Still Waiting for a Heart

What is it like to be an adult with a congenital heart defect whose heart has given out? What does a typical journey on the road to transplant like? Does it look anything like what we see portrayed on television or in movies?

Lorrie Hill grew up in Texas, mostly Houston and Dallas. She was born with a single ventricle heart and has had three open-heart surgeries in her 24 years, including a pulmonary artery band and bidirectional Glenn shunt. She was listed for a heart transplant on February 24th, 2020. Since then, she graduated with honors from her undergraduate university and moved to Houston to be closer to Texas Children's Hospital where she will receive her transplant. She has even begun her Master of Public Health epidemiology graduate program. She talks to Anna about life now and her hope of receiving a new heart.

This is a follow-up episode to the one Lorrie did in March 2020. There is also a transcript of the program available.

Here are the links to the websites Lorrie mentioned in this episode:

Donate Life
UNOS Transplant Living
Organ Procurement and Transplantation Network

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Transcript

Lorrie H: 0:00

When things gradually get worse and your body's gradually compensating, you're dealing with the worst outcome a lot better than somebody else would be, who hasn't had that compensation. And so it's a lot harder to move forward on the list or even just get priority when maybe you should be at a higher priority.

Anna Jaworski: 0:27

Welcome to "Heart to Heart with Anna." I am Anna Jaworski, and the host of your program. For those of you who do not know me, I am the mother of a single ventricle, adult Heart Warrior. Alexander is now 26 years old, and he's doing very well. He is my inspiration and the reason I am the Host of your program. Today's show is entitled 'Still Waiting for a Heart' and our Guest is Lorrie Hill. My loyal listeners will remember Lorrie from last year when she appeared on the program to talk about her need for a new heart. Lorrie Hill grew up in Texas, mostly Houston and Dallas. She was born with a single ventricle heart and has had three open-heart surgeries in her 24 years, including a pulmonary artery band and bi-directional Glenn shunt. She was listed for a heart transplant on February 24, 2020. Since her last appearance on our program, she graduated with honors from her undergraduate university and moved to Houston to be closer to Texas Children's Hospital where she will receive her transplant. While in Houston waiting for her heart, she is also working on her Master's of Public Health epidemiology graduate degree to help pass the time - like she doesn't have enough stuff going on! She's also a Volunteer for Hearts Unite the Globe and helps us with script writing and with transcripts. It's so wonderful to have you back on the program, Lorrie, welcome back to "Heart to Heart with Anna."

Lorrie H: 1:55

Thanks for having me.

Anna Jaworski: 1:57

I'm happy to talk to you, Sweetie, I always enjoy talking to you and working with you. And here we are. I cannot believe it was February since the last time you were on the program! When you were on the program before, it was pre-COVID-19. So for those Listeners who haven't had a chance to listen to that episode, can you briefly tell us a little bit more about your heart defect, the three surgeries you've had, and why you're on the transplant list?

Lorrie H: 2:25

Yeah, of course. So I was born with right dominant complete atrioventricular canal defect along with double outlet right ventricle. My heart is a single ventricle, it's committed to the right side. And growing up, my parents and doctors, we all played a lot of games (of) wait-and-see. So I didn't actually have my first surgery until I was almost two and the surgeon went in planning to do a full bi-ventricular repair. And unfortunately, he was not able to do that because my common valve attaches all over the place. And so instead, he just placed a PA band. And we waited and see how long that would last. For me that actually lasted about 13 years. And when...

Anna Jaworski: 3:10

That's amazing! Isn't it amazing that it lasted that long?

Lorrie H: 3:14

Yeah, it's still in there. And it's definitely... it's still working. But when I was 14, I had the Glenn shunt to just help bring back my saturations. They were getting a little low. And so that one also got me through about six years. And that was pretty good. And I felt quite a bit better after the Glenn. And then I was able to graduate from high school and I went to college. And I went to a very large state university in Texas, and I was walking about three-to-five miles a day and my heart was just not keeping up. And so between my sophomore and junior years, I had my third open-heart surgery. Going into the surgery, my surgeon had about three-to-four plans that he might try, and he was hopeful they would work. Unfortunately, none of them were possible. So he kind of threw a few stitches in my common valve to try to reduce some of the regurgitation and close me back up. In the long run, it didn't really do a whole lot. But it did help me out for three years. And in August of 2019. I was referred to transplant. The main reasons that I've been listed for transplant is because of oxygen desaturations. I sit around 80 and I'll go as low as the 50s when I'm up moving around. Also my heart muscle has slight problems contracting and relaxing all the way. So that's also causing some issues.

Anna Jaworski: 4:49

It's surprising to talk to a single ventricle Heart Warrior who hasn't had the Fontan. I've actually had a few people - those of you who are loyal Listeners have heard Kathy Ware talk on my program and Laura Ryan. They stand out in my mind as two ladies who, like you, Lorrie have single ventricle hearts but have not had the Fontan operation. Was the Fontan too risky for them to do when they went in that third time?

Lorrie H: 5:17

Yeah, for the most part, and also for me they would have had to replace the whole common valve that I have. But they don't have any mechanical or prosthetic valves that are that large, or they would have had to put in two smaller valves, but two of them wouldn't have fit correctly. And there's just a mess. So it would have been a rough outcome for the Fontan. So they decided that was not the best option.

Anna Jaworski: 5:41

Okay, so now you're being listed for a heart transplant. And when you were on the program last year, you talked to us about how the days on the list are counted. So can you tell us how many days you've been on the list now and whether or not you've moved up or down on the list?

Lorrie H: 5:59

Yeah, so just to give Listeners perspective, we're recording this on December 30th of 2020. And as of today, I have been on the list for 309 days. I've accrued time so I have moved up within Status 4. I'm still listed as Status 4. My team and I spent a lot of the fall trying to get me bumped up to Status 3. And we learned recently that UNOS would not accept the appeal to do that. So I am let Status 4 and the wait just keeps rolling along at this point.

Anna Jaworski: 6:37

What amazes me is that you have since completed your first year of graduate school where you earned very good grades, top grades, right?

Lorrie H: 6:47

Yes, yes.

Anna Jaworski: 6:48

All A's. How are you doing that when you have such low saturation levels?

Lorrie H: 6:54

A lot of it is just as CHDers, our bodies kind of compensate. And since things gradually get worse, our bodies have the time to gradually compensate. And in a way, that's really helpful. But it's also not super helpful when it comes to waiting for a transplant. Because when things gradually get worse, and your body's gradually compensating, you're dealing with the worst outcome a lot better than somebody else would be, who hasn't had that compensation. And so it's a lot harder to move forward on the list, or even just get priority when maybe you should be at a higher priority.

Anna Jaworski: 7:33

Right. And that's what Dr. Zaidi and I talked about last year. And he explained it very well too, you just did a beautiful, eloquent job of explaining why it's harder for you adult congenital heart patients than it is for somebody who wasn't born with a heart defect. It's very complicated when you're looking at transplantation. And you're looking at people who have been dealing with heart defects all their lives. And so I really appreciate you coming on the program to tell us your perspective. One of the other things that was interesting, since the last time I talked to you is that all of a sudden, shortly after you were on the program last time, the whole country, and in fact, for that part, mostly, the whole world,has kind of been on lockdown/quarantine. What did that mean for you regarding school?

Lorrie H: 8:22

So thankfully, I am going into the public health field. My school is very cautious about this virus. And we want to set a good example for other institutions and workplaces. So all of my classes have actually been moved online. I was able to take all of my classes from the comfort of my own couch, which I know for some people is very difficult to find the motivation and to find the focus. For me it was a huge blessing in disguise, because as the semester has gone, I've declined a little bit more. And there were definitely quite a few days I was like if I have to go into a building, I will not be able to go to class. So honestly the online classes have been fantastic for me and I'm really looking forward to continuing them in the spring.

HUG Info: 9:18

"Heart to Heart with Anna" is a presentation of Hearts Unite the Globe (HUG) 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 www.CongenitalHeartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Rejoiner: 9:59

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: 10:18

In segment one, we brought everyone up to speed on your congenital heart defect and transplant listing for those who have not listened to the Season 15 show. Lorrie, now can you tell me about what you've been up to since then? We already covered that she started grad school. But I know that there have been some other changes too. So tell us what you've been up to.

Lorrie H: 10:38

Yeah. So obviously, in order to start grad school, I graduated undergrad, like we said in the bio back in May. And I finished an internship in that timeframe before graduating, and it was almost like I went away for spring break. And then I didn't really go back. So that was an interesting time trying to figure out what I could do to keep on track. But I graduated. So that's all that matters at that point. And then the weekend that I graduated, I also moved to Houston to be closer to Texas Children's as we also already mentioned, but it has been so great living so close to my hospital. This is the closest I've ever lived to my hospital even though I grew up in Houston. I can make it from door to door in eight minutes.

Anna Jaworski: 11:25

Oh, wow.

Lorrie H: 11:26

It's fantastic. Unless there's a wreck or detours or whatever. But yeah, it's pretty great. I've also started and finished my first semester of grad school. I've also spent lots of time juggling school with transplant stuff in order to kind of prepare me to put in this appeal for Status 3 that we tried. I had a whole separate appointment days, I had a cath and another surgery and MRIs and CAT scans and all kinds of stuff. It was quite a feat to try to juggle everything. But I managed and it was kind of fun, a little stressful, but also kind of fun.

Anna Jaworski: 12:08

I think it's your positive attitude that's allowed you to go as long as you have Lorrie. You and I have met in person and I was a little stunned by how purple your lips were. So I know what you were saying that your SATs drop when you are walking around. When we met, we actually met at College Station at the George Bush Museum, which was really fun. And we had a chance to walk around. But I could tell that you were desat-ing quite a bit with all that exertion.

Lorrie H: 12:37

For sure.

Anna Jaworski: 12:38

Yeah. And it's got to be tough when your oxygen saturation level is lower like that to have the energy to keep going.

Lorrie H: 12:46

Yeah, it definitely is. I want to go to bed around

8: 12:50

30 every night. I don't because I have to take my nine o'clock medications and I'm afraid I would sleep through an alarm at that point. But yeah, what I've done schoolwork or done dinner whenever I am on the couch for the rest of the evening. And...

Anna Jaworski: 13:02

Sure

Lorrie H: 13:03

I have to go to bed, because I just don't have the energy for things. I do still work out. And that is a really important thing for transplant patients and really for any CHDers, but it's just important to stay as active as possible. And so I really do spend the energy to do that as well.

Anna Jaworski: 13:21

I love that the very first show that you came on"Heart to Heart with Anna," you actually talked about that. And you even wrote about it for a book that I hope to be publishing this year. We've been working on it for a couple of years now. We still haven't finished yet, but I'm hopeful that this year is gonna be the year that we finish it. Once upon a time you were studying kinesiology. Isn't that right?

Lorrie H: 13:44

Yes. Yes, I was. And I really loved it. I actually originally started my kinesiology degree to be a Doctor of Physical Therapy and work at a children's hospital, helping kiddos recover from heart surgery and kind of help progress CHD and exercise understanding and kind of the field of it, trying to establish different recovery protocols and stuff like that. Unfortunately, with my failing heart, that was not really possible or feasible. But I was also always interested in research and healthcare and all of that. So that is what led me to public health.

Anna Jaworski: 14:22

It's been interesting to follow your college career path because it has made a few changes, but you changed to epidemiology right before the pandemic hit. And I remember talking to you at that time. How fascinating it was for you that what you were studying in school, we were seeing play out on a worldwide platform.

Lorrie H: 14:44

Mm hmm. Yeah. And actually, I wasn't quite studying it then, but I was getting ready to, and it was just really exciting because as I went through classes this semester, I was in epidemiology classes. And we had the journal clubs over COVID papers. It was really neat to see for sure

Anna Jaworski: 15:00

That is so fascinating. You and I have talked so much, Lorrie, because I love it that you're a Volunteer, we get a chance to meet when we're not even on the air. And during one of the times that we were meeting and talking, you told me a little bit about what happened to you, when you went to Galveston. What was it like being on "spring break," then, pretty much not going back to school? What was that like for you?

Lorrie H: 15:26

It was a wild day, I was down there with my roommates. And we were hanging out with some family friends, there was a group of about 25 of us, which is mind-boggling now. And we were all just hanging out at the beach having a really great time. In the middle of the day, about every half hour, somebody else's school would be canceled or delayed. And we had about five different schools represented. So it was wild, after spring break, we went back to College Station, but we didn't really do anything. I kind of sat in my apartment there for thankfully, it was only like two months, because I graduated in early May. But it was still a wild thing to try to figure out what to do, when you didn't really have anything to do. And a lot of people experienced the same thing. It's really hard to go from doing everything all over the place to being told, z'Oh, you probably shouldn't leave your house" and try to figure out ways to entertain yourself or get things done at home.

Anna Jaworski: 16:29

Right! Were you concerned that maybe you wouldn't graduate?

Lorrie H: 16:32

In a way... Yes. But thankfully, in my last internship, I was working in a exercise physiology lab, actually. And so the lab kind of had to shut down too. And so they sent me data entry stuff to do occasionally, and they were like, "Don't worry about it, you're gonna graduate. It'll be fine." So thankfully, I had really great professors and mentors I was working with, but it was scary for other people, I know who weren't in my same situation.

Anna Jaworski: 17:07

Sure, this whole COVID year has just really made things very challenging for a lot of people, especially for students. And I'm sure everybody is looking forward to when life is going to say more back to normal. But let's talk about what your plans are regarding transplant because you and I have had a chance to talk a little bit. And I know that you might end up doing something a little bit more dramatic just to see if you can get moved up on the list. Can you talk to us about that?

Lorrie H: 17:41

Yeah, so it wouldn't be solely to be moved up on the list. But I'm getting to the point in the transplant process, where we are pretty much out of"easy options" to try - being that pretty much different medications and stuff. One of my issues is I have really low blood pressure and a lot of these heart failure meds, one of the side effects is it lowers blood pressure because it takes pressure off the heart. But when you already have low blood pressure, that's not super good to do. So one of the things we talked about when we figured out that going at Status 3, while I was out-patient would not work is figuring out something we could do in-patient at some point. And so at some point in the near future, maybe next couple months, I might be admitted to start a medication called milrinone, which is a continuous IV medication that helps your heart contract and relax better. And when you're on a continuous IV medication, you have to be in the hospital and per UNOS, you will get moved up to the Status 3 once that happens. Galveston is my family's vacation spot. So we actually went to Galveston, again for Christmas. And I actually got a little bit better, maybe slightly, it might just be a morale boost, still riding it out to see what it is. But I'm feeling slightly better than I did before. And so we're just kind of playing this by ear, knowing that going in-patient and starting this medication option, but not knowing for sure when that will happen or when I feel comfortable doing it. There's a lot of pros and cons to weigh out. It's another medication that will impact blood pressure so other meds will have to be adjusted. And then also, in these COVID times that are unusual to other times, the visitation policies are very restricted. Thankfully, I go to a children's hospital so they allow two caregivers to be registered to you to come visit when they want to. I think they have to be in 24-hour shifts. But that is a pro, but I can't have any other friends or siblings or anyone else come and visit me. But we'll just have to see how things happen, how things progress. Nothing is really going to get better at this point. So we're just kind of seeing how the decline keeps going. And if it gets much worse, or if it goes down quicker, I will probably just admit myself,

Content Disclaimer: 20:29

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.

Anna Jaworski: 20:49

Lorrie, in the second segment, you pretty much brought us up to date on what's going on as far as your heart and possibly going into the hospital. But I know you and you're like me, you like to do research. So why don't you talk to us about some of the things that you've learned while you've been waiting to get your heart?

Lorrie H: 21:12

Yeah, I've learned a lot. I've learned that this process is not easy. It's not for the faint of heart, I guess, pun intended. And you never really know how it's gonna go. There's no promises with it. There's no guarantees. One of the ways that I kind of help myself cope and calm myself down, is doing research. And so when I went for my very first transplant visit last September 2019, they gave me this giant binder of information. And of course, I read that, but on one of the pages, it had lists of resources to check out online, and I've gone through quite a few of them. And I've found a couple of other ones that are my own. Something to kind of keep in mind as I talk about some of these is that I am pretty much a scientist, I read scientific papers, and I understand them. And so some of these things might not be appropriate for everybody. But I tried to throw in resources that I think anybody could benefit from...

Anna Jaworski: 22:17

I don't want anybody to have to worry if you're driving right now. Or if you're exercising, I don't want you to have to worry about stopping and picking up a pen and writing this down. Lorrie has been kind enough to tell me she's going to share her notes with me. And it will all be in the Show Notes and the Show Notes are the description of the show. So don't worry about taking notes, you can just enjoy Lorrie telling you about what she's learned. And then if you want to learn more, you can just click away in our show notes.

Lorrie H: 22:45

So the first ones are great resources for potential recipients, recipients, donor families, and just the general public DonateLife.net is really great for general information. And it's the organization that does a lot of the registering donors. When you go to a DMV and you check the I-want-to-be-a-donor box on your license, it sends that information to Donate Life. And they're the ones that handle the main registry of donors. And then another great one that I found is called TransplantLiving.org. And this one has more in-depth information. It's very understandable. I really like how this website is set up. And they just have a lot of great educational tools. If you want to learn about the transplant process, it's not just heart transplants, you kind of have to navigate around to see different organs and things like that. But they have information anywhere from the general public who just wants to see what it's about to people who are waiting. They have statistics on the different people waiting and what the wait could be like and things like that. If you're like me, and you're into more of the nitty gritty stuff, the US Department of Health and Human Services, runs an organ procurement and transplantation network. The website is optn.transplant.hrsa.gov. A lot of this website is geared more towards the transplantation professionals. So your teams, your doctors, your nurses, but they do have a lot of transplant education tools under the Learn tab. If you click on that they have lots of different options. You can learn about how different organs are transplanted. And some of the matching requirements. And one of the tools that I have found really helpful or even really fun to play around with for me is their data. And so if you go to the Data tab, you can click on view data reports and it will pop up a page where you can pretty much look at transplantation data by state, region, center. And so once you click the first option, it'll take you to another page. And you can click another parameter to search by. This database pretty much lets you search by four different parameters. And it's really cool to see who's waiting, what kinds of transplants have been done in your area, and things like that. Of course, there's no identifying information. It just counts.

Anna Jaworski: 25:28

Sure.

Lorrie H: 25:29

But it's still really fun to play around with.

Anna Jaworski: 25:31

That just fascinates me that all of that kind of information is out there. I'm glad that it's anonymous. But still, it must be a relief to you in some ways to see how many people are listed what kinds of matches are happening, what areas tend to be hot right now, hopefully, Texas where you are located there is more organ procurement. I don't know. I don't know. But it's helpful to at least be able to quantify something because it feels like so much of this waiting is subjective. It's not objective at all.

Lorrie H: 26:04

Right, yeah. And I mean, another important thing to remember when you're trying to look at these websites, is that even though they're navigable, and they have great information, you have to know how to read the information in order to make sense of it. It's not hard at all, but you just have to have that mindset for it. And though this information is very insightful, it can also be a little overwhelming. And I like to put that out there for people because it can be overwhelming when you're looking at Status 4 in Texas and there's 139 people in it. You might be able to get a good feel for if you're listed where you're at on the list. But it's still pretty vague. And the whole transplant process in general is pretty vague. You never know what's going to happen. And what's going to come up when my suggestion religious Try not to look at the list too often, if you are listed, it can really kind of put you in a paranoia that's never mentally healthy. And also another way that it kind of adds more ambiguity is they put things in groups -waiting time is one of the parameters I like to look at. And that's grouped from months to years. You never know where you're in in that. And so in a way, it's kind of comforting to have that ambiguity, because it kind of helps you not worrying about it as much, honestly. You don't necessarily want to check it all the time. Because you know, you're still going to be in that one category. So yeah, I think with these, with the knowledge comes great responsibility, and you just have to make sure that you're using it in a healthy way.

Anna Jaworski: 27:41

That's so much helpful advice. If you could give us just one more piece of advice. For somebody who's thinking about going on the transplant list, what do you think that they should know, before they make that decision?

Lorrie H: 27:55

Before making the decision to go on the heart transplant list, I think you should really think about what it means for yourself and your future. Know that transplant is not a cure - it is switching one disease for another disease. There can be complications after the surgery quite often, there can be complications down the road, the average heart lasts about 10 to 15 years at this point, it's getting better, but it's not quite there. And you just have to think about if you want to take all the medications that are required, and do all the follow-up work, and really have the energy and the gumption to take care of that organ that you've been gifted.

Anna Jaworski: 28:39

Yeah, I think that's really, really good advice. Have the doctors offered you any kind of mechanical support, like a ventricular assist device or since you're a single ventricle heart patient is something like that just not even an option for you?

Lorrie H: 28:57

Doctors are putting ventricular assist devices in single ventricles more and more; it's becoming more commonplace. For me, unfortunately, it's not really an option. Because just like what has caused me to not be a Fontan candidate, I have the common valve that just connected all over the place. And it's really leaky. And so even though I kind of have two ventricles, there's no separation and there's one valve. So at this point, I have not had the subject of an assist device brought up to me, thinking logically, I'm not 100% sure if it would be an option. But for other simple ventricles, I know it hasn't been an option.

Anna Jaworski: 29:42

Well, that's good to know. So that might be something, my dear Listeners, if you're listening to this, and you're wondering, 'Oh, my goodness, what about heart transplant? If I start to have problems, what should I do?' Please talk to your doctors about these other mechanical devices that may be helpful. I've talked to some people who have decided not to go the transplant route, but they have taken a mechanical device to help them have a higher quality of life. So there are other options. And I think that it's really important to talk to your doctors and let them know how you feel about things. Lorrie, are you also seeing a psychologist? Or is there a psychologist who's on the transplant team, just to check in with you and make sure that you're doing okay, emotionally and mentally?

Lorrie H: 30:26

My transplant team does have a psychologist on board, I had to meet with her during evaluation last December. And at each visit, your doctors and your nurses kind of assess how you're doing all around. And also, they tell you every visit,"Hey, if you need to talk to somebody, we can set you up with the specialists." For me, I haven't really had to do that. During college, I had a lot of really great counseling, because it was free. And I was going through a lot then, too. And honestly, learning a whole bunch of coping mechanisms there hasn't really helped get me through. And so for me, I haven't personally had to talk to anybody while I've been on the list, but I do know that it's an option. And I know that the resources at Texas Children's are there for me if I need them.

Anna Jaworski: 31:17

That's really good to know. Sometimes what can help you get through is just knowing that you can have help if you need it.

Lorrie H: 31:25

For sure, for sure,

Anna Jaworski: 31:26

That can make a big difference. Well, thank you so much for coming on the program today and sharing your progress with us, Lorrie, I'm looking forward to having you come back on the show later after you get your heart.

Lorrie H: 31:38

Yeah, thanks for having me. I hope to come back sometime soon as well.

Anna Jaworski: 31:43

Well, Friends 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. Have a great day, my Friends, and remember - you are not alone.

Closing: 32:20

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.