Good afternoon everyone. Thank you for joining us today. My name is Cindy Bither, although it says Cynthia up there, I'm much more comfortable with Cindy. I'm a nurse practitioner and I work in Washington, D.C. I've been working with heart failure patients for the past 25 years and most of it has been with the advanced heart failure patients. My goal today is to help walk you through what it means to have advanced heart failure and the testing that happens and then what actually is available to people who have advanced heart failure. So let's get started. If you have any questions, please feel free to write them in on the chat section or the question section and I will try to answer them at the end. Unless something urgent comes up during the talk, I'll keep an eye on that. So let's start today with what is the purpose of the testing? So how do we get the diagnosis and why do we need the diagnosis, the prognosis, and then the therapies that are available? So the diagnosis and the purpose of the testing is that we want to make sure that we have the right type of heart failure and that there is nothing more we can do for you. The other issue is is this something that we can reverse? Because of course we all want to be able to help people keep their own heart and not have to do any of the advanced therapies. But for those where that's not the case, we need to move on. So let's first look at one of the tests. And if you have heart failure or have ever had a family member with heart failure, the echocardiogram is probably very familiar to you. What that is is a sound wave test. Some gel is put on your chest and a monitor or it looks like a microphone is placed over that gel and they run over your chest. With that we can see pictures. We can see how well the heart muscle is moving. We can see the size and shape of your heart. And one thing that's very important to us is actually how big the heart chambers are. So we do measure that because that makes a difference in what we actually plan for you for the future. Are we able to see that the heart is functioning well? But we also look to see how well the valves are functioning. Sometimes the heart stretches to the point where the valves no longer touch anymore. If you think about it, it's like you have a door in a door jam and the door jam gets wide, but the door stays the same shape. If you close the door, there'll still be gaps because the jam is too wide. So the other thing that we can look at is exactly why those valves aren't working. Because when your valves don't work well, the blood can actually go backwards. So your heart may squeeze, but not all the blood is going forward. And that's very important is the how someone feels. There's another type of heart failure called diastolic heart failure, which means that the heart is not relaxing well. And we can also see that on the echocardiogram. If the heart cannot stretch out to receive blood, you also will feel a lot of symptoms of heart failure. We don't actually be able, not able to actually look at the arteries within the heart. It's very hard for us to see blockages. What we can see is if one of the walls of the heart is not moving as well as the others. And we usually think that's due to blood flow. So we can get a suspicion of blockages, but we don't know definitely if there's anything there. The other thing that it can show us is prognosis. If the chambers of the heart are very enlarged, it's very hard to get those back to normal with just medications. We absolutely will try. We'll get you on the best medication regimen that we can. But if it's very, very wide, it means that this is not something we can sit on and wait. We have to pay attention to it. The other study that's not here, but it's called a cardiac MRI. And some of you may have had that. It's when you go into a tube and there's actually some contrast that's put into your vein. And then it lights up within the heart when we take pictures of it. With that, we can see whether or not there's abnormal things inside the muscle itself. Sometimes people have diseases where the protein is misshapen and it gets collected within the heart muscle and takes over the ability of the muscle to work because there's bad things in there. And so the MRI will help us to figure out whether or not there's something else going on besides just a weak muscle or potentially that you've had a heart attack in the past. So we do do that on quite a few people when they've just got diagnosed. The cardiac catheterization, which is what you see here, is done on a lot of people, especially people with first-time diagnosis of heart failure. The coronary angiogram, which is what you see in the pictures, on the right-hand side, it shows good blood flow throughout the whole thing. If you look on the left-hand side, you can see where there's like a block in the vessel kind of goes and then stops. You see some areas where there's no dye and that vessel that was fully showing would die. That's a blockage. And that's what they try to put stents in or try to bypass around that to get the blood flow so that it still gets to the heart muscle. As you can imagine, if that blood vessel is blocked off, no blood flow goes beyond where the blockage is. There's no way to get blood down the rest of that vessel. And unfortunately, the muscle that's beyond a blockage will die or will have severe damage due to the lack of oxygen and blood. And so we need to make sure that on everybody, we have a look at those blood vessels because just in case you're not feeling like you have chest pain, or just in case you have potentially diabetes where you don't feel the chest pain, maybe there's something we can fix there. And maybe if the tissue is not dead, and we can get blood flow back to it, the tissue will revive itself and be stronger again. And some of your symptoms may get much better. So this is why we usually do a coronary angiogram on everybody. The nuclear stress test is what's sometimes done before we do the angiogram. This stress test is where they also inject you with dye. And they look to see what happens when they stress your heart. Does the muscle take up the dye when it's under stress? And that simulates you walking or climbing the stairs or doing activity that normally would demand more oxygen, but your heart just isn't producing it. So you would get those symptoms with just the dye load rather than making you walk a treadmill or something because it will cause the stress to your heart. Should that be abnormal, then we definitely would send you on to a coronary angiogram. But some people go straight to the angiogram. So then the next one, the next test that we sometimes do is called a cardiopulmonary exercise test. Especially if you're being looked at for advanced therapies, this test is very important if you can do it. It really looks at the ability of the heart to get oxygen to your tissues when you are doing more activity. So some people feel really good when they're not doing anything. So they can sit comfortably around the house. But when they try to climb the stairs, carry groceries, or walk the block, their legs either seem very, very tired and fatigued, or they get very, very winded. And sometimes that's because of low blood flow. But the other thing that can happen when you have a heart failure is you can just stop doing activity like you used to do. And you can get deconditioned or your muscles need more oxygen to do their job because they're not well trained and they're not fit anymore. And so it's hard to just tell that when somebody comes into the office and we ask them questions and they tell me that they get short-winded or that they can't climb the stairs without stopping anymore, then I need to figure out is it just that their muscles are weak and they can't do as much as they used to? Or is it that the heart's just not able to get enough blood to those muscles for them to do the job that they're supposed to do? This test will tell us that. You can see the gentleman in the picture has a mask on his face and he's breathing the oxygen from the room and then exhaling it into that mask. And as we ramp up the activity on either the bike or the treadmill, we're asking the heart to do more work, to get more oxygen to the legs, to keep them moving. And as he exhales, he produces more and more carbon dioxide. So we know during that test when somebody actually has their heart's done all that it can. It's working at its maximum capacity. It's getting as much blood to the tissue because of how we're analyzing what they exhale. And it'll tell us when the heart is done. And if there's a certain number it has to reach, if it doesn't reach that number and the person is extremely fatigued, then they're probably deconditioned or they have blood vessel blockages in their legs, or there's some other reason that there's a problem. But if their heart has reached its maximum and we can see that, and they still have the symptoms, that is probably a problem with the heart itself. And that actually gives us a prognosis for the future. That's been, this test is considered the golden test of what to do to predict the future for people with heart failure. The test has been done over and over again. And every time it's really shown us that how you do on that test will predict how well you're going to do over the next year or two, keeping the heart that you have and nothing else changing. You get a statistic or an odd of about your chances of living over the next 24 to 48 months, just specifically to the heart failure, nothing else involved. And that's important because we have to use that number to decide when it's time to put somebody on advanced therapies, or at least offer them and let the person decide if they want them or not. And so it's not a long-term prognosis, but it's very good over the short term over the next year or so to help us figure out the odds of when we should offer somebody a test. This is, if you're going to a center where they do advanced therapies, a hospital that would either do a transplant or a heart pump, which we'll talk about later, most of them have this test available and will actually have you do that test to help figure out whether it's time to actually look into advanced testing or not. We can do other tests like a six-minute walk test or a regular treadmill. And there is a prognosis with that, but it's not the gold standard. It's not the one that gives us the best prognosis. But if you don't have that available in your local hospital or your local office, it may be something that the doctor asks you to do. A six-minute walk test means they've marked off a certain area in a hallway and they have you walk for six minutes solid between the two points in that hallway and see how far you go. The distance you go is actually what makes things better. The right heart catheterization is another thing that we look at. It's a test that we do in the cath lab and some of you might have had it if you have heart failure. This test does not involve any dye. It's actually a test where we put a cannula or an IV up into the vein of the body, either in the neck or the groin, sometimes in the arm, and we run a catheter up and down into the heart. And that catheter goes through the chambers on the right side of the heart and then goes actually out into the blood vessel in the lung. What we use that for is to figure out blood flow within the heart and pressures within the heart. And that's very helpful, helping us diagnose how bad your heart failure is. And it also, again, gives us a prognosis of how well you're going to do and really helps guide our therapies. If you have advanced heart failure, you probably have had more than one of these because sometimes as we change therapies, we like to see if it worked. Or sometimes you go to the coronary care unit and we leave that tube in overnight or for a few days while we adjust your therapy to see what happens to those pressures. It's a hollow tube. It's not thick. It basically just threads up into the blood vessel that threads right into the heart. And when we're done, we take it out. It's not something permanent that we leave in there. But there's a little balloon at the end of it that helps us get the pressures within the lungs of the heart. And so we actually look at what's called cardiac output. Cardiac output is how much blood circulates through your body per minute. And we know what the average is. And we know what the average is for someone your size. And that's very important because somebody six foot tall needs more blood flow than somebody three foot tall. And so we need to average that per your size. We can actually take a look at how much blood is flowing and figure out whether or not it's enough for your body. And that helps us figure out whether or not you need advanced therapies. If your organs are not getting enough blood flow, they get damaged. And so we can't wait until that happens. We have to take care of the blood flow before we get to that point. Again, it's a hollow tube that's passed up from a vein into the heart, and actually through the heart and out to the artery that goes to the lungs. And we get the pressures throughout all those systems. We can measure forward blood flow, we can actually measure the pressures exactly. And then we can adjust things according to those numbers, either by leaving the tube in until we've got the medicine exactly where we want it. Or if we have, if we take it out, then we can adjust the therapies and maybe temporarily take you back and put the line back in once again. But that is used very often in advanced heart failure for people that are showing us that the circulation is not quite where it needs to be. For blood testing, I think the thing to know is that we use that to determine how the rest of your organs are doing. So we can take a look at the liver, and the kidneys, and sometimes other organs that we draw blood with. But it's very important for us to do that. And why is that? Because I'm really just looking at the heart. Well, I need to know that I'm not hurting the kidneys, or that the liver function studies are not getting worse. And so that's why we draw blood at all the time. It's really something that we use while you're on your drug therapy to keep an eye on your other organs. There's also things that we look at with stress inside the heart that can cause hormones levels to rise. There's something called BNP. And BNP really means that the heart has recognized that there's extra fluid on board. And BNP is an actual hormone that's secreted that makes the heart try to get rid of more fluid. And that's a level that we actually draw in your system. And it can tell us how much pressure you have within your system. And so we draw that and keep an eye on it. Pretty much every time you come to the hospital, some people get it drawn when they come to the office. It'll give us an idea of potentially how much fluid you have on board. Or if not, at least how much pressure is within the heart. There's two different types. There's the BNP itself, and then there's the BNP in a different form as your body produces it that we look at. And hospitals have different levels that they have, that they read. Some hospitals do BNP and others do the NT pro BNP. So you need to know that you're comparing apples to apples and not apples to oranges because the numbers themselves are very different. But they're measuring the same thing essentially, but it just depends on where it is in the process of the body building it. There's other blood testing that we do. There's a marker now also that we draw called Galactin-3. It's not widely used commercially, but some centers are using it. And it shows us how much scar there is in the heart. And why is that important? Well, the more scar you get, the less the muscle can squeeze and relax. The tissue, normal tissue is taken over by scar tissue, which is stiff. And so the heart can't function as well. So if you've had a heart attack, for example, that healthy muscle will die and then become scar tissue because it's not, it's dead tissue. It's not getting oxygen anymore. Sometimes scar tissue happens just because of the bad hormones that circulate in your blood with heart failure. When you're first diagnosed with heart failure, your body sends off these hormones in your system that make you feel good. But over time, they do damage to the heart. The medicines that you take, the ACE inhibitors or the beta blockers or the spironolactone, those are all to suppress those hormones so that they stop doing bad things to you. They're not for blood pressure and heart failure patients. They're to stop bad hormones. The spironolactone, if any of you are on that drug or a plurinone, has been known to be able to sometimes reverse some scar tissue and make things better. So galactin-3 can measure that. And when used at the same time as a BNP has been shown to show us how is the therapy working. If we put you on medicines and we get the medicine doses up to where they need to be, according to what the studies showed us they should be, then sometimes drawing that blood work can show us whether or not the medicine is actually doing what we're hoping it's going to do. The other tests that we do, we look at thyroid studies. If your thyroid is either too active or underactive, you can get heart failure from that. And we can fix your heart failure by fixing your thyroid. Some people produce too much iron and the iron gets stored up in the actual muscle. It invades the muscle and can have damaged organs, not just the heart, but other organs also. So we look to see if you're producing too much iron or too little iron. What if your iron levels are low so you don't have a good buildup of what carries oxygen? You need iron in your system to help carry oxygen throughout your bloodstream. We look for HIV. We know that HIV can cause a weak heart. And some people have it, don't know that they have HIV and we find it when we're looking at them for heart failure. So we always test for that to get people on the therapies to try to prevent further damage. And then hepatitis B and hepatitis C, those can also cause some problems, usually with the liver, but then it can make a difference as to what we can offer someone for advanced heart failure therapies. So we need to know whether or not they actually have those in their bloodstream. And so most everyone who's starting to be looked at for advanced therapies will get all this different blood testing. A heart biopsy. So it sounds scary and it is an invasive procedure, but what it is is we go into the chamber of the heart. So we go in a vein, we put an IV in the vein and run it down into the heart and then run what's called a biopton in there. Those of you that have ever done any outside yard work, if you've ever seen a post hole digger, it looks like a very small version of a post hole digger. It opens up and clips off a tiny little piece of the heart muscle that we can look at under the microscope. It's smaller than the head of a pencil. I mean, it's very, very small, like the tip of a pencil, but they do look at it under the microscope and they put special stains on it because we need to see if there's a problem within the muscle. Some people can get, like we talked about earlier, diseases that invade the muscle and start taking over the muscle space and so the heart can't work normally. And if we can find out what that is, sometimes we can treat it. The other thing we see is whether or not the cells themselves are abnormal. There's something called giant cell myocarditis that's a rare disease, but you need to find it to be able to treat it. And so we look for things, again, that are potentially fixable or things that would give us a reason as to why you might have heart failure, especially in people that don't have blockages in their heart. If you don't have a blockage, then we have to try to figure out why you have heart failure because it's not due to blood flow. It's due just to a primary muscle problem. So the question is, what is the muscle problem? And a lot of times we can't find it. It's called idiopathic. I don't know what caused it, but sometimes we can find it by looking at an actual piece of the tissue and figuring out what it is. And because every disease would probably need a different therapy to try to fix it or control it. So prior to your heart failure diagnosis, all these tests are done. I mean, you've been diagnosed with heart failure. It really is your prognosis that we're looking for now. So where does the future lead? What therapies can we do in that? And then is there anything else we can offer? Is this a disease that we found runs in families? Maybe your family members need to be tested. There's a lot of information we can get that. So once you've been diagnosed, sometimes you've had some of these tests. And so we follow you over time. It's not like a lot of people, it's not that the minute you get diagnosed, oh my goodness, we have to look towards the future, but eventually it may come to that. The natural course of the disease of heart failure is that things progress. So we look at you over time. So initially the echocardiogram is done. We don't do it again unless there's a change in symptoms or if we've gotten you up to maximum therapy just to see if it got better because we have to know what therapies you need according to what your disease state is. Some people need to get a defibrillator. And so we'd need to get you on medicines and then re-look at the echocardiogram to figure out whether or not your squeeze function is still low. So we may be doing it more on a routine basis. And then blood testing routinely. Every three months, we usually look at blood work, especially the kidneys because sometimes the therapy we give can actually make changes in how the kidneys are working. And then with coronary angiogram and stress testing, if it's suspected or they get new chest pains, maybe we should do another coronary angiogram. If you've had stents in the past, maybe the disease has progressed and maybe we need to see if we can put stents in again. The exercise testing. So if you've had the exercise testing and it showed that you did above the level of where we would need to be worried about putting you on a heart transplant list or looking at you for a heart pump, that doesn't mean we never should do the test again. We really try to do it about every three to six months, sometimes just annually, just to make sure that you're not getting worse and don't realize it yet. We need to catch things early. That's the whole goal. And the right heart catheterization, we do that when we don't understand what's going on. If you have a lot of extra fluid on board and I can't get the fluid off, sometimes I have to actually go in and look at the pressures and maybe it's the squeeze function that's not doing well. Or maybe you're feeling pressures are not high. Maybe you've just gained regular weight and it's not fluid weight and I'm trying to take fluid off you and potentially not doing the right therapy that you need. So we use that when things don't make sense. So now we're getting to the point where we're talking about advanced therapies. What are those? So with advanced therapies, there's really only three available to people who now are at the point where I either can't keep them out of the hospital, they're readmitted quite frequently, they can't take the medicines because their blood pressure is too low, their quality of life is bad to the point where they can't get out of bed and they can't do what they want to do to enjoy life, then maybe this is the point where we need to look at advanced therapies for people. What's available? Heart transplantation, changing out your heart for a new heart, the ventricular assist devices, that's called mechanical circulatory support. And there is a third one called palliative care, which we'll talk about later. But those are basically the three things available in the advanced therapy world. So there is a paradox, meaning how do you choose when you're sick enough to need it but not so sick that you wouldn't survive the therapy? And it's a very difficult decision to make sometimes, which is why we do all that testing. We really wanna make sure that before we give somebody a new therapy or offer them advanced therapies, that we know that we're not doing harm. Our goal is to do good. If you are too sick to tolerate the surgeries that you will need, then we're really not doing you a benefit by offering them to you because you won't do well. So how do we get it so that you're well enough to go through the surgery at the right time without doing it too early or waiting for it to be too late? For transplant, those are not available off the shelf. You wait for a donor and there's limited availability. There's more people that need transplants than there are hearts available in any given year. And so we have to choose very carefully who is offered a heart transplant. We have to make sure it's somebody that will take good care of it and that it's somebody that can actually physically handle it. And we'll talk a little bit more about that. But I also wanna make sure that it's not somebody where they've waited too long and couldn't make up their mind and now they're too sick. And they would not benefit from the surgery because something else is not working well. It really has to be just the heart that's not working well. If the decision is put off and the kidneys start to fail because of low blood flow, then you're really in a dilemma because I'm only gonna replace the heart. The kidneys are now damaged. There are places that do heart kidney transplant, but they're not that available and it's a much harder surgery to go through. So the goal for any team that's working with advanced therapies is when is the right time to put it in so that you'll do well enough with the surgery, but you won't be too well and we won't be jumping the gun and doing it too early. We want you to survive. We want you to do well. And we want you to have a good quality of life, which you won't have if we wait too long. So the evaluation, there's really major components of it. The first thing is we look at the heart itself. We talked about the testing that's done and that helps us decide prognosis. How well are you going to do over the next year or so? Then I also talked a little bit about this. I have to make sure your other organs are okay because if any of the things that we do, you will need to take medications. Are your kidneys well enough that you can take some of the transplant medications? They do have an effect on kidneys. And how tragic would it be if we give you a heart transplant and then one of your other organ system stops working? So we make sure that everything looks like it's good to go. Can you survive the surgery and will the other organs do well after the surgery? That includes the lungs. So if you have a bad lung disease from either smoking COPD or asthma for years, and we don't think you do well on the ventilator, then it would be very hard to put you through these major surgeries if we didn't think we could get you off of the breathing machine. And so there's a lot of testing that's involved, but there's a message to our madness. Again, we don't wanna offer you something and then have you not do well afterwards and have a much poorer quality of life than you would have had if we'd just had you keep your own heart for whatever time was available. But we also look at many things outside of just the patient themselves. People going through these surgeries need a support system. And the reason family is in quotes is that sometimes people don't have immediate family, but they have a very strong church support group or a social support group that will rally and stand by them when needed. But everybody needs somebody. After major heart surgery, you can't drive for six to eight weeks and you need to be able to get to your appointments, need to be able to get to the grocery store. There's things that you have to be able to do. So we could technically do the surgery, but then you would not do well because you can't do the things that need to be done in order to keep alive after the surgery. The psychosocial, we look to see, have you have any substance abuse? It is a government restriction that anyone who's been smoking or had alcohol or drug abuse problem within six months of a transplant cannot be transplanted. We have to see that there's been abstinence you've been able to stop using those substances for six months before we can even list you for transplant. And so we work with it. It's not a punishment. If you're smoking and start heart transplant medicines to keep you from rejecting your heart, and you've been smoking recently, there is almost a guarantee that you will get a lung cancer. And so we're not doing this out of punishment, we're doing this again so that you can live longer. And we wanna get you help. If we know that you're having substance abuse problems, we want to be able to find you the help that you need to stop so you can be a candidate. So everybody rallies in, social workers, financial coordinators, everybody that we need to help you be able to get the therapies that you need and deserve. We look at finances, we look at your insurance because some insurances cover transplant better than others. So there's co-pays. So maybe we need to help you get a secondary insurance. Maybe you need to go to a different center because your insurance has made a deal with a certain transplant center that they'll keep the cost down to you as the consumer if you go to this certain center. So all that has to be looked into. Do you have good prescription coverage? The transplant medications are very expensive. We wanna make sure that you can get them after you get a new heart. Or what benefit would it give you if we gave you a new heart and then you couldn't get the medicines? Somebody is just asking now about information about what hospital or clinic can perform transplant. There are some in each state. Some have more available than others. There is a website, it's called UNOS, U-N-O-S. It's the United Network of Organ Sharing. And they do have a list of all the centers that are available. And I just bet if you Googled online heart transplant in the state you live in, that a group would come up. Not everybody does them, it's limited. And so you would have to look at the one closest to you. But again, timing is everything. So if you've been very sick with heart failure, and it had irreversible organ damage, it may be too late. But can we bring can we bring it back if it's just had some organ damage because it had low blood flow? Maybe we'll trial you on a certain medicines that can help your squeeze function of your heart and see if we can get some of that kidney function back. Maybe once you get some oxygenated blood, that things will get better. If you've been malnourished, one of the other things that happens when your blood flow is low, is that your stomach and your gut don't absorb the protein of the food that you're eating. And you can lose weight without even trying just because food is not getting absorbed. You can get muscle organizations and muscle weakness or infections because your nutritional status is so bad. And so at this point, these are these are things we need to see if we can reverse or make better. We don't want you to get a transplant or get an LVAD and get then get an infection that actually gets in your system and can kill you. So again, we look to make sure that everything's good to go. We make sure that things are not happening too soon. Transplants have a limited life in them. Now people are living longer with heart transplant than they used to. But there's an average. There's an average of about 12 to 15 years of a heart transplant patient surviving afterwards. But we all know how averages are made. Some people live shorter than that. Some live longer. I have somebody in my center who's actually had a transplant for 30 years, but I have others that we've lost early. So I don't I can't predict that. But one thing I know is that I don't want to give you something like a transplant before you need it, because that just takes away two years of life after you get it. The other thing I like to tell people is this, you need to use whatever therapies are available to you. Keep going. Keep going and keep alive and keep your yourself as well as you can, because you don't know what's going to get invented within the next few years. You may actually, there may actually be something coming down the pike that you may not know about to offer you new hope in a few years. So the other thing is maybe you need a transplant. And we talked about the fact that transplants are And we talked about the fact that transplants are not off the shelf. So maybe we need to bridge you until a heart's available. In some centers, you can use IV medications and wait in the hospital to try to get a transplant sooner. But for people with common blood types, like an O blood type, there's a lot of people on that waiting list. And so sometimes we have to put a temporary pump in. And this pump does the work of the left side of the heart. The right side of the heart collects the blood and gets it to the lungs. The left side of the heart is what pushes it out into your system. And sometimes we have to bridge people with that pump and have them live on that pump until their heart is available for them. The best candidate, we want people to be the best candidate they can be at the time of transplant. So say you're a little malnourished and your muscles are very weak. And we're worried about infection if we transplanted you because we would have to drop your immune system. So at this point, what we would do is we would put the pump in you to get you in the best condition that we can get you in. So the waiting list, the waiting list has just changed as of last October. The statuses are now changed. And so when you are offered a heart, it's according to what status you fit in. I don't expect you to understand the lingo of all this, but you can understand that the sicker you are, the sooner you'll get a heart. And the center that you get listed with for transplant will help figure out what status you're in. We changed that on the computerized system. There's a nationwide look for organs. It's not something that we decide yes or no. And it's taken totally out of the hospital who has the person who needs the heart. We don't have any say in that. You go into a computer-based program. And then nationally, if a donor becomes available, they are matched by the area that they live in. So we try not to have it so that's a long distance away from where the donor is. We match it by size. We match it by blood type. And then we match it by sometimes people get things called antibodies from previous transplants. Women get them when they have babies, just to make sure that the risk of rejection is low because we don't want to give you a heart that has something that when it goes in your system, that your body rejects it because that antibody is there waiting on the surface. Those are more complicated questions. And if you do need to go on the transplant list, they will go over that with you. But all of that to say, there's a method to the madness. It seems complicated at times, but hearts are not available. You're on a list and you wait. So people that get heart transplants, we're always balancing rejection versus infection. We want the anti-rejection medicine to be high enough so that your body doesn't really recognize that heart as a foreign object. But if we have it too high, then you're very much at risk of getting infections. And so you get things called biopsies, just like we talked about, people have biopsies where they're diagnosed with heart failure. You get them after transplant, very, very frequently at first, while we quickly adjust the medicines. You're on medicines for life. This is not, you know, get a transplant and then, you know, I don't need any follow-up and I don't need any medicines. You are then tied in with a transplant center for the rest of your life. You'll be on at least one medicine, sometimes two for the rest of your life. Most centers now are trying to get people off the steroids, but the calcium urine inhibitors, either tacrolimus reciclosporin, as well as mycophenolator azathioprim are always there. The immunosuppression issues, again, that they increase risk of infection, but they also increase risk for cancers. So you're going to need screening very frequently after a transplant to see if you're developing a cancer so we can treat it early. You have to understand that these medicines can be toxic to the kidneys and there's other side effects. Steroids can cause weight gain. Some of these drugs can cause diabetes. So all of these can be issues. So some people say, well, why would I do that? There's a lot of risk. Well, we don't, that's why we don't offer it to someone until we know that their risk of not being alive in a year or two is very high. If that's, it's a very high risk that they will die soon, then you take the chance of a heart transplant because we, there's a better risk that you'd be alive with a transplanted heart at that time. Again, it's frequently frequent visits for the first few months. You're not very far from the hospital. Then as the visits spread out, then your freedom to roam comes back. You can start traveling again. If you feel like it, you go back to work. The goal is to get people back to work and back to a functional life. You will get frequent blood draws. We'll adjust your medicines, you know, frequently as we look for the drug levels we need. But for the people that get heart transplants and live, it's worth it. And so you have to decide in your own mind, whether it's worse, the risk or not. If you don't get a transplant and you have the ventricular assist device instead, there's some things to know. This heart pump, if we go back, let me pull up the slide with the heart pumps. These are the heart pumps. And you can see that there is things sticking out of the heart. And those are grafts that actually the blood comes out of a heart, circulates through a pump, and then it, the pump pushes it back in to the aorta or the main blood vessel that goes back out to the body. So it takes over the work for the heart. The one on the far right is actually takes over the work for both sides of the heart. That's a totally artificial heart. So back down to the LVAD and what that requires. You're on blood thinners for the rest of your life. You're at risk of clotting the VAD if the blood thinners aren't high enough. You're at risk for bleeding if the blood thinner level gets too high. So there are risks. There's a driveline. There's an electrical wire source coming out of your abdomen or your high chest. And you will need to take care of that and watch for infections and do driveline dressings a couple times a week for the rest of the of your life with that pump. We need to watch blood pressure control very carefully. You don't have a pulse with this. So there's special ways of taking blood pressure. But we need to make sure your blood pressure is well controlled because the studies have shown that high blood pressure on a pump is a high risk for stroke. And we certainly don't want that to happen. You can travel. You can have a decent life on an LVAD. You just learn to live with it. You learn that you have to bring batteries with you. There are car chargers. So if you're going on the car trip, you can charge your battery while you're traveling. But you just need to know that it is a lifestyle change. If it is something that you want and a better quality of life, it's worth it. But there are risks and your center will go over all of those with you. For palliative care, for those people who don't want advanced therapies or too sick to get them, palliative care is involved in heart failure because they help you figure on your your goals. What are your goals now in this point of your life? They help you figure out your wishes. If your heart was to stop, would you want CPR at this point? Do you still want your your defibrillator to fire? Some people choose to have it turned off. Do you still want to be admitted to the hospital if things come unstuck? Or would you rather stay home, treat the symptoms at home, and pass away at home? So what we try to get for people at the end of their life is their goals of care. What is it that you want us to do so that we don't do things that are not what you want us to do? So in conclusion, advanced therapies, they include the ventricular assist devices and heart transplant. We try to make sure that you're sick enough to need it, but not too healthy so that it's too early. And we want you healthy enough that you would still benefit from the pumps or the heart transplant. We have to do a big evaluation to make sure that this is the right timing and that your other organ systems are okay. Again, each therapy has advantages and disadvantages, and you're the only one that can make that decision if they're offered to you. Then is this what you want or don't want? Make sure that you talk with your team as they're going over all of this with you, the goals of you and your family, because it's teamwork and you are the center of that team. And we won't know what you're thinking or your family is thinking unless you tell us. So please, in conclusion, as we talk about advanced therapies, remember that you're the center of the care and that you're the one who guides the care. Just so you'll know, there's other resources available on the HFSA website www.hfsa.org, and you can go on there and look for other patient activities. And also that you'll know that this was made possible for grants from Amgen, AstraZeneca, and Cytokinetics. I do have one question here about echo. How does the echocardiogram test for velocity of blood? Well, what they look at is they don't as much look at velocity as they look at the ability of the heart to squeeze, and they actually can measure the muscle in different positions. And so they can see the velocity of blood or they can measure it as it goes through the valve only, but that's more to look at how well the valves are doing. So the velocity or the amount of blood is really measured through that right heart catheterization with that tube. And if I didn't answer that correctly or enough, please come back in. And then an ICD in advanced therapies. A defibrillator itself is not an advanced therapy. A defibrillator itself is offered to people who have ejection fractions 40 percent and less according to the guidelines. That most people get that just to prevent the risk that it's not considered an advanced therapy. Advanced therapies are the LVAD or the totally artificial heart or a transplant. And so when you're talking about ICD therapy, it's more to prevent you from sudden death, but it doesn't actually make you better. It's just sitting there. All it does is look for a bad rhythm. It brings you back to life should you have sudden death, but it's not potentially advanced therapies. I will say though that if you have an ICD and it starts going off very frequently, then you should be looked at for advanced therapies if they can find no other source. Sometimes it can fire frequently just because your heart is so weak and you're what we call decompensated. Things are not looking good inside your heart and it's firing because your heart is struggling so hard. But it in itself doesn't fix or do anything except look for bad heart rhythms. Okay, do you send patients for palliative care consult before sending them for advanced therapies? We actually do it simultaneously, at least at my center. Our palliative care team likes to know that we have told the patient what it is they're being looked at before they go talk to them so that they can have a better conversation with them about what they would want. So we see them first so we can tell them what the advanced therapies are, and then we have them meet with palliative care so that they can make a better decision. Okay, can you share what criteria or what are the things to look for when considering? So things that I look for when in patients, frequent hospitalizations. So if you're coming to the hospital more than twice a year for heart failure problems, you should be looked at. If you are taking good medicines and suddenly your blood pressure starts to drop and you no longer can take those medicines because your blood pressure is too low, that's a bad sign and you need to be looked at for advanced therapies. If your kidney function is getting worse and they're telling you you have to stop medicines because your kidneys are getting worse, you should be looked at for advanced therapies. If you're having your defibrillator fire frequently, you should be looked at for advanced therapies. We also think for people that have a their quality of life is bad. If they feel like all they can do is sit in the chair and watch television every day, then they should be looked at for advanced therapies because sometimes it's depression but sometimes it's real. And so you have to figure out which one it is and that's where that exercise test becomes very important to help us figure out are they deconditioned or they just don't push through or is this really that the heart isn't not getting enough blood flow there. Those are the main things we look at. Other things that we as a team look at is the size of the heart, whether or not we can get fluid off of you easily. So I hope that that answers some of your questions about when to refer. Somebody did ask about whether or not they can use the slides with sharing with their patients and HFSA just said that they can as long as you just give attributions that they're from the Heart Failure Society or you can just go online and they can listen to the full webinar. I did get asked about age limit for transplant. It can be different at different centers. My personal center the age cutoff is 70. We have done people a little bit more than 70 but what I'm talking about is 70, a good 70. So if you're 72 years old but you have the you know but the rest of your body looks like a 60 year old we may consider it but if you're 70 years old but the rest of your body looks like you're 90 years old it's not just about the chronologic age it's more about how you look physically when you come to us at older ages but 70s technically would technically be our cutoff. I just wanted to say thank you all for joining today and thank you very much to our presenter. Cindy this was great and very informative and we really appreciate your time and attention.

advanced therapies

heart failure

diagnosis

echocardiogram

cardiac MRI

heart transplantation

ventricular assist devices

palliative care

evaluation process