New Transplant Guidelines and Transplant Alternatives with Dr. Ali Zaidi!

Why did the statuses for being listed for a heart transplant change in 2018? Why would someone born with a congenital heart defect need a transplant and how do they compare to adults born with healthy hearts who suddenly need a heart transplant regarding where they would fall on "the list"? What are some of the devices used as a bridge to transplant? How do those devices play into the new criteria for heart transplantation? Dr. Ali Zaidi answers these questions and more in this episode of "Heart to Heart with Anna."

Dr. Ali N. Zaidi is an Adult Congenital Heart Disease Specialist. He is one of only a few selected cardiologists’ in the U.S. who is board certified in Pediatrics, Internal Medicine, Pediatric Cardiology, Adult Cardiovascular Disease, Adult Echocardiography, and Adult Congenital Heart Disease. Dr. Zaidi heads the Mount Sinai Adult Congenital Heart Disease Center in NYC. 

For more information about the change in status in 2018 and for answers to more questions regarding heart transplantation, use this link: https://optn.transplant.hrsa.gov/data/organ-datasource/heart/heart-allocation-questions-and-answers/

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Transcript

New Transplant Guidelines and Transplant Alternatives with Dr. Ali Zaidi!

Dr. Ali Zaidi: [00:00:00] The guidelines that changed from 2006 to 2018 are in essence the change in status for cardiac transplantation.

[00:00:16] Anna Jaworski: [00:00:16] Welcome to "Heart to Heart with Anna." I am Anna Jaworski and the host of your program. I'm also a Heart Mom to Alexander who has a single ventricle heart and is post-Fontan. We are in our 15th season of "Heart to Heart with Anna" and we're so happy you're here with us today. I'm very excited about today's program to feature a cardiologist who specializes in working with adults with congenital heart defects.

[00:00:39] Today's show is entitled, "New Transplant Guidelines and Transplant Alternatives with Dr. Ali Zaidi. Dr. Ali Zaidi is it adult congenital heart disease specialist who received his medical degree from the Aga Khan University in Karachi, Pakistan. He completed his combined internship and residency in internal medicine and pediatrics at Penn State University Hershey Medical Center. Dr. Zaidi completed combined fellowships in both pediatric cardiology and adult cardiovascular disease at Nationwide Children's Hospital and the Ohio State University Medical Center. During these five years, he completed specialized training in adult congenital heart disease or ACHD.

[00:01:22] Dr. Zaidi is one of only a few selected cardiologists in the United States who is board certified in pediatrics, internal medicine, pediatric cardiology, adult cardiovascular disease, adult echocardiography, and adult congenital heart disease. Dr. Zaidi is the immediate Past President of the Alliance for Adult Research in Congenital Cardiology. He has won numerous teaching awards during his career and heads the Mount Sinai Adult Congenital Heart Disease Center in New York City. Welcome to "Heart to Heart with Anna," Dr. Zaidi. 

[00:01:57] Dr. Ali Zaidi: [00:01:57] Hi, Anna. Thanks so much for letting me be on your podcast. I'm very excited and I think this should be, a lot of fun, so thank you so much for having me.

[00:02:06]Anna Jaworski: [00:02:06] I'm so happy that you responded to my request for a guest who understands transplant. This is something that I have been looking for. I need some information.  First of all, I'm stunned by other specializations you have. You don't specialize in transplant, but clearly, because of all the other specializations you have, transplant has come up a number of times, I'm sure. What made you want to study pediatrics, internal medicine, pediatric cardiology, adult cardiovascular disease, and echocardiography? Wow. 

[00:02:40]Dr. Ali Zaidi: [00:02:40] Thanks. You're right. I mean, the one thing that's missing there that is probably the transplant board. But it's been an interesting journey. When I started many years ago, I always had it in me that, I enjoyed working with children and pediatrics was something that I was leaning towards. And like any other med student, we go through the different specializations - be it surgical or medicine in pediatrics, but as time went along, I enjoyed medicine as much as I enjoyed pediatrics. And then I came across, congenital cardiology when I was at Penn State. And I was always fascinated with cardiology  so what happened was it all just came together and the thought of doing adult congenital heart disease enamored me at that stage. And one thing leads to another, and this is how I decided that this is what I wanted to do.  I'll tell you, in the 20 years that I've been a physician, I wouldn't change it. It's something that I enjoy doing and to see a child grow with congenital heart disease and take them all the way to adulthood, and then take them through adulthood to where they need to go - it's a fascinating journey. And to be part of it is absolutely wonderful. 

[00:03:49]Anna Jaworski: [00:03:49] I'm impressed that you saw that need because as you know, for the longest time, we had more babies being born with congenital heart disease than we had alive with congenital heart disease.

[00:04:03] And now the flip side is true. Now we have more adults alive in the United States. With congenital heart disease than we do babies being born, which is so exciting for me as the mother of an adult. I'm so happy to see that this has really, really changed. What happened with that is that the need for doctors who understand that an adult who was born with a congenital heart defect is so very different than an adult who has acquired heart disease.

[00:04:33]Dr. Ali Zaidi: [00:04:33] That's correct, Anna,  you hit the nail on the head and that's exactly. what's happened when I started as an intern and resident, and this is going back, as I said, almost 20 years ago, this was something we weren't thinking. And as my career has progressed, I've seen exactly what you described and that in its own self is a testament to how far congenital or pediatric cardiology has come.

[00:05:00] And the success of not just pediatric cardiology, but the success in everything that goes within that realm of pediatric cardiology: the surgical outcomes, the ICU outcomes, the longterm care and all that has led to these children now being young adults, and even, quite honestly older adults. If you believe that my oldest patient I see  is an 82-year-old with a coarctation. 

[00:05:26] Anna Jaworski: [00:05:26] Oh my gosh. That is so awesome. 

[00:05:29] Dr. Ali Zaidi: [00:05:29] Yeah. Done by Dr. Blaylock. 

[00:05:31] Anna Jaworski: [00:05:31] Oh my gosh. Wow. That's cool.

[00:05:35] Dr. Ali Zaidi: [00:05:35] Yeah, but that's exactly what you just said. I mean, I think that's the fascinating part of adult heart disease. You see the spectrum and as you said, I mean, just looking at the numbers in the United States that's where there's  more adults with congenital heart disease than children.  

[00:05:51]Anna Jaworski: [00:05:51] Right. Than children being born... 

[00:05:53] Dr. Ali Zaidi: [00:05:53] Yeah, absolutely.

[00:05:53] Anna Jaworski: [00:05:53] with congenital heart disease. The last piece of research that I read recently that actually gave a statistic said - over 2 million adults in the United States. That just blows my mind.

[00:06:04] That's amazing. So you studied a lot of difference areas and the thing that I love about learning, 'cause I'm a lifelong learner myself, is that the more you learn, the more you learn how things are interrelated. How does transplant fit in with all of these other areas that you've studied? 

[00:06:23]Dr. Ali Zaidi: [00:06:23] That's a great question. And, as I said, that's the one certification I probably don't have is transplant, but where does transplant come in? So, I think this is a very, very important, question. I'll try to answer this in two different ways. One is. In our world of adult congenital heart disease. what we know is that our children survive. They get into being young adults and as they get further along, what we are also finding out is that these young adults, as they get further along, some of them based on the complexity of their congenital heart defect, may need a transplant evaluation at some stage. So again,  just so I'm clear, this is not across the board. This is not for every congenital heart patient that's out there. 

[00:07:10]Anna Jaworski: [00:07:10] I appreciate you saying that because when my son was diagnosed with HLHS after a time, I had parents saying, "Oh, well, transplant is the fourth stage...

[00:07:21] Dr. Ali Zaidi: [00:07:21] Right

[00:07:22] Anna Jaworski: [00:07:22] ...repair and that kind of freaked me out a little bit and that doesn't have to be the case. So I appreciate you saying not everybody is going to require a transplant. 

[00:07:32] Dr. Ali Zaidi: [00:07:32] Absolutely. And I think it's very important to understand this. This is why I did medicine and pediatrics and all the different fields is because now I'm going to put my pediatric cardiology hat on just for a second. Why is that important?

[00:07:43] What we want to give is a message that we can take treatments forward. we've advanced in both medical and surgical nuances, we'll transplant it, be a possibility for some patients.

[00:07:57] Yes. I mean, but not for all. And I think it's very important to understand that. For a mom or a dad who has a child with congenital heart disease or for a young adult with congenital heart disease. The end product is not transplant for everybody. That's a very important message to get out there. Some yes, but not for all. 

[00:08:18] H2HwMichael: [00:08:18] "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.'" [Cameron Miller]

[00:08:25] "My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go." [Rachel Greenbaum]

[00:08:30] "Whatever strife or conflict that we experienced in our long career together was always healed by humor." [Phillip Proctor]

[00:08:38] "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. 

[00:08:47] HUG Info: [00:08:47] 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.

[00:09:08] Rejoiner: [00:09:08] 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." 

[00:09:27] Anna Jaworski: [00:09:27] Dr. Zaidi before the break, we learned about some of the specializations that you have trained in and how you came to get involved in transplantation.

[00:09:38] Can you tell us a little bit about the history of heart transplantation? 

[00:09:43] Dr. Ali Zaidi: [00:09:43] Yes, absolutely. if you talk about the history of cardiac transplant and we can talk for about an hour, just, we won't but I do want to highlight a few things.

[00:09:52] One of them is when did this start? Why did transplant even happen? Well, if you think about it, if you go back into the 1950s and 1960s, that's not so far back. The thought of doing open-heart surgery was sort of raising its head in the 1940s and '50s, just the thought of open-heart surgery was sort of raising its head.

[00:10:10] But it was really in 1967 if I recall December 1967, and this was in South Africa when Dr. Christiaan Barnard did the first heart transplant and this was in a 54-year-old, gentleman with end-stage ischemic cardiomyopathy, which means had acquired heart disease and the patient needed a heart transplant. That was the first time that there was a clinical heart transplantation that was done.  That's in 1967. What people may not know with that first heart transplant was that there was a great recovery but the patient died. I want to say about 18 days later but that was the first heart transplant that was done successfully and it was a success.   Pretty soon, after that, there was second heart transplant was performed. This was a pediatric heart transplant. and the recipient, at that stage, was an 18-day-old child with Epstein's anomaly of the tricuspid valve. This was done in New York. The point I'm trying to make is this was in the '60s when this started, and as time went along, this process grew. Here we are now in 2020, where heart transplant is done in many centers, across the United States and the rest of the world but that's how the history or the origins' of heart transplant started in humans. 

[00:11:28] Anna Jaworski: [00:11:28] Uh-huh, uh-huh. Yeah. It has a very distinctive history, as you alluded to. I don't remember hearing about the 18-day-old baby in New York City. That's amazing. 

[00:11:42]

[00:11:42] Dr. Ali Zaidi: [00:11:42] Yeah. This was in New York. that was the second one a pediatric case. 

[00:11:46] Anna Jaworski: [00:11:46] Wow. And so when I started to become aware of transplantation in babies was when I was in high school. I remember hearing about Baby Fay with the bad baboon heart transplant which was all over the news way back then.

[00:12:02] So when my son was very sick and we weren't sure what was going to happen, I asked if a transplant was the possibility. Unfortunately, my son was in congestive heart failure and that wasn't an option. And the surgeon then told me they don't do baboon heart transplants anymore, but that certainly does have a distinctive chapter in the history of transplantation and transplantation has changed so much over the years. I know that in 2018, the guidelines changed again. So can you talk to me about some of the guidelines that are involved regarding heart transplantation?

[00:12:38] Dr. Ali Zaidi: [00:12:38] Yes, absolutely. I think the best way to talk about the guidelines is really to think about what we call 'status.' So if I take a step back and say, how does the process work? How do we decide as cardiologists, either ACHD docs who then work with transplant physicians be it medical doctors or cardiothoracic surgeons or transplant surgeons? What is the process?  The process is one of evaluation initially, which is where my role is, or folks like myself and see patients make a decision that this patient is at a stage where we think heart transplant is the way to go. We then speak with our heart transplant colleagues on the medical side, on the surgical side. And there's a whole process of evaluation that every patient goes through before we decide that this patient is listed. To keep it simple, what then means is that after all that process, after going through that entire evaluation, then the heart transplant physicians and surgeons sort of decide and say, 'Well, now we're ready to list the patient.'

[00:13:44] So when you talk about guidelines, the guidelines that changed from 2006 to 2018 are in essence, the change in status for cardiac transplantation. So that's an important concept to understand. What that means is in 2006, patients were still being listed, but they were listed as a status, 1A, 1B, and 2.

[00:14:09] I won't get into the granularity of each of those.  What happened in 2018 was they took that status classification and they made it - maybe a little more granular,  a little more detailed. What they did in that process was they changed it to 1, 2, 3, 4, 5, and 6.

[00:14:32] And in each of those classifications 1, 2, 3, 4, 5, and 6, they then substratify the indications for a patient to get a heart transplant. So to keep it simple: Status 1 in the 2018 change meant that a patient has advanced heart failure, is being listed for transplant, but needs to be on what's called 'ECMO,' which is extracorporeal membrane oxygenation, or a non-dischargeable VAD, which is a ventricular assist device, or has life-threatening arrhythmias needing, what's called 'mechanical support.' The point being that they changed the status allocation to a different granularity.  How does it affect congenital heart disease? What used to be Status of 1B in 2006 [is where congenital heart disease would fall] is now Status 4, which is where congenital heart disease falls.  

[00:15:31] Anna Jaworski: [00:15:31] You're the first person to explain this to me in a way that makes sense. Okay. That makes a lot more sense to me. Okay... 

[00:15:40] Dr. Ali Zaidi: [00:15:40] Right. So that's the difference. there's an organization called the, you know, they made it a little more granular,  take-home point. When you look at these. Indications for heart transplant, 2006 and 2008. Is that status one? And do you can clearly see these are patients are fairly sick.

[00:15:59] Who are not doing well, who have advanced heart failure, but then needing mechanical support, which is either an artificial ventricular assist device or ECMO or broadly speaking. Would we see, would we say as mechanical support, which means now the heart's not doing what it needs to do, but a machine or a mechanical support apparatus.

[00:16:21] Is needed to keep the patient alive. And that's how the status we'll just do one, two, three, and four. 

[00:16:29]Anna Jaworski: [00:16:29] Do most people who need a heart transplant have congenital heart disease? Or is there a larger percentage of people with acquired heart disease who need a heart transplant?

[00:16:42]Dr. Ali Zaidi: [00:16:42] The answer is simple.  The majority of adult patients who need a heart transplant are acquired disease patients, which means - let's say ischemic cardiomyopathy, which means they had coronary artery disease, myocardial infarction, the ejection fraction got very low and then they need a heart transplant or they've had again, some sort of a cardiomyopathy, where the function of the heart is not doing well for many different reasons. So in the adult world, just wearing my adult cardiology hat for a second, it is primarily acquired heart disease and it is not congenital hearts. 

[00:17:21] Anna Jaworski: [00:17:21] Very interesting. Does that mean that our adults with congenital heart defects are at a disadvantage when it comes to getting a heart? Because they're not going to start out hopefully at a 1 or 2 Status and a lot of them have pacemakers ICDs, they may have a portable VAD, they could have an LVAD. I mean, a lot of our congenital heart patients, they can function almost normally compared to people who have acquired heart disease that may not even be as severe just because our children grew up knowing their limitations and their bodies adjusted to those limitations.

[00:18:00] Dr. Ali Zaidi: [00:18:00] Right.  That's the million-dollar question quite honestly, we could have an hour-long discussion on just that question, because what you just said, and you said it very eloquently, is something that is being discussed on our end as adult congenital heart physicians and even in pediatric cardiology [there are heart transplant physicians in the world of pediatric cardiology]. So we're dealing with children who need a new heart. If you look at what you just said, you're exactly right. I don't want to use the word 'disadvantage' because I think that's a sensitive word only because, when we come to the heart transplant table and when we actually discuss being eligible for a heart transplant. Everybody who comes to the table, be it acquired heart disease or congenital heart disease is, at that stage, fairly sick. It becomes sometimes difficult, to make that decision when it comes to organ transplantation. Now, why is that? What happens with a congenital heart disease patient especially when they're adults is exactly what you've said. They have lived with their heart conditions since they were born. So when they get closer toward an evaluation status, you're absolutely right. Some of these patients and I'll keep it very simple, have low ejection fractions have maybe even some underlying liver disease or kidney disease and they've been living like this for many years. 

[00:19:27] Anna Jaworski: [00:19:27] Yeah, they may even be on oxygen... 

[00:19:30] Dr. Ali Zaidi: [00:19:30] They could be on oxygen. They could be fairly sick. And we know as adult congenital physicians that this patient will eventually need a heart transplant, but they are not that sick where they need mechanical support or ECMO or ventricular assist devices, as I said, but they're still saying the point I'm trying to make is that you're absolutely right. There is a disease burden - a complexity burden in congenital heart disease that is there from day one. these patients as they get older, they get sicker, but how do we get them to sort of the front of the line when it comes to organ allocation?

[00:20:10]I think that is, as I said, a sensitive point because it is being discussed.  I don't have a right or a wrong answer for you, but you're right there. We struggled with this sometimes because not all our patients are going to be on ECMO or are going to be on ventricular assist devices, but they are fairly sick.

[00:20:27] So then how do we take the process forward? And I don't right at this point in time have an answer for you. I will tell you that even in transplant, as the process has evolved - even since 2018, there have been exceptions to organ allocation. and this is something that gets induced again, the granularity of transplant, which basically means that when you actually looked through the guidelines or the recommendations, there are status exceptions, which means if a candidate for organ transplant, a heart transplant could reach Status 1 with an exception and sometimes that means a single ventricle patient or a Fontan patient could be that exception that they actually go higher on the list. So I apologize to give you a long answer for your question, but it's really not cut and dry. It's not, it's not so black and white. 

[00:21:25] HUG Store: [00:21:25] Hi, my name is Jamie Alcroft and I just published my new book, 'The Tinman Diaries.' It's an amazing story of my sudden change of heart as I went through a heart and liver transplant. I can think of no better way to read 'The Tinman Diaries' than the cuddle up in your favorite Hearts Unite the Globe sweatshirt and your favorite hot beverage, of course, in your Hearts Unite the Globe mug, both of which are available the HUG Podcast Network online store or visit heartsunitetheglobe.org.

[00:21:57] HomeTonightForever: [00:21:57] 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." [Anna Jaworski] 

[00:22:12] "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." [Dr. Gil Wernovsky] 

[00:22:21] "I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects." [Anna Jaworski]

[00:22:28] "Enjoy the music" [Dr. Gil Wernovsky] Home. Tonight. Forever.

[00:22:41] Hearts Unite the Globe: [00:22:41] "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 www.Congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more. 

[00:23:16] Anna Jaworski: [00:23:16] Before the break, we were talking with Dr. Zaidi about some of the transplant guidelines, and now I have a much better understanding, but there's still so much that we need to talk about.

[00:23:27] So let's start talking about some of the assist devices. You already mentioned a couple of them, but I'd like to talk about the Berlin heart. That came about after my son was born and so it's still fairly new, but I know that it can be used as a bridge to transplant. Can you talk to us about how and why it is used? 

[00:23:48] Dr. Ali Zaidi: [00:23:48] Sure.

[00:23:48]The Berlin Heart is, in essence, what's called a heart pump or an EXCOR or extracorporeal heart pump. And all that really means is that if the heart's not functioning well, and it's not  doing what it needs to do, then the physicians and the surgeons get together and say, "We're going to give this child, who has heart failure, a pump device that takes the blood from the pumping chamber of the heart and puts it out into the aorta, which is a big blood vessel." So you basically are helping the heart with an assist device and that's really the concept of a Berlin Heart. Why is the Berlin Heart important? it was the first pediatric ventricular assist device or VAD [VAD], that got approval from the FDA, I believe in 2011. from my understanding, it's been used in over a thousand children worldwide.  

[00:24:38]it's the only ventricular assist device or VAD that's available for babies and children with severe heart failure. That is what the Berlin Heart is. Now what you also said was, "Can it be used as a bridge to transplant?" The answer is,  it is a device that we use and the surgeons, put it in, with the thought that eventually that child will get a cardiac or a heart transplant and that's the concept of what we call 'bridge to transplant' that you're using it as a bridge to get the child a new heart. 

[00:25:10] Anna Jaworski: [00:25:10] It just amazes me that they can make it small enough.

[00:25:13]I went to a heart conference not too long ago, way before COVID, and there was a backpack-a special backpack. These kids don't have to stay in the hospital any longer with the Berlin Heart. That's amazing.

[00:25:26] Dr. Ali Zaidi: [00:25:26] Yes, that is correct. It comes in different sizes and only a portion of the device is really implanted in the body. There are two tubes that are inserted into the heart and then sort of tunneled out but you're right. It can be used [as] a portable, apparatus. You're right. 

[00:25:41] Anna Jaworski: [00:25:41] But it wasn't like that once upon a time. Once upon a time, if you were sick enough to need that, you were sick enough to have to stay in the hospital. And the children couldn't walk more than a few feet without being exhausted and needing help.

[00:25:54] Dr. Ali Zaidi: [00:25:54] Right. Right. Even to move away from the Berlin Heart, because when I talk about portable pumps, I don't want to give the impression that the Berlin Heart's the only one, but a lot of these ventricular assist devices. and several of the forms are, in essence, now portable and the patients go home with them.

[00:26:08]Children certainly, but, adults with acquired heart disease and even adults with congenital heart disease have received ventricular assist devices and they've gone home with them. They live at home. It is challenging in some ways because you have a ventricular assist device but yeah, you don't have to be stuck in the hospital. 

[00:26:25] Anna Jaworski: [00:26:25] Right. I've actually done some interviews with some people who have had L-VAD devices or VADs, and the quality of life for them changed dramatically when they got their device.  they could walk their children to school and they could take part in family activities and they weren't tired all the time. It really is miraculous. 

[00:26:47] Dr. Ali Zaidi: [00:26:47] Right. It is absolutely 

[00:26:49] Anna Jaworski: [00:26:49] But even more miraculous than that - an artificial heart. Talk to me about that. 

[00:26:54] Dr. Ali Zaidi: [00:26:54] Yeah. The artificial heart is an interesting concept. It means you have a pulsatile system, which is used for, basically replacing the patient's own heart and valves in the case of end-stage biventricular heart failure.

[00:27:10]They, create a device where both sides of the hearts and the valves are in essence, being utilized to a pulsatile device and sending blood out towards the lungs to enter the pulmonary artery and then into the body, through the aorta.

[00:27:25]Instead of focusing on only one side of the heart, you're creating a pulsatile model for both ventricles that is pumping out blood. So that's really the concept behind a total artificial heart. 

[00:27:38] Anna Jaworski: [00:27:38] It's just amazing to me. If you have an artificial heart implanted in your body, do you have to stay in a hospital or again, are you able to leave the hospital and have some kind of quality of life?

[00:27:51]Dr. Ali Zaidi: [00:27:51] A lot of patients who get total artificial hearts are going to be in the hospital but certainly it can be used at home.

[00:27:58]There's smaller sizes and larger sizes and there's a selection criteria based on body surface areas. There again, as you said before, they're used for exactly that - the concept is can you get these patients to transplant, which is a bridge to transplant?

[00:28:14]Or there was another concept that we haven't talked about it, but I'll just mention it here is let's call it 'destination therapy' which unfortunately what that means is that we can't get those patients to transplant but we can give them a quality of life which is probably better by using these assist devices than what their quality of life was prior to that - which is with severe heart failure.

[00:28:36]I don't want people to think that ventricular assist devices or total artificial hearts are always a bridge to transplant. Sometimes we use them for destination therapy, which means there is no transplant at the end of the road, but your quality of life is probably going to be a little bit better than what it was without this ventricular assist device or total artificial heart. 

[00:28:56] Anna Jaworski: [00:28:56] So is the cost so unbelievably high that that's the reason why more patients, who are listed, don't get one of these devices to help them along their journey? 

[00:29:08]Dr. Ali Zaidi: [00:29:08] That's a good question. The first thing to understand about implanting a ventricular assist device or total artificial heart is the patient criteria or selection criteria. Can a patient be eligible to get a ventricular system? So that's the first important thing to understand is that not every patient is eligible, not every patient is going to be able to get a ventricular assist device or total artificial heart implanted. And so that's an important thing to understand.  Just because there are heart patients with severe heart failure, doesn't automatically mean that they are candidates or eligible for a ventricular assist device.

[00:29:42]Why doesn't everybody get it? Because of that.  Not everybody is a candidate for many different reasons. And there's a whole selection criteria. There is a process, just the way you get to heart transplantation.

[00:29:54] There is a process to get to a ventricular assist device or total artificial heart, or what we call mechanical circulatory support. so there was a process. It's not a given that if someone has severe end-stage heart failure, that patient's going to get a ventricular assist device or mechanical circulatory support - that's number one. Number two is costs.  Cost is interesting because, just having done this for a while now and sort of been in some administrative roles, cost is interesting because these mechanical circulatory support devices are certainly expensive. Absolutely. I'm not going to say that they're not, but the cost should not fall onto the patient. It really shouldn't.  There will be layers to this, which is insurance comes in, hospitals comes in, sometimes philanthropy comes in, so there are layers to this.

[00:30:41]Yes, they are expensive. Absolutely. The third part that I will tell you, we don't often talk about this, there is a very, very extremely important part of this which is social support. If you are going to deem somebody eligible to have a mechanical circulatory support device, like of that, or total artificial heart, does that patient have the social support, the structure where he or she is going to go home with this apparatus and there'll be people around who are going to be able to help? This is not easy.  It is something that patients have learned to live with. 

[00:31:18] Anna Jaworski: [00:31:18] Yeah. Yeah. It's like a lifestyle change, isn't it?

[00:31:22] Dr. Ali Zaidi: [00:31:22] Yeah, absolutely. Absolutely. 

[00:31:24] Anna Jaworski: [00:31:24] Well, I'm going to have to have you come back on the program because I have a million more questions, but we're already out of time. I don't know how it happened. It went by so darn fast!

[00:31:36] Dr. Ali Zaidi: [00:31:36] Absolutely. 

[00:31:37] Anna Jaworski: [00:31:37] Wow. I feel like I have learned so much, but as often happens with me, the more I learn, the more I want to learn so I really do hope that in Season 16 I can invite you back on this show and we can talk more about some of the different areas that you are a specialist in. 

[00:31:54] Dr. Ali Zaidi: [00:31:54] Absolutely. It's been a pleasure. It's been a lot of fun speaking with you on these important points that you bought out so eloquently. I wish I could give you black and white answers, but sometimes I can't because we just don't have them. I am happy to come back and...

[00:32:10] Anna Jaworski: [00:32:10] Wonderful. 

[00:32:11] Dr. Ali Zaidi: [00:32:11] ... have more discussions, but thank you so much for having me. I truly appreciate it. 

[00:32:15]Anna Jaworski: [00:32:15] This has been a delight and you have finally given me some clarity on some questions that I've had. Thank you again, Dr. Ali Zaidi. This has been so informative. And I really, really do appreciate it. Friends, that's all the time for today. Please find our show and subscribe on Apple Podcasts or wherever you listen to podcasts. And remember my friends, you are not alone. 

[00:32:39] Thank you again for joining us this week.

[00:32:41] Conclusion: [00:32:41] 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.