Waiting for a Heart

Lorrie Hill is a 23-year-old Heart Warrior. Living with a single ventricle heart, she has learned a great deal about the heart, her heart's idiosyncracies, and the importance of exercise in staying healthy. In this episode of "Heart to Heart with Anna," Lorrie talks to Anna about what it has been like for her to live with a heart riddled with complex defects, how her heart defect has influenced her career choices, and what the future holds for her... while waiting for a heart transplant.

If you would like to connect with Lorrie Hill, here is her Instagram handle:  @theheartofthejourney

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Transcript

Lorrie Hill:   0:00
I felt like I was staring down a lot of dead ends. And so when it came time to refer me to the transplant team and get rolling on that, it honestly opened up a little bit of a light at the end of the tunnel.

Anna Jaworski:   0:23
Welcome to the 15th season of "Heart to Heart with Anna," I am Anna Jaworski and the host of your program. Today's show is "Waiting for a Heart," and our guest is Lorrie Hill. Lorrie Hill is a 23-year-old female who grew up in Texas, mostly Houston, and Dallas. Currently she is finishing a Bachelor of Science in exercise physiology with a minor in psychology at Texas A&M. She has a single ventricle and has had three open-heart surgeries. Lorrie is now listed for a heart transplant and will be moving from College Station to Houston in preparation for graduate school and hopefully a new heart. Welcome to her to "Heart to Heart with Anna," Lorrie.  

Lorrie Hill:   1:10
Thanks, Anna. Thanks for having me

Anna Jaworski:   1:10
Well, I'm happy to have you here today, and I am so excited to be learning more about you and your heart journey. So let's start by having you tell us a little bit more about your heart defect and the surgeries you've had.  

Lorrie Hill:   1:23
Okay, like, you said in the intro, I do have a single ventricle, but it's not necessarily a true single ventricle. So I have a right dominant complete AV canal defect, along with double outlet right ventricle. So the double outlet right ventricle means that both the aorta and the pulmonary artery exit the heart from the right ventricle. And then, for the complete AV canal, it means instead of a mitral on the left and a tricuspid valve on the right, they fused together as one. So it's one common valve, and my particular valve is more faced towards the right, and my left ventricle is a lot smaller.

Anna Jaworski:   2:02
Ohhh. Okay, so it's not exactly hypoplastic left heart syndrome, but in a lot of ways, it's very much like that,  

Lorrie Hill:   2:10
Very much. So, for the AV Canal...is... there's normally an atrial septal defect and a ventricular one, and so the atrial septal defect allows blood to come in from the body in the lungs and then just all mix in the atria and then go down to the ventricles and then pump out through both of the main arteries. But, since both of the main arteries are next to each other, purple blood goes to both places at all times.

Anna Jaworski:   2:36
So you do have an ASD and a VSD?  

Lorrie Hill:   2:40
Yes.

Anna Jaworski:   2:40
Oh, okay. Wow.

Lorrie Hill:   2:41
Yeah. And so when I was born, I didn't necessarily need surgery right away. Because, like I said, the blood comes in, it mixes and it's still able to go out to the body and the lungs because both of the arteries are out of the right ventricle, which was the good-sized one. I was about 18 months when I had my first surgery. 

Anna Jaworski:   3:05
Oh. Wow.  

Lorrie Hill:   3:06
Yeah, And so when my surgeon went in... My cardiologist and my surgeon at the time, had drawn up big plans and they were going to go in and do a typical AV canal full repair, and since I'm 23, this was 1996.  

Anna Jaworski:   3:25
Mmm hmmm

Lorrie Hill:   3:25
The AV canal repair is one of the more complex surgeries because you have to separate a common valve and kind of reconstruct two valves. And they thought that my left ventricle might be at a place where they could have it hold its own there and then, just like, the natural stresses of blood, flow in the body would kind of help grow it. So my surgeon went in and he looked at it, and we kind of joke about it now, but he was like, "it was just a mess in there."  

Anna Jaworski:   3:57
Awe,  

Lorrie Hill:   3:58
There's these things called chordae tendineae, that help the valves kind of function. And they kind of keep the valves from prolapsing, so, like folding in on themselves every time they flap. And so the chordae tendineae normally have some normal attachments in the ventricles, and mine were just attached all over the place.  

Anna Jaworski:   4:20
Oh, wow.  

Lorrie Hill:   4:21
And so it made the valve separation really difficult. And in that area, you also have the AV node and the AV node is kind of the main driver of heart rate. If the sinoatrial node in the atrium gets knocked out, you can still technically live because the AV node is still intact and it's still taking over the rate of the heart. And so, with them operating on the valve, it wouldn't work super well because they could have a chance at messing up the AV node, and that would not be good.  

Anna Jaworski:   4:57
Right,  

Lorrie Hill:   4:58
So the surgeon couldn't really do anything that would be safe, so he put on a pulmonary artery band on the main pulmonary artery that comes out of the right ventricle and said to let me grow. And he did this because as you grow, if the aorta and pulmonary artery are right next to each other, as you grow, it's going to take more pressure to go out of the aorta, than to the lungs because the aorta is supplying the whole body whereas the pulmonary artery is just going to the lungs. So as I would grow, it would be easier and easier to send blood to the lungs and it would eventually flood the lungs. Drive the pressure's up and create pulmonary diseases.  

Anna Jaworski:   5:42
Right,  

Lorrie Hill:   5:42
He had to kind of put the band on there to encourage blood to go to the body. So I actually had the PA band for 12 years, and that's all I had.  

Anna Jaworski:   5:54
Oh, wow.  

Lorrie Hill:   5:55
Yeah. When I was almost 15, it was between middle school and high school, I had my second heart surgery. So we were kind of playing the 'wait and see' game most of my life because there wasn't an easy answer... and there still isn't an easy answer.  

Anna Jaworski:   6:14
Right.  

Lorrie Hill:   6:15
I mean, growing was kind of my best friend, because if you grow, you have more tissue to work with, possibly more options. As the anatomy grows, it kind of changes. So by the time I got to middle school, I would go to school and then come home and do a little homework and oftentimes crash before dinner because I was just so exhausted.  

Anna Jaworski:   6:40
Sure.  

Lorrie Hill:   6:40
I just didn't have the energy for it, and some days it was kind of even difficult getting through the school-day without wanting a nap, even though I've never been a napper. But, you know, it's just like that. Rundown feeling.

Anna Jaworski:   6:51
Mmm hmmm

Lorrie Hill:   6:51
So the summer between middle and high school. I had a bidirectional Glenn. We kind of went in with a plan to either go straight to the Fontan or the Glenn. But we chose the Glenn for that one. My sats raised a little bit, so before the Glenn, my oxygen saturations were probably around 82. Then, after I was able to get up to about 84-86 (wow.) at rest. Yeah, so it helped quite a bit. And then that held up well, for -oh, about- 4 or 5 years and then the summer between my sophomore and junior years of college, I had my third open-heart surgery. And so, my surgeon actually went in with three or four plans to kind of jerry-rig some things to maybe make things better,  

Anna Jaworski:   7:41
Mmm-hmm  

Lorrie Hill:   7:42
He didn't have a whole lot of hope going in, but we decided to do it anyway and see what would happen. And unfortunately, once he got in there, he realized that all of the options that we had planned for would have had negative outcomes. They would be too risky. So he kind of threw a few stitches in the common AV valve that I have, to hopefully decrease the regurgitation a little bit and raise sats. But, it didn't do a lot in the end.

Anna Jaworski:   8:08
When you and I were talking before the show, you had said that one of the possible options was a Fontan, and that's when they discovered that the Fontan was not really going to work for you, right?

Lorrie Hill:   8:19
Yeah. So for second heart surgery, like I said, they kind of went in with plans to go straight to the Fontan, and that's kind of their first plan. But then, once they got in there, between pressures and the way the valve was regurgitating the -common valve- they decided it just wouldn't have a good outcome...  

Lorrie Hill:   8:41
Right,  

Lorrie Hill:   8:42
...in the long term. So they just ended up doing the Glenn. And then for the third open-heart surgery that went in with, like, two plans. To either do a straight-up Fontan, and maybe since my body had kind of gotten used to a superior vena cava not going straight to the lungs (meant: got used to going straight to the lungs), maybe we could just add the second one and it would work. So that was an option, or to do like a Fontan with the mechanical valve, because we knew that the valve -the common valve- was not in good shape. And so, in theory, the valve would take care of the regurgitation. Um, allowing blood to kind of, like flow the way that it needs to flow. But again, this was dangerous due to the proximity of the AV node, and they don't have mechanical valves large enough for the space of the common valve. If that makes sense?

Anna Jaworski:   9:35
Yeah, that does make sense. So it sounds to me that, like you were able to go to school you were able to do your homework, Did you feel that you had a fairly normal childhood?

Lorrie Hill:   9:47
Oh, yeah. I had a very normal childhood. I grew up with two brother's, kind of did everything that they did. I was always active. I grew up in a really athletic and physically active family. My dad was a college athlete. One of my brothers is the current college athlete, and we would always go on walks and bike rides every night. We would go camping a lot each year. My parents kind of let me try anything I wanted to do sports-wise. So, I did summer swim team for many years, I cheered, danced, played soccer, played basketball, did bowling, and if I wasn't playing a sport, I was always on the sidelines at one of my brothers' games.  

Anna Jaworski:   10:28
Seems you were a cheerleader. 

Lorrie Hill:   10:34
Yeah, I was the Cheerleader. I wasn't always happy on the sidelines, but, you know, I was there nonetheless. So by middle school. I kind of stopped playing sports just because my family moved a lot growing up, and so, moving and going into a new group is always tough. Plus, I was having trouble keeping up with people, so I didn't play but I stayed active, like I was in a theater company so I did plays and musicals and stuff like that. And then in high school, I really wanted to be a part of athletics again without actually playing a sport. So I became an athletic trainer and absolutely fell in love with the field, and just like the way your body moves and how the body can heal itself. So in high school, I actually kind of decided I wanted to pursue physical therapy, and that's what led me to majoring in exercise physiology in college, which I still like to say it's kind of an irony that a single ventricle girl is majoring exercise physiology. 

Home tonight forever ad.:   11:41
 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.

Content Disclaimer:   12:16
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the 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.

Questions and Comments:   12:38
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 at heart to heart with anna dot com Now back to "Heart to Heart with Anna."

Anna Jaworski:   12:57
Lorrie, before the break, we were talking about your life as a child and an early adult, and it seems that your heart is not behaving quite the way we wish it would right now. So why don't you tell us what's happening with your heart right now?

Lorrie Hill:   13:10
Okay, so the main problem right now is oxygenation and O2 sats. So, I didn't really talk about this before the break, but they've always kind of been on the lower end. They've kind of gone up and down throughout my childhood. So my resting is around 80/82 ish. Some days, I can get up to like 84 if it's a really great day, but that's not very often. And so the main problem is that I tend to hit these, what I like to call 'energy walls' between noon and two. So it's like you're going through your day, going through your day, and then you hit noon and it's just like, you feel like you have run into a brick wall and you just don't have energy and all you want to do is go lay in bed and do nothing. Not necessarily sleep, because you're not tired, you're just exhausted.  

Anna Jaworski:   13:52
Yeah,  

Lorrie Hill:   13:53
And this actually happens whether I get 7 hours of sleep or 10 plus hours of sleep.  

Anna Jaworski:   13:58
Wow.  

Lorrie Hill:   13:59
I mean, the resting O2 It's kind of low, but the other thing is that it drops really quickly when I do really anything, I could be walking around my apartment and I'll go into mid to low 70s. And then, with sustained high (meant: low) intensity exercise, or physical activity, I see myself drop into the sixties and fifties, and so...

Anna Jaworski:   14:24
How do you know this? Do you have a pulse oximeter?

Lorrie Hill:   14:26
Yeah!  

Anna Jaworski:   14:27
Oh, okay!  

Lorrie Hill:   14:28
I have one my spot check with. Plus, I've done a couple of six-minute walk tests for transplant evals, and they've caught it on that, too.  

Anna Jaworski:   14:38
Okay, okay.  

Lorrie Hill:   14:38
So, it's not just me catching it.

Anna Jaworski:   14:41
Well, I mean, you're so precise with the numbers I thought "Wait a minute!". Most people don't know exactly what their oxygen saturation level is, but that's quite a big difference.

Lorrie Hill:   14:50
Yeah, and it takes the body a lot of energy to constantly be reoxygenating itself after just moving around.  

Anna Jaworski:   14:58
Right.  

Lorrie Hill:   14:59
So that's kind of why, we think, I hit these energy walls a lot.  

Anna Jaworski:   15:03
Yeah,  

Lorrie Hill:   15:04
And so I know, a lot of people will probably listen to this and be like, "Well, why doesn't she just get on supplemental oxygen? It will solve a lot of problems." The short answer is, "No, it won't," and "trust me, we've tried." Because, in the end, my low O2 saturations are not a perfusion problem. It's actually a circulation transportation problem, because on my last cath, that I had two years ago, my O2 sats in my lungs were around 97/98% which is completely normal. But then, when the blood gets to the heart and it mixes together, that's where you end up with about the 82 sat.

Anna Jaworski:   15:43
Okay, so the problem is it because of your physiology, you still have a lot of mixing of the blood. So...  

Lorrie Hill:   15:49
Right,  

Anna Jaworski:   15:50
...the blood in your lungs is nice and oxygen-rich, but the blood that's actually going out to your body not so much,  

Lorrie Hill:   15:57
Right, right.  

Anna Jaworski:   15:58
Okay.

Lorrie Hill:   15:59
And so another thing that people like to talk about when they talk about heart failure and transplant is the ejection fraction, and so growing up my ejection fraction was always pretty normal. My heart doesn't really have trouble pumping, and so ejection fraction, for those that don't know, is pretty much the percent of blood that is pumped out of the ventricle of the percent that it's brought into the ventricle from the atria.

Anna Jaworski:   16:27
So what's a good ejection fraction?

Lorrie Hill:   16:30
I'm pretty sure normal runs around 60.

Anna Jaworski:   16:33
Right. That's what I was thinking too.

Lorrie Hill:   16:35
Yeah, it's like 60/65, once you get older, it's fine if it drops into the 50s. Healthy people, like athletes, tend to go like 68/70% if you're really well trained.  

Anna Jaworski:   16:47
Oh, wow.  

Lorrie Hill:   16:48
Yeah. And so mine was always around 50/55 ish. It was pretty stable.

Anna Jaworski:   16:54
Yeah, that sounds pretty good.

Lorrie Hill:   16:56
Yeah, and so it was always slowly decreasing. But we think part of the reason why I've slowed down, especially in the last six months, is because as of August, and it was again kind of confirmed in January, my injection fraction's around 40 now. Which from a heart failure perspective that ejection fraction isn't terrible. A lot of times people in the heart failure world are like "Oh, yeah, I haven't ejection fraction of 25 or 30 or less than that." So it's not awful. It is low, but not terrible. But that, combined with the dropping 02 sats, my body just doesn't want to deal with it anymore,

Anna Jaworski:   17:37
Right, right. So does the dropping of your ejection fraction also correlate to the decrease in oxygen saturation level?  

Lorrie Hill:   17:47
A little bit, and honestly, it probably correlates a little bit more to the way it drops quickly with activity. Because ejection fraction is essentially how strong your ventricle is and how much blood it can pump out. So, if it's a little less strong it's not going to be able to pump out quite as much blood.  

Anna Jaworski:   18:08
Right.  

Lorrie Hill:   18:09
Also, when you exercise and are being active, blood is supposed to go to your brain, and your skeletal muscles, and skeletal muscles take a lot of blood and a lot of oxygen. And so that's why I also just tanks when I walk or do anything, and then it kind of comes back up. It comes up quickly, though.  

Anna Jaworski:   18:31
Well, that's good, and I think that's one of the reasons why your doctors have talked to you about transplant. So why don't you tell us when it was first brought up to you and what the hope is if you do get a transplant?

Lorrie Hill:   18:46
Yeah, I feel like the first time it started entering conversations was probably a few years after I had the Glenn.

Anna Jaworski:   18:55
Oh, really? Okay. Way, back then.

Lorrie Hill:   18:57
Kind of as something to just kind of keep in the back of our mind. So, not prominent on the table, but maybe as a, "someday we might need to do this."  

Anna Jaworski:   19:06
Okay,  

Lorrie Hill:   19:07
Because at the time of the Glenn, they were like," Well, there's no way we could do a Fontan kind of a thing," so it kind of the next option if we would ever need it.  

Anna Jaworski:   19:15
Okay,  

Lorrie Hill:   19:15
But the first serious conversation I had about it was actually with my surgeon when I was in the step-down unit after my most recent open-heart surgery. So about 2.5 years ago. So after that surgery, things didn't go well. They didn't really want to tell me because they didn't want to upset me, and so I felt like I wasn't getting clear answers. I was getting frustrated about that, so I requested to talk to my surgeon. And so he came in and talked about risk-benefit and just kind of explain why things didn't work and how he was pretty much done working on me surgically, because there was nothing else to do, and he was like, "If this surgery doesn't work. It's probably time to look into transplant."

Anna Jaworski:   20:03
Wow. How did that make you feel? Because it seems to me, you were already sensing something was off.

Lorrie Hill:   20:11
Yeah, I was already sensing something was off. I'm a very intuitive person, and I'm a very logical person. And so I definitely overthink things a lot as well. I've never been super upset about it or shocked by it. or really anything like that, and I think that is because it was kind of put on the back of the table so long ago after the Glenn, as just something to keep in the back. So I've never had a time where I've processed a lot of it all at once. It's just kind of been in pieces.  

Anna Jaworski:   20:47
Yeah.  

Lorrie Hill:   20:49
A lot of times when I process through research and through learning more about it.

Anna Jaworski:   20:53
Yes. Well, and it doesn't hurt that you're working on a bachelor of science...  

Lorrie Hill:   20:58
Right.

Anna Jaworski:   20:58
...with exercise tolerance. So you've done a lot of anatomy and physiology, haven't you?

Lorrie Hill:   21:03
Right. Yeah, for sure. And honestly, I think having a heart defect helped better in anatomy and physiology than some of my peers because I've kind of known how things don't work. So it's easier to learn how they are supposed to work.

Anna Jaworski:   21:15
This is also very pertinent to you. It's important for you to understand all of this. So what does being on the transplant list mean to you now regarding how you live your life?  

Lorrie Hill:   21:27
I have honestly just kept living my life the way I've always been living my life. So for the few years before this, and being listed and going through the actions of getting on the list. I felt like I was staring down a lot of dead ends, and so when it came time to refer me to the transplant team, and get rolling on that, it honestly opened up a little bit of a light at the end of the tunnel.  

Anna Jaworski:   21:55
Sure,  

Lorrie Hill:   21:56
Because the dead ends, is like, there wasn't any way to make my stamina increase, or O2 sats better, or make the way I feel better...  

Anna Jaworski:   22:06
Sure,  

Lorrie Hill:   22:07
...and there just wasn't a whole lot of ways to improve quality of life. And I'm not saying that my quality of life is terrible and I've learned to live and thrive within my capabilities. But it's always nice to kind of have a way to increase those capabilities have that hope for the future, in a way. And so I feel like being listed for a transplant has opened up those possibilities. And that being said, I want to put out that transplants are in no way a fix for everything. Transplant really truly does just trade one disease of like heart failure, low saturations, having no energy; for a disease of being on immunosuppression drugs that come with heaps and heaps of medication for life, ...  

Anna Jaworski:   22:52
Sure,  

Lorrie Hill:   22:53
...the side effects of those medications, you have to essentially pretend that we're in this coronavirus epidemic all the time for avoiding germs. There's always possible rejection and there's always the potential need for a retransplant, so it's scary, but it offers a lot of hope.

H2HwM ad:   23:14
"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.

Anna Jaworski:   23:47
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:   24:23
In the second segment Lorrie, we were talking about the current state of affairs regarding your heart function. In this segment, I'd like to talk about your future. So let's start by talking about college considering right now it's March 2020 and while we're recording this episode, the whole world is concerned with the coronavirus. What has this pandemic meant for you?

Lorrie Hill:   24:46
This pandemic... As we've mentioned I'm supposed to be graduating in May. College has been one of the best experiences of my life. I've actually extended my college career because of medical surgeries, and so I was really looking forward to having this be my last semester, and I'm currently in an internship, and then graduating and moving to Houston and getting ready to start graduate school. But now, this coronavirus has come to be. And the world, or at least America kind of freaked out while I was on my spring break and...

Anna Jaworski:   25:22
(Laughter) That's true, it did happen to a lot of people on spring break.  

Lorrie Hill:   25:27
Yeah. So my roomates and I were actually vacationing. in Galveston, Texas. So we were staying at a friend's beach house, and we got the news that A&M had moved all of their classes online for the rest of the semester, while we were on the beach.  

Anna Jaworski:   25:45
Oh, wow.

Lorrie Hill:   25:45
That was interesting. Yeah, it's interesting because my three other roommates, one of them was already graduated, and then two of them are student teachers. So we're all kind of in this internship phase. We're not really taking classes...  

Anna Jaworski:   26:00
Ohhh. Yeah.  

Lorrie Hill:   26:01
...we're like working.  

Anna Jaworski:   26:03
Oh, my goodness.  

Lorrie Hill:   26:04
So obviously they can't go back to school and work because schools have been canceled as well. And the lab that I was working in was opened, but since all of the stay at home precautions have gone into place, they have close all the labs too. So even if I wanted to go and I couldn't. But since we got back from Galveston, I've kind of just stayed in my apartment laying low. I know if I would get this virus, it would not be good. So I'm just trying to stay as far away from people as I possibly can right now and just going forward with it. So graduation is not happening, like the ceremony. We're going to be mailed our diplomas. Which...

Anna Jaworski:   26:49
I'm sorry!

Lorrie Hill:   26:51
It's okay. Honestly, it was a four-hour ceremony at 7 p.m. I was excited about it because my parents were excited about it and I had a whole bunch of family coming in, But four hours at 7 p.m. It's

Anna Jaworski:   27:07
That's exhausting for you.

Lorrie Hill:   27:08
Yeah, it really is. I wasn't super looking forward to it. So it's okay. For my internship-wise I'm just finishing up a binder and going to turn it in and call it done.

Anna Jaworski:   27:19
It's good that at least it hasn't derailed your graduation. And I understand you have some exciting news regarding your future education. So why don't you tell me what you plan on studying in graduate school and why,

Lorrie Hill:   27:34
Around October, I got into the University of Texas Health Science Center in Houston's School of Public Health, and I will be studying epidemiology of all things, earning a master's in public health for next about two years, and I wanted to do epidemiology because you can kind of study anything in epidemiology. And I know epidemiology is a term that has been thrown around a lot, especially in the media lately, but for those that don't know what it means. An epidemiologist, yes does study epidemics, but breaking that down a little bit, they really study the prevalence in the spread of disease situations or things that impact diseases. So I have personally, due to my history and also my academic history, of studying exercise physiology, I have always been interested in the area of cardiovascular disease and the interplay with obesity and inflammation and how everything reacts to each other and how these things are comorbid in a lot of the population.

Anna Jaworski:   28:52
That's amazing. And here you are just getting ready to start studying that, and we're all living with a worldwide pandemic. Which, ...  

Lorrie Hill:   29:01
Oh, yeah! It is crazy!

Anna Jaworski:   29:02
...just blows my mind. Who knows? You might be one of the scientists who helps us to learn how to live through this pandemic, and any future pandemics that come along. So I think it's great that you're going to be studying that I'm just amazed that that's where you're life journey has taken you

Lorrie Hill:   29:26
Yeah! It definitely come there through a roundabout way, too. It's definitely not what I set off in college to do. So it's kind of funny that that's where it had\s ended up in the midst of where we are now

Anna Jaworski:   29:39
Absolutely. I think you have a chance to really make a difference in the world, Lorrie.  

Lorrie Hill:   29:44
I hope so  

Anna Jaworski:   29:45
Before we conclude the show, can you share any helpful advice that you've gained while being on the transplant list? Like, what do you think others should know if they're thinking that they might need a heart transplant?

Lorrie Hill:   29:58
I've been thinking about this question a lot, and I think one of the things I would advise people to do is to kind of think about where they are, assess their health situation with their team, and really think about the things that transplant involves The whole waiting game and all of the medications afterward, and know that it can take a long time to get a transplant. I'm not even going to try to get my hopes up for like, 18 months, and so it's going to be awhile. But for me, that's okay. I'm young, I'm relatively stable right now. Another thing to think about is when you want to get on the list. So if you've been told you're going to eventually need a transplant soon, think about whether you want to try to get on the list sooner, and kind of do a lot of waiting on the list or wait off the list. Because the way that its kind of been explained to me, and I've done research on, there's a lot of times heart failure in congenital heart patients is really, really gradual, almost to the point where you don't notice it or maybe you're noticing a little bit. But then you kind of hit a threshold and things progressed quickly. And so, if you wait on the list, pretend that every day you're on the list, you get one point. And so the longer you wait on the list, the more points you acquire. For adult heart transplants there are seven statuses. Status seven is kind of a pause button, so you can go into status seven if you would like (or need) to go out of your hospital distance radius, or if you get too sick or too well and can't be active on the list. And then, status one is like you needed the heart yesterday and it kind of goes down the list from there. So if I'm on status four and I accumulate, let's say 70 days, so 70 points, and then something happens Aand I have to move up to status three, I'll be on status three, and above anyone who has fewer than 70 points.  

Anna Jaworski:   32:10
Oh, really?  

Lorrie Hill:   32:11
Yeah. So then if you're waiting off the list and then something were to happen, and you were to jump on as status three. You'd be status three, but you would start your day accumulation there.

Anna Jaworski:   32:26
Right. So they'd be below you even though they were at the same congestive heart failure level.  

Lorrie Hill:   32:33
Mmm-hmm

Anna Jaworski:   32:33
Wow. So there is an advantage to being on the list

Lorrie Hill:   32:38
A little bit. Yeah, and that's kind of the way I understand it. It could be different. I don't know, but I've done quite a bit of research and talk to my team about it quite a lot. So I think that's how it works.

Anna Jaworski:   32:51
Well, I am hoping to follow you. You and I are Facebook friends, and I'm hoping that you'll come back on the show in the future and tell us how things were going. Lorrie.

Lorrie Hill:   33:01
Yeah, for sure!  

Anna Jaworski:   33:02
Well, thank you so much for coming on the program today. Lorrie, you opened my eyes to so many things.  

Lorrie Hill:   33:08
Thanks for having me. It was a lot of fun.

Anna Jaworski:   33:11
That does conclude this episode of "Heart to Heart with Anna." Thanks for listening today. If you enjoyed listening to this episode, please consider becoming a patron. Just go to www.patreon.com/hearttoheart and pledge a monthly amount to support our program. It only takes a few minutes to make a big difference for the cost of a pizza. You can help us continue to provide great programming for the CHD community and you can be a part of some special Patreon only programs that we'll be recording. In April 2020 will be recording a special patron only program memorializing David Franco. If you have a story that she would like to share about David then, please become a patron and you can join us. So I hope all of you have a great day and remember, my friends, you are not alone.

H2HwA sign-off:   34:02
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.