I believe two. Okay, I did one with Kathy Ware and then one on my own.

Anna Jaworski  02:34

Right. Well, it's always great to have you back and it's been a little while. So let's go ahead and start by talking about your heart defects. When did you first learn that you had a single ventricle heart? And what did that mean to you when you heard that term?

Laura Ryan  02:51

You know, I don't know if I really remember that because I grew up knowing I had a heart condition. And I grew up knowing the different terms and the terms always changed. You know, as the years changed, the terms changed. So I always knew that I had one ventricle, two chambers, instead of four chambers or at least that's what I perceived it to be. So I always knew my heart was different. I don't think I ever actually understood that until I was an adult.

Anna Jaworski  03:31

Right. Well, that makes sense, because that's really complicated.

Laura Ryan  03:36

Yeah, it is, until I was an adult and really started doing the research on my own. I didn't know what it meant, because my parents trusted the doctors, and whatever the doctors said is what they did. Thank God, I had good doctors.

Anna Jaworski  03:54

Yeah, absolutely. Yes.

Laura Ryan  03:57

Because my mother was good with research on certain things, like when I started having migraines, the doctors would tell her, "Oh, it's nothing. It's just the way she gets stomach viruses." Because migraines weren't a big thing when I was 12 years old. She researched it; she figured it out. But when it came to my heart, she's like, "Whatever the doctors say; it's too complicated."

Anna Jaworski  04:23

Yeah, it is so complicated. And back then there wasn't the internet. There wasn't information that was user-friendly for people who were not doctors themselves. 

Laura Ryan  04:32

I bet you did! Having met you in person, I bet you did. I bet you were just as competitive with them as you would have been if you would have had a fully functional heart. Right and migraines... They were talking about it in the newspaper and that's how she knew that that's what was happening to me. With the heart, it wasn't in the newspaper every week. So she just left it up to them. And thankfully she listened to them when they said, "Let her self-limit." She did. And I did everything as a kid that my brother and sister did. I mean... Oh, yeah, I climb trees. I bowled. I did gymnastics. The only thing I was not allowed to do was join the competitive gymnastics team.

Anna Jaworski  05:20

Right. Well, I'm amazed they even let you do it because knowing you, you push yourself to the limits anyway, even if you weren't competing. So tell me when you were younger, and as you entered adulthood, what was the prognosis for you? What did they say you might need? For example, I was warned, years ago that my son might need a heart transplant someday. Were you ever told anything like that?

Laura Ryan  05:49

It was mentioned but then, it hasn't been mentioned in like 20 years. And when I brought it up to my current doctor, he said, "Yes, it's a possibility. But at this point, if we were to even consider a transplant for you, I would need heart/lung... 

Anna Jaworski  06:14

Oh, wow. 

Laura Ryan  06:15

...because my lungs are both -- they're connected to my heart, But they're not connected to each other.

Anna Jaworski  06:22

I'm not exactly sure what you mean by that. 

Laura Ryan  06:25

Well, something like that. Your lungs are like supposed to be attached to each other at one point.

Anna Jaworski  06:33

So is he's saying that you also have a anomaly with your lungs?

Laura Ryan  06:37

Right, because I don't have a left pulmonary artery. So my left lung is attached to my heart, but it's not attached to the right lung, or it's attached to the right lung, but it's not attached to my heart separately. Either it's not attached to the heart, or it's not attached to the other lung. So if they did a transplant, they would either have to transplant both lungs and the heart, even though my lungs are fine, or they would have to leave part of my old heart in and sew it onto the new heart. Which only one hospital in the United States right now is doing. 

Anna Jaworski  07:24

Wow, 

Laura Ryan  07:24

This was like 10 years ago. But his answer also was, "We don't need to discuss that because you're doing so good. And by time we even need to discuss it, there'll probably be more options."

Anna Jaworski  07:40

Right. Right. Things could be totally different. 

Heart to Heart with Michael  07:43

"Texas Heart Institute was 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.

Laura Ryan  07:43

Right?

Baby Blues Sound Collective  08:13

“Home  Tonight Forever” by the Baby Blue Sound Collective. (Anna) "I think what I love so much about this CD is that some of the songs were inspired by the patients."  (Dr. W) "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."  (Anna) "I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects."  (Dr. W) Enjoy the music.  (Anna) Home. Tonight. Forever.  

Rejoiner  08:58

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  09:17

Okay, in the first segment, Laura, we actually talked quite a bit about your medical history. It's pretty amazing to me, that you were born in the 1970s. For those of you who are longtime listeners, you know, my son was born in the 1990s. He was born with hypoplastic left heart syndrome and he has had a Fontan procedure. The Fontan has been around since the 70s, if I'm not mistaken, and it was started in France by Dr. Francis Fontan, but it hasn't always been done here in the United States and it wasn't really done for children with a hypoplastic left heart syndrome heart until the 1980s after the Norwood Procedure was used by Dr. William Norwood. So the Fontan Procedure is fairly new. I mean, when you look at the long history of surgery that's been done. So it's surprising to me that you've been able to survive with a Pott Shunt, and a Waterston Shunt and the bi-directional Glenn and never having the Fontan. So it seems to me that what you were just saying before we went to break about - if you were to have a transplant that you would need a heart/lung, because there's an anomaly with your lung as well, that that probably precluded you from having the Fontan more than anything. Would you agree with that?

Laura Ryan  10:38

Well, it's not necessarily an anomaly with the lung. It's an anomaly with my pulmonary artery. 

Anna Jaworski  10:45

Okay. 

Laura Ryan  10:46

That's the connection to the lung. 

Anna Jaworski  10:48

Right. Right. 

Laura Ryan  10:50

And that my lungs are fine. It's, my heart doesn't connect correctly to my lungs, because I don't have a left pulmonary artery. And that was cut during one of the surgeries and I don't know which one.

Anna Jaworski  11:06

Oh, wow. So it was cut. So that's not even something they can go back and repair.

Laura Ryan  11:11

Right. It was cut. They don't think it was an accident. They think it was done on purpose probably during the attempt at the Fontan because of all the scar tissue. It was just too scarred because I also, when I was born, I had pulmonary atresia... 

Anna Jaworski  11:30

Oh, wow. 

Laura Ryan  11:31

...as well. 

Anna Jaworski  11:31

Okay. 

Laura Ryan  11:32

But that was taken care of when they got rid of the pulmonary artery.

Anna Jaworski  11:36

Oh, wow. Okay. Well, I'm not a doctor. I'm just a mom. And I'm thinking, "Wow." I'm trying to visualize what this looks like and it's very complicated. And so it's amazing that even though you have this problem with your pulmonary artery, even though you only have a bi-directional Glenn, it has served you very well and has not held you back. You were just telling us that you were able to keep up with your brother and sister. You did gymnastics. I mean, I've met you. You look like a tomboy.

Laura Ryan  12:09

Yeah, I've always been a tomboy. I lived in trees. I lived in the mud.

Anna Jaworski  12:15

I could just picture you're doing that Laura. I could see you climbing a tree and not having any problem with that. I can see you playing in the streets with your sister and your brother and getting dirty and having your mom call you guys into the house at night to get your dinner. 

Laura Ryan  12:32

Yeah. 

Anna Jaworski  12:34

Amazing. 

Laura Ryan  12:35

And I was more of a tomboy than my brother. My brother is was still is a nerd. A video-game-comic-book nerd. 

Anna Jaworski  12:49

Okay, 

Laura Ryan  12:50

Not me. Me? I was the one that was doing the sports, playing the games, you know, out in the street playing stickball with the neighborhood kids.

Anna Jaworski  13:01

Okay, so then you fall in love, you get married, and did you even ask about getting pregnant? Or did you just do it?

Laura Ryan  13:10

The first time -- just did it.

Anna Jaworski  13:13

That doesn't surprise me at all, Laura. Oh my gosh! Did your doctors just about have a heart attack when you walked in and they realized you were pregnant?

Laura Ryan  13:22

Yes. When my cardiologist found out, he was actually going to try to talk me into having an abortion because my mother wanted him to not because he wanted me to... 

Anna Jaworski  13:35

Wow 

Laura Ryan  13:36

...even though my mother was against abortion but in the case of her baby... 

Anna Jaworski  13:41

She was afraid of losing you. 

Laura Ryan  13:42

I wore a shirt that said, "Mary kills her baby in the crib. You sent her to the jail and call it 'murder.' Alice kills her baby in the womb and you applaud her choice.

Anna Jaworski  13:57

Oh, wow. So if that didn't tell him that you didn't want an abortion, I don't know what would

Laura Ryan  14:02

As soon as I walked in, he started laughing. He goes, "I guess I have to change my tactic here." That is exactly what he said.

Anna Jaworski  14:12

Wow. 

Laura Ryan  14:14

And he told me that he had a conversation with my mother. And I wasn't happy about that but I understood where she was coming from.

Anna Jaworski  14:22

This was before the HIPAA laws. (laughter) You can't get too upset. And I imagine this doctor had known you all your life and had known your mother

Laura Ryan  14:33

Since I was two hours old.

Anna Jaworski  14:35

Oh my gosh. So yeah, so he was part of your family. 

Laura Ryan  14:39

Oh, yeah. He's like a second father. I call him once a month.

Anna Jaworski  14:44

Oh, wow. That's so sweet. 

Laura Ryan  14:46

Yeah. 

Anna Jaworski  14:47

Is he still your doctor? 

Laura Ryan  14:48

No, but I do consult him on things. He's retired. He's 89. He turned 89 in May.

Anna Jaworski  14:57

Wow. Yeah. Okay, so the first time You just walked in there, you were pregnant. Apparently, your mother must have known you were pregnant and you knew you were pregnant before you saw your cardiologist... 

Laura Ryan  15:07

Right? Well, I told my father first that I was pregnant because I knew my mother would freak out. And I knew my father would be more understanding. And then my father broke the news to my mother.

Anna Jaworski  15:21

Oh, you didn't even tell her? You just let your dad do it? Yes. You are afraid she was gonna freak out, weren't you? 

Laura Ryan  15:29

Oh, yeah. 

Anna Jaworski  15:30

Okay, so she called the doctor and said... 

Laura Ryan  15:33

Yeah, 

Anna Jaworski  15:33

"...this can't happen." And you went to the doctor and he said, "Okay, I have to change tactics" when you walked in with a shirt that said, 'I'm not having an abortion.' 

Laura Ryan  15:42

Right. 

Anna Jaworski  15:43

So what happened?

Laura Ryan  15:44

He said, "Okay, I guess we're doing this." I said, "Yes, we are." And he said, "Well if we're doing this, you're gonna have the baby here at Mount Sinai." He goes, "I already spoke to the obstetrician, I want you to see because I knew you weren't going to go for it." 

Anna Jaworski  16:02

He already knew you. 

Laura Ryan  16:03

He goes, "I knew this is the way it was gonna go." He goes, "But I was going to try."

Anna Jaworski  16:07

Right. Because he had to tell your mom that he was going to try because she asked him to 

Laura Ryan  16:14

Right

Anna Jaworski  16:15

Okay. So what year was this that you got pregnant, Laura?

Laura Ryan  16:18

'93

Anna Jaworski  16:20

1993 and you were what age?

Laura Ryan  16:22

23

Anna Jaworski  16:23

You were 23. Okay.

Laura Ryan  16:25

So, I went that day, saw the maternal-fetal specialist. And he tried to talk me into having an abortion. And I said, "No..."

Anna Jaworski  16:37

Oh, wow, the maternal specialist also tried to talk you into having an abortion? 

Laura Ryan  16:40

Yes. 

Anna Jaworski  16:43

And he had not spoken to your mom. 

Laura Ryan  16:44

No. 

Anna Jaworski  16:45

Okay, so what did you say then? 

Laura Ryan  16:48

I said, "Out of the question." 

Anna Jaworski  16:50

Okay. 

Laura Ryan  16:51

And he said, "But you could die." And I said, "Yeah, I could, I could die hen I leave here. I could walk out the door and get hit by a bus. What's your point?" And he goes, "If you want my wife or my daughter, you wouldn't be having this baby." I said, "Well, thankfully, I'm not your wife or daughter."

Anna Jaworski  17:14

Okay,

Laura Ryan  17:15

And he goes, "Okay, well, if we're going to do this, we're going to do it my way." I said, "Fine. What's your way?" He goes, "At six months, you're going to be admitted to the hospital on bedrest..."  "... and you're going to have the baby at 36 weeks by C-section." I said, "I agree to your way except for the C-section." He said, "Why?" And I said, "Because C-section's harder on the heart." And my cardiologist actually agreed with me that a C-section would be too hard on the heart... 

Anna Jaworski  17:27

Oh  Wow. 

Laura Ryan  17:51

...That we should go for induction. 

Anna Jaworski  17:54

Okay 

Laura Ryan  17:55

And we should induce at 36 weeks.

Anna Jaworski  17:58

Okay, well, it sounds like they had a plan. Did things go according to plan? 

Laura Ryan  18:04

No. Because we did it my way. 

Anna Jaworski  18:07

Tell me your way.

Laura Ryan  18:08

My way was I didn't get admitted to the hospital till seven months. And he was 37 weeks. And he came naturally; he didn't need to be induced because he was ready.

Anna Jaworski  18:22

Wow. And you had a normal delivery? 

Laura Ryan  18:26

Normal delivery. I went into labor while I was in the hospital. He came to check. He's like, "I'm gonna see if we can induce you." And I said, "Okay" and he checked and he's like, "You're in labor." And I was arguing with him. I'm like, "No, I'm not." He's like, "You're in labor. You're fully effaced and like five centimeters dilated. You're in labor." I'm like, "No, I'm not. I don't feel it." But I was in labor. 

Anna Jaworski  18:55

Wow. 

Laura Ryan  18:56

And he was born the next morning. He was perfectly healthy. He was a little small because of my heart. Which we knew he would be. But he went home three days later. At that time, it was normal to keep them for three days.

Anna Jaworski  19:12

Right. Right. So do you think that your heart suffered any for carrying him so long and for having the vaginal delivery?

Laura Ryan  19:23

No. And I was actually told after by my cardiologist that if I wanted more, I can do so. Just make sure I'm done before. I'm 30. I can have as many more as I want because it went so well. Just be sure I'm done before I'm 30.

HUG Store  19:48

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HUG Info  20:23

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 Jaworski  20:58

So before the break, Laura, you were telling us how you did it your way in having your first son and I believe your first son's name was Jed. 

Laura Ryan  21:06

Yeah, 

Anna Jaworski  21:06

right? 

Laura Ryan  21:07

Yes. 

Anna Jaworski  21:07

Okay. And that you could have as many children as you wanted, provided you had them before you were 30 years of age. Is that right?

Laura Ryan  21:14

Yes. But again, I did it my way. 

Anna Jaworski  21:17

Tell me about Liam. 

Laura Ryan  21:18

Liam, was wanted and planned. But not exactly planned for the time that he was born. Because I had three miscarriages in between him and Jed.

Anna Jaworski  21:31

Oh, wow! Three miscarriages! I am so sorry. I did not know that about you, Laura.

Laura Ryan  21:37

Yeah, yeah. And the last one was twin girls. I was 20 weeks along.

Anna Jaworski  21:43

Oh, my goodness. So you had been feeling them kick... 

Laura Ryan  21:47

Yeah. Yep. 

Anna Jaworski  21:49

Oh, how devastating!

Laura Ryan  21:52

Yeah, so that was rough. And then I got pregnant with Liam -- two weeks after my 30th birthday. And I was very upset when I found out because I didn't want to go through that again.

Anna Jaworski  22:12

Well, of course, to have lost so many babies. That's, that's rough. That's really rough. 

Laura Ryan  22:20

Yeah. 

Anna Jaworski  22:20

But it seems like it was easy for you to get pregnant. You kept getting pregnant really easily.

Laura Ryan  22:25

Yet. It just all wanted to come early. 

Anna Jaworski  22:28

Wow. 

Laura Ryan  22:29

That was the thing. I just couldn't hold them. 

Anna Jaworski  22:31

Um hmm. Okay, so you're 30 years old. They told you they didn't want you to get pregnant after 30. You got pregnant after 30. You're scared... 

Laura Ryan  22:40

Right 

Anna Jaworski  22:40

Because you've already had all of these miscarriages. So then did they put you on a strict regimen?

Laura Ryan  22:46

Well, I went to a doctor here in Florida. I was seeing a cardiologist that I liked. He was from Connecticut b ut he was here in Florida. He wound up leaving, and I later found the cardiologist I see now. He recommended a maternal-fetal doctor. I walked into that doctor with Jed -- seven years old. He took one look at me. He read my chart. He said, "So are you going to terminate?" 

Anna Jaworski  23:16

Oh my gosh! 

Laura Ryan  23:17

And I said, "No. Why would I be here?" He goes, "Well, you're gonna die." 

Anna Jaworski  23:22

Oh, Laura. 

Laura Ryan  23:24

I looked at him. I said, "Thank you." And I walked out. I took Jed and I walked out and he looks at me and goes, "You're gonna die?" I said, "I'm not dying." And I said, "He doesn't know what he's talking about." I said, "That's why we're leaving." I didn't pay my copay. I wrote the insurance company. I told them not to pay him, and I refused to send them any money. That night when Jamie got home, I said, "I made a decision. I'm having this baby in New York. 

Anna Jaworski  23:52

Oh, wow. 

Laura Ryan  23:53

With my doctor that I had Jed with. I lived with my mother-in-law for seven months so that I can have Liam. 

Anna Jaworski  24:07

Wow, did she help take care of you?

Laura Ryan  24:10

She did, because she was healthier then.

Anna Jaworski  24:13

Well, she was a lot younger. And she was able to and I'm sure she was, hopefully, excited about having another grandchild.

Laura Ryan  24:22

She was and what we did was we enrolled Jed in school there. That was the only time I didn't homeschool. We enrolled him in school. Jamie stayed here in Florida and worked. And then with Liam I went into preterm labor at 28 weeks.

Anna Jaworski  24:40

Oh my goodness -- 28 weeks. You must have been panicked.

Laura Ryan  24:44

I was 

Anna Jaworski  24:44

Yeah 

Laura Ryan  24:44

I was in and out of the hospital from 28 weeks until he was born at 34 weeks.

Anna Jaworski  24:51

Wow. So he was little.

Laura Ryan  24:54

He was little; he was four pounds, three ounces. So he wasn't that little 

Anna Jaworski  24:57

Yeah, that's pretty good for a preemie. 

Laura Ryan  25:00

Yeah. He spent eight days in the NICU only because he refused to eat. And then we came home to New York on Christmas Eve in the snow and spent Christmas at my mother-in-law's and then came back to Florida on January 1.

Anna Jaworski  25:16

Wow. That's a great way to start the new year. So one question I didn't ask you after Jed was born. Do either of your sons have a heart defect? 

Laura Ryan  25:26

No. 

Anna Jaworski  25:28

There were no murmurs? There was nothing?

Laura Ryan  25:30

No, Jed had a slight murmur that was innocent and went away.

Anna Jaworski  25:35

Wow. So you had two children... Was Liam also a vaginal birth? 

Laura Ryan  25:41

Yes. Yes. 

Anna Jaworski  25:43

So he was really tiny. So that probably wasn't as scary for them as Jed was. 

Laura Ryan  25:48

Well, Jed was four pounds, 10 and a half ounces. So he was tiny, too. Even though he was full term. Now, Jed was a good length. Whereas Liam was preemie length even though he was...

Anna Jaworski  26:00

Right. So he was tiny. 

Laura Ryan  26:02

He was tiny, tiny. He was four pounds, three ounces, but he was barely 16 inches long.

Anna Jaworski  26:07

Oh, my goodness. He was really little. Yeah. Okay. All right. You had your vaginal delivery, you still have just a bi-directional Glenn heart. Two different doctors were afraid to touch you although one did go ahead and help you to have your first baby. And then you went back to him to have the second baby. Did you even consider having another one after you had Liam?

Laura Ryan  26:31

No, because the pregnancy was fine. But his delivery was scary. When I had Jed, they proactively gave me blood to compensate for the loss of blood during the delivery. 

Anna Jaworski  26:48

Right. That makes sense. 

Laura Ryan  26:49

When I had Liam, they said they don't do that anymore. I fought them on it and said I wanted it. They said, "No." As soon as he was born, I lost so much blood that my blood pressure plummeted, and I fainted. I passed out. 

Anna Jaworski  27:11

Wow. 

Laura Ryan  27:12

They didn't put me in ICU, but they put me in the surgical step-down for 12 hours, so I didn't get to hold him for 12 hours.

Anna Jaworski  27:21

Now did they give you a transfusion after you fainted?

Laura Ryan  27:25

No 

Anna Jaworski  27:26

What? 

Laura Ryan  27:27

They got me back up with a blood pressure medicine. And once I got back up and they wanted to wait and see if I replenish the blood on my own,

Anna Jaworski  27:39

Which apparently you did. 

Laura Ryan  27:40

Yeah. 

Anna Jaworski  27:41

Wow. Okay, so did having the two boys did that worsen your prognosis or...

Laura Ryan  27:51

No, they said my heart -- after Jed and then even after Liam -- it got stronger.

Anna Jaworski  27:57

Wow. That's amazing.

Laura Ryan  28:00

Yeah, the way my cardiologist explained it was it's like exercising 24 hours a day.

Anna Jaworski  28:08

Yeah, that's what they say. That's why they say that having a baby is like running a marathon for months... 

Laura Ryan  28:16

Right! 

Anna Jaworski  28:16

...You know, your body is preparing for labor, which is just so difficult. And your heart's doing the work of two, which is really amazing. You've got a single ventricle heart. You've got lung issues. And yet your body was able to produce two perfectly healthy infants... 

Laura Ryan  28:39

Right 

Anna Jaworski  28:40

...without compromising your own health.

Laura Ryan  28:42

Right. And the doctor thinks that was good for me, because in my case, I mean, I know a couple of people that have had babies that their heart weakened after but for me, I was used to being active, 

Anna Jaworski  28:58

Right. 

Laura Ryan  28:59

I mean, like I said, all my life I climbed trees, I bowled, I did gymnastics. I was active with Jed more so than I was with Liam because I was older when I had Liam. 

Anna Jaworski  29:10

Right. 

Laura Ryan  29:11

But with Jed, we went to Disney all the time. We did everything. I always walked, I did a lot of stuff. And I was used to being active and that keeps... your blood flow increases when you're pregnant and your heart's just pumping harder. So in my case, it helped.

Anna Jaworski  29:34

And you were able to care for your infants without help, or did you need a nurse or somebody to come and help you? 

Laura Ryan  29:42

From the moment I went home, I was able to care for them. 

Anna Jaworski  29:46

That's just amazing. 

Laura Ryan  29:48

I mean, my husband helped. I had a little bit of help.

Anna Jaworski  29:51

So you were able to take care of your babies; you were able to go through two pregnancies successfully and you still survived a number of miscarriages which is very traumatic on a woman's body. How has this affected your prognosis? Because I know now you're almost 50. What does your cardiologist say about your prognosis now?

Laura Ryan  30:14

He says everything looks good. He thinks I'm gonna outlive him.

Anna Jaworski  30:19

Oh, my goodness. Does that surprise you? 

Laura Ryan  30:21

Yes, but he, he does. He's like, "You're doing great." He goes, "I see you setting new standards." You know, he doesn't see any issues.

Anna Jaworski  30:32

What I love about this is that I'm sure there are going to be some listeners whose children can have a bi-directional Glenn who cannot, for whatever reason, have a Fontan and they're afraid that their quality of life will be jeopardized. But I think your story is going to give them a picture of hope.

Laura Ryan  30:51

Yeah, I think so. Because I don't look at my quality of life any differently than my friends. I mean, yeah, I might get tired a little more than they do. But I look at some of my friends that are the same age. And yeah, they get tired, too, or rundown, or can't do certain things for other reasons. Like one of them had a total knee replacement in both knees. She can't walk a lot, either. Different reason... 

Anna Jaworski  31:21

Right

Laura Ryan  31:22

...but we're on the same level. So I walk a little slower. You want to go to Disney with me, you're just gonna walk slow.

Anna Jaworski  31:31

Well, I'm really happy to hear some good news about living with the bi-directional Glenn Shunt. You and I both did a cursory glance at the research and there really wasn't anything that we could find on people decades old with a bi-directional Glenn and so I think this is really hopeful information for those who might be having to live with a bi-directional Glenn knowing that can't have a Fontan. 

Laura Ryan  31:58

Yeah, I think it's good.

Anna Jaworski  32:00

I want to thank you for coming on the program today.

Laura Ryan  32:04

You're welcome. I enjoyed being here.

Anna Jaworski  32:06

That concludes this episode of "Heart to Heart with Anna." Thanks for listening today. If you enjoyed this show, please consider becoming a patron. For the cost of a pizza, you could be a member of Hearts Unite the Globe for a whole year and help us to continue making great shows like this one. Remember my friends, you are not alone.

Conclusion  32:30

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.