Heart to Heart with Anna Podcast Artwork Image
Heart to Heart with Anna
Quality of Life Versus Quantity of Life: Decisions Regarding End of Life Care
August 06, 2018 David Franco
Returning Guest, David Franco, talks with Anna about what it's like to go into congestive heart failure and the new issues he is facing when considering medical end-of-life care. He talks about how his congenital heart defect has affected his activity level over the course of his life and what changes he has seen in the last several years. Most importantly, David talks about the importance of each patient needing to be his or her own best advocate to determine boundaries and limitation for care and others need to be respectful of those choices.

Episode Transcript

Anna:0:04I am the host of 'Heart to Heart with Anna.' This is the seventh episode of season 12 and our theme this season is Organ Donation and Transplantation. I'm very excited today to feature returning Guest, HUG Sound Engineer, one of the former hosts of 'Heart to Heart with Nicole and David,' and my very dear friend, David Franco. Today's show is entitled Quality of Life Versus Quantity of Life: Decisions Regarding End of Life Care. Welcome back to 'Heart to Heart with Anna,' David.

David:0:35Hi. Thanks for having me. I really appreciate being here.

Anna:0:38Well, you know, I always love having you on the show and many of my Listeners know about you because you've been on the show a number of times. I think you've even been on some of my live shows.

David:0:49Yes. I try to get involved as much as I can, but I don't know how many people might know of me so.

Anna:0:56Well, I think you'd be surprised, especially since you were the former Host of 'Heart to Heart with Nicole and David,' but like you said, maybe not everybody knows who you are. So let's start by having you tell me about your heart journey so far.

David:1:10It started in December of '66. I was born with a CHD called L-TGA or ccTGA, and L-TGA is levo-transposition of the great arteries. It's the same as ccTGA, which is congenitally corrected transposition of the great arteries. So ventricular inversion is what I refer to it as, and that's, in fact, what my doctors call it. They call it transposition of the great arteries with ventricular inversion. I was a born also with the vsd and pulmonary stenosis and that's what you get when you have TGA. Those are some of the effects that you have that you were born with.

Anna:1:48Well the VSD, or ventricular septal defect, or it's a hole in the heart between the two ventricles, that probably helped to save your life, didn't it?

David:1:57Yes. It let the blood mix. That was the red blood and the blue blood and it's a good-shaped heart. It has four chambers, however, the ventricles are switched. So the ventricle that's doing the strong pumping is actually pumping to the lungs instead of to the body; the right ventricle, is pumping systematically. That's the problem that I'm having now. I grew up as a normal child, didn't feel I had any problem at all. I was really kind of healthy for somebody with a CHD. I didn't have my first surgery until I was five years old.

Anna:2:33Isn't that amazing?

David:2:34And I know people with ccTGA that haven't had surgery at all. They have had no corrections and that's amazing, but there are so many differences in the effects of what we're born with. I think ccTGA consists of less than one percent of all the CHDs out there. It's one of the most rare forms of congenital heart disease.

Anna:2:58Well, but a lot of people not know is that the heart is a really unique structure and the left and the right ventricle actually looked different. The left ventricle is more striated. It's more muscular because it does have to pump to the entire body. And so the right ventricle isn't quite as muscular. So for that not-quite-so-muscular part of your heart to have to do the work of what the left ventricle has to do, I would imagine after a period of time it would start to wear out.

David:3:28That's what's happening. We find that the ability for that ventricle, the right ventricle, to squeeze into pump blood throughout the body is getting less and less by the month or by the year

Anna:3:40You're seeing a consistent decline. Is that what you're saying? Correct. So now you're in your fifties and you said that most of your childhood was pretty normal, but now the problems that you're having are a little bit different, let's talk about some of the problems that you're having now.

David:3:57They know there's something wrong with the way my body metabolizes oxygen and it's not my body's inability to metabolize the oxygen. It's the heart is not pumping the blood properly to the organs. So there's always a limit because there's C02 buildup. As I get older, my recovery period is longer and longer. So I think what is happening is my heart is just not pumping the blood to the cells to get the C02 out, the oxygen in

Anna:4:28to go through that exchange, um hmm

David:4:30And also there's no gas exchange problem in the lungs. I do not have any problem there. No pulmonary hypertension at all. I seem to get a little bit more winded. There's a problem with my heart. It's been a rapid change. I'm at that point now they're actually looking at -- I should be placed on a transplant list or not.

Anna:4:53Okay. Have you exhausted all the different kinds of drugs that might be available to help your heart function better?

David:5:01Drugs. I would say I still have the opportunity to experience stronger drugs that could help me live longer. I'm glad because I have reached the time where certain water pills don't do their job anymore and we need a heavier dose and specifically I'm talking about lasix. It's getting to the point where they're going to have to put me on another water pill or something else has to be done. My fluid retention is terrible and that's one of the reasons why I'm breathing so heavily, also.

Anna:5:29Right, and why you're congested, because yes, you have to worry about congestive heart failure more than somebody who doesn't have the same anatomical problems you do. Okay. So one of the other new things that we've been hearing about the last few years is ventricular assist devices. Is something like that even available for you, given the fact that your anatomy is kind of wonky for lack of a better term?

David:5:56No. That's a better term than I would use.

David:5:58I tell you. They have discussed it and I will get to the LVAD which is the left ventricular assist device, but in my heart it would be my right ventricle that it would assist and I can't have that done because I have my lead in my right ventricle for my ICD. I have a biventricular ICD. The systemic ventricle does have the lead in there and there's no area for the LVAD to actually sit and they don't want the lead compromised because where it is right now it's doing the best job it can. So an LVAD is probably one of the devices that they might use to hold a person over while they're waiting for a transplant, but in my case it's not something I could wear daily because I'm not even on the list. So a transplant's not even there, but all these questions just get me deeper and deeper into thought.

David:6:55How long would it have to be in the hospital just for them to monitor to me? Would I be able to go home? Would I need to be monitored because I have an ICD and the ICD is implanted cardioverter defibrillator and it's because I faint and it will shock me. And it has corrected me, but that in itself is just one of the things where I don't know how I qualify for that and it's not really even been mentioned by my transplant team. So I don't know if that's been spoken about.

Anna:7:27You're just one complicated guy. Your heart is really unusual and, like you said, you already have devices in there that are helping your heart to behave a little bit better and you can't have too many devices in there because there's only so much room. So I want to ask you philosophically, it sounds like you're at a point in your life right now where they're talking transplant - maybe - they're talking adjusting meds. It sounds like you're at that point where you're really looking at the quality of your life versus the quantity of your life. Can you talk to me a little bit about that?

David:8:04Yes. I've spoken with my doctors about the quality versus quantity issue. In fact, one of my doctors was very understanding and he was into it about the quality versus quantity of life and I am also. I mean I really don't know what to say because I first of all, don't think I could handle a transplant. Actually, I don't even know if I qualify yet. I've had a stroke. In 1993 I had my second and my last open heart surgery and the surgery was to replace my pulmonary valve and to add a pulmonary conduit which added more oxygen to the system and unfortunately I threw a clot so I had a stroke or an anoxic event, as they call it. And ever since that time I have had such cognitive problems. It's of those things that, well, I have to keep tabs on this now too and I have to keep tabs on this and actually having a stroke makes it even more difficult because I can't remember to keep tabs on this and I can't remember to keep tabs on that.

David:9:08So I have a lot of issues right now that are going on that make this decision of mine even more complex and complicated in such an issue. So in regards to the quality and quantity of life, I realize that there are certain things that I have to accept that will be done to me to keep me at a normal baseline where I can actually just function on a daily basis. But I really have reservations about my being in the hospital again and what could actually happen afterwards? What if I reject the organ? What if I get infections because I'm on anti- (you know) immune suppressants and anti-rejection drugs and I don't have a great support system and it's not as if it's my family. I'm in Austin, Texas and Austin is not known for its CHD atmosphere. Now, however, we do now have Dr Frazier who came from Houston Methodist and is world renowned for his pediatric cardiology and hopefully in adult clinic or at least a CHD clinic will be started here in Austin, but that's certainly years away. This transplant team I'm seeing here in Austin is actually the second transplant team I'm seeing because I was in San Antonio for six years previously and I was having annual tests and actually I would see them twice a year, but they would do the annual and V02. They would do the blood work, they would do echoes. They would do everything there and I would also be covered by my local pediatric cardiologist. I mean, I had all guns firing. I was feeling great. I was running races. I was, you know, I ran a marathon relay with five other people and that's four point something miles and I didn't break any speed records, but a year ago I was just in great shape. I couldn't believe ... I had no idea. I would actually be talking about this almost one year later to the day.

Anna:11:17Yeah, I mean you even helped start a group with John, didn't you, on Facebook for athletes with congenital heart defects.

David:11:25John and Mark started the group. They asked me to join them as administrators and they're the two real minds behind the project, but yes, I was understanding the importance of exercise and we're not professional athletes, let's say that, but we have a nice group of 700 people who communicate what's been going on and how they live their lives. So what they do, but I was so into everything. I think all of it came out of that '93 surgery where I had my pulmonary valve placed. I felt great besides the fact that I had a stroke, but I was much more physical than I ever was and what I am now. So I do think about some of the issues that I have to deal with and how quickly this happened. In September of 2017, my brother died and he was two years older than I and we grew up doing everything together.

David:12:18When I lost him, I lost so much and I've traveled to pick up my mom in Connecticut and then I traveled to Florida to his funeral and wake. Whenever he turns back to Connecticut, I ended up in the Yale New Haven with an infection and now since October when I was actually in Yale New Haven Hospital in Connecticut, it seems as if I never recovered. And the first thing I noticed was the fluid retention. And with that comes the shortness of breath. I can't even walk to the mailbox. It's not the end of the driveway. We live in a neighborhood where it's a community mailbox, so it's four driveways down and over a house, but it's a short walk. And I notice I still get very winded and I used to be able to do 90 minutes on the stationary bike at a good pace. Now I'm lucky if I can do 20. I don't run any races anymore, and actually the stationary bike is the only exercise that I can get and that's when I can actually do it. I don't feel I can do that anymore, so I think there is a definite decline that I'm experiencing. As you mentioned before, there are some meds that are working and some meds that aren't. Most of my Beta blockers and the good heart meds that I take are working and they're still maintaining a decent quality of life, but with that fluid retention, it just really throws the whole body off. Luckily I can still stay on top of that.

Anna:13:47Right. Right.

H2HwMichael:13:50"Texas Heart Institute were offering us a mechanical heart and he said, "No, Dad, I've had enough. Give it to someone who's worthy."" "My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor."

Michael Liben:14:10Heart 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:14:26Home. 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.

Dr. Wernovsky:14:36Many 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:14:46I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

Dr. Wernovsky:14:53Enjoy the music

Anna:14:53Home. Tonight. Forever.

Anna:15:02So David, you and I have talked a lot about the decision to transplant or not to transplant. It's kind of been the elephant in the room for a while now. Like you said, for six years you've been going back and forth to San Antonio and I've been friends with you while you've been deciding if you wanted to change your transplant team and there's just been a lot going on. Just like the proverbial elephant, there are so many parts to the elephant and so for now I want us to discuss some of the various aspects of transplantation that you're having to take into account.

David:15:39I think the first and the most important is not my decision, but how it would affect my family and even though I had thoughts of this for a long time, I never really spoke to my wife. I never spoke with my daughter and my mom, my sister, almost my mom who's been on the show before. I really had to address that subject and that was the first thing I got through was telling them how I felt. I will tell you what I told them is that I am not signing my life away and I'm not giving up, but I told them I really don't think I could handle the transplant and I really went through all the things that we said. Basically, a lot of it is because I've been there and that's what I told them. My folks understand. Dad died a decade ago, so he's not in the picture, but yes, my mom doesn't need to lose another son or daughter.

David:16:38The first thing I did was to talk to my family and let them know and I'm Catholic and I'm very Catholic, so I talked to my priest also and I thought there would be ethically a problem with my not accepting a heart and that's what I discussed, is there a problem and we discussed that and no, there's not a problem with what the Catholic Church teaches. The next thing I actually did was realize that I have to make the decision myself as to what I can do and can't do, and that was probably three years ago that these questions started popping up. As you said, we knew each other before any of this ever happened. I was really doing very well physically and emotionally, mentally, everything, and all of a sudden this happened so quickly. I knew this was happening beforehand. It's just there's not a day that goes by I don't think of my brother. And I think about him and think about the fun stuff we did and I think that that was actually the trigger to this latest episode that I'm having.

Anna:17:37Well, I understand that because when you lose somebody close to you, and many of my listeners know, I just lost my mom in February of 2018. It makes you face your own mortality. It makes you realize brief life can be and I don't think you can go through something as major as what you're going through and not have to contemplate what your end of life decisions will be.

David:18:03True. I never really thought of it that way, but I never give myself credit to having the right to say, "Well, it's my life. And it's my decision." I had a long conversation with my mother and she pointed out to me that I never liked to received gifts. Even on my birthday, I was almost embarrassed when people gave me a new watch or a new bicycle. Even a small gift. It wouldn't matter -- a card. It was just one of those things where I was just not comfortable in receiving and she said maybe your not accepting the heart is not accepting the ultimate gift, which is somebody else's gift to me. I think about that a lot and I think she might be onto something because I have a problem just wondering how my life will be after I start the process of the transplant. I have friends now who have had transplants. I have a friend now who's in the hospital waiting for a transplant and I have friends who won't accept a transplant, but I have never heard, "I won't accept a transplant."

David:19:11I always hear, "I had a successful transplant and I'm back to doing this and that and the other thing," and that's all and good. It's just I needed to tell the story that there's also people out there who can't deal with the fact that it's a long process and it's a major decision and it's not a guarantee. There's nothing that's safe about this process and I'm almost trading my CHD for a cancer-like disease and I don't mean to say that I'm going to get cancer. I mean being on all the drugs is kind of like being on chemo. It has that effect on the body and yes, I could recover in two years or two months. I don't know how long the recovery is. I have read books, 'Transplants for Dummies' and 'Transplant 101.' These were short little books that I picked up in the bookstore and it's not as if I'm the only person that has ever gone through this. I'm thinking whether I can actually handle this and not make things more difficult for my family and I don't have financial reservations and that really has nothing to do with it. We have insurance and yes, this will cost money, but that's not my biggest problem. It's my ability to handle the procedure and having had a stroke is one of those things that just sticks out in my mind.

Anna:20:36Yeah, I'm sure that was really scary for you. Having had that stroke and waking up and not being able to communicate like you were able to communicate before, it sounds like you suffered quite a few losses with that stroke and I can imagine that if you had that following your last open heart procedure that you have maybe some PTSD regarding any kind of surgical procedure that's gonna knock you out and potentially be a problem.

David:21:04I understand that point, but my ICD has been changed about a dozen times. You know, you sign your life away for that. Yeah. Surgery, any surgical procedure, you take a chance. Especially doctors, they don't want to intubate me and they don't want to put tubes into my lungs. They want light sedation, so general anesthesia is usually out of the question. The most painful accident I had had nothing to do with my heart and they use the local sedation and I guess what they call a BEIR block. BEIR block and it's when I put a knife through my thumb and it was terrible, but even in that situation they wouldn't put a tube down my throat. They just wanted to keep me from not being sedated. Similar to what they have to have an extra anesthesiologist to watch my breathing, to monitor everything.

Anna:21:56Well, it's like we said before, you're a really complicated case; a regular anesthesiologist may not be able to handle all the things that you might present and so you would need a pediatric cardiology anesthesiologist in order to really have the care that you need.

David:22:12For all of my surgeries, I have consulted my local pediatric cardiologist and he arranges for the proper medical staff and most importantly is the anesthesiologist. For me, if I do have a cath done, I would be willing to have a cath done. Then it would have to be done by a CHD doctor. It could not be done by an adult doctor who wants to look at your coronary arteries. Yes, I need to have the correct people and I've always been lucky enough to be good friends with my local pediatric cardiologist now for 20 years and he's really upfront and forward, gives me names, shares people. In fact, he's the guy who got me started into all of my CHD advocacy back in 2005 and got me in touch with ACHA, got me in touch with some local support groups, but I think the hardest part for me is not having the support that I need and I did mention before it's not as if I don't get assistance from my immediate family and understanding. It's just that I need professional help and Austin is just not that city to get that medical help. I've flat out asked for counselors and no, I haven't asked my pediatric cardiologists who would probably go out of his way, but I've asked my primary. I've asked other people and they said, yeah, just look one up in the dict-, oh, the

Anna:23:32the directory?

David:23:32Exactly, and I'm the kind of guy who needs to have a good doctor that I like to work with or better therapist. I can't have somebody who I don't want to see to talk to and I wanted to mention -- I consider a very lucky person to have gotten this far in my life as I have. I lived a great life. I'm looking forward to living longer. It's not as if I'm checking out tomorrow, but I want to maintain a good quality of life and I do care about the quantity, however, that comes second to the quality of life

BHP Promo:24:04Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found at Amazon.com or at her website, www.babyheartspress.com. Her best seller is 'The Heart of a Mother,' an anthology of stories written by women, for women in the CHD community. Anna's other books, 'My Brother Needs an Operation,' 'The Heart of a Father' and 'Hypoplastic Left Heart Syndrome: A Handbook for Parents' will help you understand that you are not alone. Visit babyheartspress.com to find out more.

Anna:24:44David, in the previous segment we were talking about some of the different aspects of transplantation that needed to be taken into account, but now I want to talk about quality of life versus quantity of life and you ended by saying that this is something that you are taking into consideration now. Not that you're ready to check out and you better not because you're a dear friend of mine and I expect you to have more quantity of life left. We have a lot of work to do together yet; I'm not ready for you to check out. But there are some things that you have to take into consideration as an adult. And I'm sure things would be a little bit different if you were in your teens right now. So talk to me about some of the quality of life issues that you're having to consider right now.

David:25:28I guess the biggest thing is I've never had a problem with taking the meds that I take. I take a lot of medications and it's getting to the point where they're adding more and more or at least the larger pills if they don't add more and more. I guess that's the first thing. I know that's part of my life and I do have to take care of myself, but it brings itself to the forefront that, okay, I'm taking more pills because I'm getting more ill and that's what I think about. I also think about how much that if I don't take those pills, how much it does affect me because they are working and I've mentioned before, the fluid buildup is just really getting to a point where it does bother me and as you take a diuretic, it's main purpose is to get rid of fluid from the body.

David:26:16How do you do that? But you go to the bathroom and you pee it out, so either you're bloated from all the fluid in your body or you're going to the bathroom every 20 minutes for six hours and I'll tell you, if you're ever in a car on a water pill, you're in a tough situation because there's no sign that you're going to have to relieve yourself. It's an urgent thing and I'm getting used to it, but it's really kind of a hassle. And yes, there are people who've been on these water pills all their life. I understand. And as I said, I've been lucky, but for me it's new.

Anna:26:50You didn't have to be on lasix when you were younger as a kid.

David:26:54No, no, never.

Anna:26:55How old were you when you first started taking lasix?

David:26:59In 2015 -- August over Labor Day weekend I had my first adult episode of congestive heart failure and was admitted to the hospital and they said I had heart failure. Within six months I dropped 40 pounds, plus I dropped 20 pounds in the hospital over three days.

Anna:27:21Wow. So you were carrying an extra 20 pounds of fluid,

David:27:25at least and

Anna:27:27Oh, my goodness!

David:27:28I changed my diet and subsequently I lost even more fluid and it's funny because I was working out at the time and it was actually putting on muscle mass and I'm not a big guy but every little bit helps and I was still weighing less even though I was adding muscle weight. So that tells me that there was a problem. It was a problem. So it helps me breathe though because I get winded often and I'm really starting to have to catch my breath just talking to you on the phone. It's one of those things where it's such a drastic quick change in my life and it's been less than a year and how I can go from running races and playing basketball for hours at a time and lifting weights, exercising or I need to even. Well I don't even think if it's too late to take a nap. If it's a nap time, it's nap time and I need it.

Anna:28:25Right. So your body just shuts down.

David:28:27It does. And there's no way around it.

Anna:28:31Well, talk to me about why you feel it's important to get this message out.

David:28:35I think the most important thing is I really want people to know that, as I said before, I'm not giving up. I don't think that it's fair for people to think that and I know people will actually think that, 'Oh, but what about your family?' Or they may think, 'What about this? What about that?' But this is my life and I know I'm a young person at 51 years old, but I've lived 10 times longer than they thought I would live. They didn't think I'd make it through their first open-heart surgery in 1972. I'm not saying I'm on borrowed time. It's just,

Anna:29:08It sounds to me David, like you have a healthy appreciation for the life that you have right now and that you are going through a number of changes with your medications and it certainly sounds like you have a very dedicated team that is open to adjusting medications and who knows what medical devices might come along in time to help you. It seems like other devices have been invented in time to help you and it doesn't sound like you're giving up. To me what it sounds like is that you have a healthy understanding of what you personally are willing to accept regarding the length of measure that you will go to to save your life. Is that a fair assessment?

David:29:55You hit the nail on the head on that one because I'm not giving up. I think about things that matter, but, yes, it just gets more and more complicated daily. Maybe it's the quickness of this deterioration and maybe I will rehab and get back to a point, but as they say, you know, there are four stages of heart failure and I'm currently in three or C and D is the next one. And basically they can tell me that because I'm in heart failure, I'm experiencing symptoms of heart failure, but the medications are still working. Actually, I'm on medications and the medications are still working, the next stage is when the medications don't work. And I have a lot of time left. I mean, it's just an issue that I know I want to talk about early in my life because maybe somebody can reach out to me and let me know or I can hear something about this new procedure as you said, maybe there will be some device developed or something, but it's my choice and my decision and I really have to make that choice when the time comes, it's not as if I'm actually anticipating not having a heart transplant.

David:31:06I'm leaning not to having that procedure done, but you never know what happens in the future and I wish we never had CHD to have to deal with this. That's the funniest thing about all of this because I've always been kind of the first on the list for everything. Oh, this guy has CHD. I. So I've been in the ER. They take me first out of the first 15 people who have been there hours and I've been lucky, but I now it's weird how things have changed and you've gotten older and you kind of take for granted that. I guess it's the population increases. I guess as people feel more... They're getting sicker, we're all getting sicker, we're all getting older,

Anna:31:46So it seems to me that what you're trying to say is that we really don't know what the future holds. I'm really encouraged by some of this stem cell research that's being done right now. They're actually doing stem cell research at Mayo Clinic where they're seeding stem cells on adults with hypoplastic left heart syndrome. They're trying to increase the ejection fraction of people whose hearts are starting to fail. I think that you're right, I think right now is not the time to give up, but it's time to know what your limits are and your boundaries and it sounds to me like right now you're still finding out what your boundaries are and that may be by telling your story, you're saying it's okay to question. It's okay not to say yes to everything, that if something is offered to you to know that you do have the right to be your own advocate and say what you will and will not accept.

David:32:39Exactly. And it also gives me a chance to to learn more. As you said, the stem cell research they've been doing, I've been doing a lot of reading on that also and it's incredible what they can do. It's just we need the research funding for that and maybe something will happen in my lifetime. The potential is incredible.

Anna:32:57You might be another pioneer; you never know. You might be one of the ones who finds out what kind of new procedure will help people who are in congestive heart failure. It's scary to be in congestive heart failure. It's really scary to go from running a marathon with a group of friends to having difficulty even checking your mail. Nobody wants to be there and I think what we need to do now is exactly what you said. We need to be advocates. We need to recognize that the population of congenital heart defects survivors, heart warriors, whatever label you want to put on the people who are growing up with congenital heart defects and making it past age 18 into adulthood is expanding. It's growing, and with that, the number of complications later in life are increasing, expanding and growing. And what we need to do is continue to ask hard questions about what we can do to extend not only the quantity of life but the quality of life so that you feel that your life still has meaning and purpose.

David:33:59Exactly. And I think that is true with what you said about the population of adults with CHD is growing and we're handing them new challenges. They've never had to deal with this before. And I'm not saying my case is special over anyone else's. It's just it's new to them. They, oh sure, they've seen seldom cases, but we have clinics all over the country so maybe they've seen it in northeast a lot or in southern California, but maybe they haven't seen it here in Texas or Florida or the Midwest. Who knows? I mean the data we give them is so important that I think it's great that they're actually learning from us or they can potentially learn from this.

Anna:34:41This just underscores the importance of the Congenital Heart Futures Act and the tracking that they're trying to do of children born with congenital heart defects in the United States. Because we are starting to amass a lot more information, but you're right -- from center to center because the United States is such a huge country, doctors may only see one or two cases. There may only be 100 cases nationwide, but 10 years ago, 20 years ago, there weren't even that many, and so you're right, it was pretty much anecdotal. Now we're starting to get big enough numbers where it's not just anecdotal evidence. We're actually able to compile some information if, and here's another big issue that we haven't even addressed in this show, but we've talked about on Heart to Heart with Anna before, we have so many adults who are being lost to followup care, that there's probably an even bigger population of patients that these doctors could be following if they weren't lost to follow-up care.

David:35:40Well, that's another story, but yes, exactly. I was lost for about seven years. College years. And I know exactly what you mean. It's a transition period where you almost need it the most because you're going from one doctor who watched you as you grew up to this new CHD doctor who you hope it's a CHD doctor. So

Anna:36:01Right

David:36:01I wanted to add also the Congenital Heart Futures Act is so important. I was focusing on the accreditation that the ACHA is pushing and I think that's incredible that we have standards across the board. We have accredited centers that have CHD doctors and facilities, but this Congenital Heart Futures Act is such a great achievement that I'm just so happy that we could actually just get that little bit done. And we keep moving forward.

Anna:36:31Yep. We just need to keep being advocates like we have been David and pushing for Congress to continue to give money for this act to continue to stay viable because it doesn't do you any good if we have a law where there's no money behind it to help things move forward and I think that's what you're doing, too. And I really appreciate you coming on the show today to talk about a really personal and difficult topic.

David:36:56Well thank you very much for having me and I don't really appreciate being on this side of the glass, if you will. I'm more of a behind-the-scenes kind of guy, but this was a very important message and I wanted to get it out there and I thank you very much for having me on.

Anna:37:10Well, folks that does conclude this episode of Heart to Heart with Anna. Thanks for listening today or find us on iTunes and subscribe. And remember my friends, you are not alone.

HUG Message:37:21Heart 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 pretending 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.

H2HwAnna Closer:38:04Thank 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.

See All Episodes