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Lessons from the wrong side of the heart
2 Plays1 year ago
February 7-14 marks the observance of Congenital Heart Disease Awareness Week. In this podcast episode, Dr. Sergio Zanotti provides a unique perspective on adult congenital heart disease, drawing from his journey as a lifelong patient. He offers reflections shaped by his own experiences with complex adult congenital heart disease, including insights gained from a recent medical procedure that granted him a firsthand view of patient care in the ICU.
Additional resources:
ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease. Circulation 2008: https://www.ahajournals.org/doi/pdf/10.1161/CIRCULATIONAHA.108.190690
The Bell Curve. By Atul Gawande. The New Yorker 2004: https://www.newyorker.com/magazine/2004/12/06/the-bell-curve
Website for the Adult Congenital Heart Association: https://www.achaheart.org/
Books and music mentioned in this episode:
Montaigne. By Stefan Zweig: https://bit.ly/4gEOVP2
The Heart. A Novel. By Maylis De Kerangal: https://bit.ly/41ehqin
The Essays: A Selection (Penguin Classics). By. Michel de Montaigne: https://bit.ly/3EvFwvW
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Transcript
Introduction to the Podcast and Career Opportunities
00:00:06
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Welcome to Critical Matters, a sound podcast covering a broad range of topics related to the practice of intensive care medicine.
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Sound provides comprehensive critical care programs to hospitals across the country.
00:00:19
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To learn more about our programs and career opportunities, visit www.soundphysicians.com.
00:00:26
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And now your host, Dr. Sergio Zanotti.
Personal Experience with Congenital Heart Disease
00:00:33
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February 7 to 14 is Congenital Heart Disease Awareness Week.
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In today's episode of the podcast, entitled Lessons from the Wrong Side of the Heart, I will share some reflections based on my experience as a patient.
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I have been a patient my whole life with adult congenital heart disease and recently had the experience of undergoing a complex procedure that gave me time to reflect on different topics related to the practice of critical care medicine,
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So in order to bring awareness of adult congenital heart disease to our listeners, I will share a
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a little bit of my personal history and some reflections based on some recent experiences.
Overview of Adult Congenital Heart Disease
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What I hope to cover today is a little bit about adult congenital heart disease, just give you a little bit of an overview on why it should be on the radar of every intensivist, but also tell you, I mean, more specifically, how that has played a role in my journey as a patient.
00:01:39
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I want to talk a little bit about clinical excellence, some reflections on what it means to be world-class.
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And finally, I want to conclude with some very concrete bedside lessons that I have learned recently being a patient and how they can maybe help me become a better intensivist, but hopefully also help our listeners reflect and perhaps do a better job at the bedside.
Understanding Congenital Heart Disease
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So with that, let's start with some thoughts on adult congenital heart disease.
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Over 40,000 babies are born in the US every year with congenital heart disease.
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And obviously the complexity and severity of these congenital heart disease is quite wide.
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One in 100 babies are born with congenital heart disease, which is actually the most frequent congenital problem in the United States.
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Congenital heart disease is the number one birth defect worldwide as well.
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And something I was not aware of, twice as many children die from congenital heart disease than from all forms of childhood cancer combined on a yearly basis.
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So clearly the impact on newborns is quite dramatic.
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There are more than 40 different types of congenital heart disease, and there's no known prevention or cure.
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So awareness and early recognition is extremely important.
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Now,
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All these congenital birth defects over time, as they are addressed with better medical care, medical surgical interventions, have created a very special population of adults with congenital heart disease.
Challenges for Adults with Congenital Heart Disease
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And what's very particular about these patients, of which I am one, is that
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They undergo very complex procedures early in life, have very unique physiology.
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which often I think confuses adult critical care, cardiology, and internal medicine, anesthesia, physicians, and require very specialized care.
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So there are various types of congenital heart disease, such as aortic valve stenosis, coarctation of the aorta, Epstein's anomaly, patent ductus arteriosus.
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There's things that are a little bit more complicated.
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such as single ventricle defects, tetralogy of fallout, transmission of the great arteries, and many, many others that over time are now being treated with different types of surgical interventions.
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We are seeing not only in adult congenital heart disease, but also in many other congenital diseases that patients are living longer and longer,
00:04:39
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and encounter care with adult clinicians who may not have the expertise on the specific anomalies and the subsequent physiology that a lot of these surgical interventions have caused.
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So really, I think there's been a slow development of a growing population of patients who really require very specialized care.
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And I, for most of my life, have seen pediatricians or pediatric hospitals.
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When I was 40 years old, it was the first time I saw a specialist in adult congenital heart disease.
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It was life-changing.
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And I do know that in a lot of our ICUs,
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there are patients that come in with adult congenital heart disease that might have very unique physiology.
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And being aware of that and the type of care that they need, I think, is very important because most adult cardiologists or intensivists don't really know what they don't know and may do a disservice to some of these patients.
Dr. Zanotti's Personal Journey
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So going back to my own personal story, I've been a patient my whole life, been a physician half of my life.
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And I was born with transposition of the great arteries, which is a complex cardiac anomaly.
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And basically what happens is my pulmonary artery comes out of my left ventricle and my aorta comes out of my right ventricle.
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So when you're born, you have two parallel circuits of blood.
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One is oxygenated blood going to your lungs and one is deoxygenated blood going to your brain and the rest of your body.
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And obviously that is a problem.
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So I was a blue baby cyanotic.
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And back when I was born, it didn't have, I mean, prenatal echocardiography.
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So they did a cardiac cath and perforated my foramina ovallis so that there would be mixed blood.
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And I would get some oxygenated blood to the systemic part of my circulation.
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Now, in 1970, when I was born, it was right at the cusp of when the mortality for this particular congenital heart disease was improving significantly thanks to new procedures that could correct the anomaly.
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So in the late 60s, 80% of kids born with transparameter-grade arteries would die by age 5.
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In the early 70s and mid-70s, that number was reverted, and 80% of the kids who had surgical intervention would make it to the past 10 years old.
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So really, I mean...
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There was a transformation in the care.
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At that time, what they were able to do was called an atrial switch.
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So basically, I had something called the must-start procedure in 1971.
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And basically, what they did is they created a baffle that connected...
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my right atrium to my left ventricle.
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My pulmonary artery would come out of my left ventricle, take blood to my lungs, bring it back to my left atrium that through another baffle was connected to my right ventricle from which my aorta came out and pumped oxygenated blood to my body.
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So basically they did an atrial switch and I, because of this procedure, have a systemic right ventricle.
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As you might imagine, my x-ray is quite impressive and my echoes are quite impressive with a very, very large right ventricle.
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So throughout the years, common complications of the muster procedure include arrhythmias from the baffle and then dissecting the baffling.
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the atrium also obviously heart failure with a right ventricle that has a systemic and duties or systemic pressures to pump again but uh a
00:08:50
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I was very fortunate.
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The person who did my surgery in 1970 was one of the pioneers of cardiac surgery at that time.
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And he told my parents that even though the tendency was to wait for kids to get older, he felt that the earlier they could operate, the better outcomes I would have.
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And he did my surgery before I turned one years old, which was not...
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The common time of intervention at that time and did a wonderful job with the baffle.
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And I think that's one of the reasons why I've had such a good evolution post that.
Complex Procedures and Recovery
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Throughout the years, my main complications have been related to arrhythmias and Tachybrady syndrome, which required a pacemaker in 1992 for the first time.
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And since then, I've had multiple pacemaker changes.
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I've had since 1999 two very large, my original leads that were not working well that everybody stated that they would have to take out at one point, but nobody wanted to touch because they were in the baffle.
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So this is how we get to this point.
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And late January, a couple weeks ago, I had a planned procedure that was meant to really take care of a lot of my hardware.
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and upgrade my hardware.
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So the the goal was to remove what's called a legacy or very large 9.5 French lead from my ventricle, remove an atrial lead that was not working, preserve the one atrial lead that I had for pacing that was working, and then the goal was to implant two new ventricular leads, one in the left ventricle,
00:10:45
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which would be for pacing and defibrillation.
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Now remember that my left ventricle is my pulmonary side ventricle and another one in my right ventricle to synchronize my contractility and make my QRS skinny so that I would have a better ejection fraction.
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Now, this is something obviously that was complex.
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Not a lot of people probably can do it, but I'm very fortunate.
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I'm in Houston where they have tremendous experience with adult congenital heart disease, and we'll talk about that a little bit later.
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But basically, I underwent my procedure.
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It required over 10 hours of general anesthesia.
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They were able to remove the matricular lead, remove the atrial lead without surgery,
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causing any damage to the baffle, which is my surgical repaired atrial switch.
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They were also able to preserve the atrial lead that I had and then were able to place a left ventricular lead for pacing and defibrillation, and they were able to place a right ventricular lead through the septum in order to synchronize my contractility and make my QRS skinny.
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So all in all, it was a brutal experience.
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At my age, I think being so long on an operating table, it was done.
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I mean, I was lucky that everything was being able to do percutaneously.
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However, they had a surgical team on backup in the ORs.
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And I think that they were obviously were very worried of any potential complications, especially with the lead removal that usually can cause some difficulties.
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These were leads that have been in my body for over 30 years.
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And they're old leads, they're big leads.
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So obviously that was the concern.
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Now, the procedure, I mean...
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took a toll on my body, lost several grams of hemoglobin, had to be shocked a couple of times.
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So you can imagine that waking up and recovering from that was not fun.
00:12:52
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But the good news is also that they were able to do a cardiac cath at that time and a left and right cardiac cath.
00:13:00
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And my hemodynamics really, I mean, normal numbers, my mean arterial pulmonary pressure is 14, my systolic
00:13:10
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Pulmonary artery pressure was 24 and the diastolic 10, which really for somebody with a systemic right ventricle and congenital heart disease for over 50 years is quite remarkable.
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So everybody was extremely, extremely pleased with that.
00:13:25
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It's very hard to sometimes get a good assessment of the right ventricular function and the systemic right ventricle.
00:13:35
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So obviously they don't do cardiac caths unless they really need to, but they were in there, so they did it.
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That was a big plus.
Specialization in Adult Congenital Heart Disease
00:13:43
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Now, talking more about my journey as a patient, as I mentioned, in most of my adult life I've been seen by pediatricians because the adult cardiologist, the adult echocardiographist, the adult internist, don't have a lot of familiarity with my physiology and my anatomy.
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However, being cared at pediatric hospitals as you grow, as you become an adult, also has some problems.
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There are certain things that become common in adults that the pediatricians overlook, like simple things like managing cholesterol, prostate health, etc., etc.
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So as the population of patients like myself has grown,
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They've developed a new subspecialty within cardiology of adult congenital heart disease.
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They now have a board certification.
00:14:31
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Most of the people who actually do adult congenital heart disease have done both medicine and pediatric residencies and medicine and pediatric cardiology fellowships, so highly, highly trained and specialized.
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In 2008, the AHA released guidelines for the management of adults with congenital heart disease.
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The recommendation is that geographically centers of excellence be formed for referrals.
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It's very important to have experience with this type of patients.
00:15:02
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One of the unique aspects about adult congenital heart disease is that patients like myself, for example, who had a mustard procedure, eventually will disappear because now they have better surgeries that are very different.
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So instead of switching the flow at the atrial level, they now will switch the great arteries.
00:15:19
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It's a different procedure.
00:15:21
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So all these procedures that evolve over time create subsets of patients that require a lot of expertise.
00:15:28
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Most of the cardiologists that I've interacted with in the adult world probably have never seen or rarely seen people in my physiology.
00:15:35
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To give you an example, at the place where I get my care, which is an adult congenital heart center,
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They follow 150 patients with my surgery, my anatomy.
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So the experience, I mean, is very, very, very different.
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So again, I mean, I think that the expertise in caring for these patients requires
00:15:56
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Cardiologists specialize in adult congenital heart disease.
00:16:00
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Congenital cardiac surgeons requires a specific cardiac anesthesiologist, people with specific echocardiography skills.
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I mean, doing an echocardiogram in somebody with systemic right ventricle, if you don't know what you're looking for, can be quite complicated.
00:16:15
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They require, obviously, support with diagnostic catheterization, non-coronary interventional catheterization available 24-7, electrophysiology, exercise testing, specific cardiac imaging, and really a multidisciplinary team that helps these patients in their journey.
00:16:34
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And I think it's an important thing to bring to our audience because you likely have seen or will see adults with congenital heart disease and congenital diseases of other nature
00:16:45
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The evolution of medical care is such that patients with all sorts of congenital problems that used to have very short lifespans are making it to adulthood, and they grow up with a subset of specific problems that might require very specialized care.
00:17:04
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So I just wanted to bring that to your attention.
00:17:07
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There are some types of adult congenital disease that are considered of great complexity,
00:17:14
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That includes valved or non-valved conduits, double outlet ventricles, plantain procedures, trastomy of the great arteries, which is what I had, pulmonary vascular obstructive disease, single ventricles, pulmonary atresia, tricuspid atresia.
00:17:31
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And I think it's important to recognize that these patients have specific physiology and specific needs.
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And when you see these patients, really think about what's the best place for them to be treated.
Defining Clinical Excellence
00:17:43
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So that is my just sharing with you a little bit about what I underwent and my journey as a patient, I mean, since I was born to an adult.
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And really, this was kind of an acute and chronic issue with the procedure that got me thinking about a lot of these issues that I'll talk about today.
00:18:04
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But I wanted to now switch gears and talk about clinical excellence.
00:18:09
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What does it mean to be world class?
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And like I said, I've been blessed throughout my life with amazing physicians, amazing teams that really are dedicated to the care of when I was a child of children with congenital heart disease.
00:18:27
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And as I became an adult, I mean, really the forefront of a new specialty.
00:18:32
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Like I said, I was born in 1970.
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The first time I saw an adult congenital specialist was in 2010.
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I was 40 years old, and it was really, I mean, remarkable.
00:18:44
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The difference and the attention to detail and the understanding not only of the physiological aspects of my disease, but talking about potential outcomes, talking about potential complications, how we optimize care, what are the things that we do control, but also understanding the psychological burden of being a patient for so long and not having a lot of good information of what's ahead because, you
00:19:09
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There's not like generations of patients that are older than me.
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I think officially at Texas Children's, which has one of the largest cohorts of patients with mustard procedures, I think I'm officially the third oldest alive.
00:19:23
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So as you can see, a lot of what's happening to me is kind of like, okay, this is kind of the forefront of care for patients with adult congenital heart disease.
00:19:34
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So when we talk about clinical excellence, I think about the individual clinician.
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What does it mean to be truly an outstanding clinician?
00:19:43
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I think about ICUs or programs.
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What does it mean to have a world-class program, in this case, maybe in caring for a specific population of patients, like it is adult congenital heart disease?
00:19:56
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And then obviously we have excellence at the institutional level, which is whole hospitals or systems that truly differentiate themselves from others in terms of their pursuit for excellence.
00:20:09
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So when I think of the individual clinical excellence, I think
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Like I said, I've been exposed to a lot of physicians, clinicians throughout the years, both as an intensivist, as a fellowship director, as a CMO of a large group, but also as a patient.
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And I've been thinking a lot about what makes an individual clinically excellent.
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And I came up with this formula that I think represents the best I can think, which is
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Clinical excellence is equal to C times H times O squared.
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So what does the C stand for?
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It stands for your clinical skills, and that includes your medical knowledge, your technical skills, and your clinical acumen.
00:21:01
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So obviously there are people who just know more about certain diseases that really, I mean, are up with the literature.
00:21:09
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In the case of my care, shout out to my physician, Dr. Wilson Lamb.
00:21:15
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He's an amazing, amazing physician who's dedicated his training to adult congenital patients.
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heart disease.
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He did a med-ped residency fellowships in adult and pediatric cardiology and then in electrophysiology and only sees people with adult congenital heart disease and very, very specialized.
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But he also has amazing technical skills.
00:21:38
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The fact that he was able to retrieve those 30-plus-year-old leads without causing damage, the fact that he was able to place those leads in my complex anatomy in such good positions, I think that speaks also to another aspect of clinical skills, which is your technical skills.
00:21:54
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And finally, there's the clinical acumen.
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How do you integrate your medical knowledge and your technical skills to make sure that you are making the best decisions for each individual patient?
00:22:06
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And that is something that I think not everybody has and something that can be developed, but clearly I think is an important element of clinical excellence.
00:22:16
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The second component of clinical excellence is H, which stands for humanistic skills.
00:22:21
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I do believe that no matter how good you are technically or how much you know, if you don't have the humanistic skills, including true empathy, the ability to provide compassionate care, and the ability to communicate clearly to your patients and to their families, you can't be an outstanding clinician.
00:22:44
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And I think that this is one of the areas that is super important.
00:22:48
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And I think it probably is going to be very difficult for AI to replace.
00:22:53
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And ultimately, I think it makes a huge difference when you have somebody who really cares about the individual, who really understands what they're going through, who tries to alleviate their suffering and communicate clearly what needs to be done, what are the options.
00:23:10
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It makes a huge difference.
00:23:12
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So I think that the humanistic skills, right, empathy, compassion, and communication are the other component.
00:23:21
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Finally, in the formula I mentioned, which is C times H times O squared.
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So what is the O for?
00:23:29
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Well, it's for ownership.
00:23:31
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And I do believe that ownership is something that, unfortunately,
00:23:39
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is being eroded in clinical practice today.
00:23:42
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And what do I mean by ownership?
00:23:44
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Ownership is to really take responsibility and accountability for the life of another human being.
00:23:51
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And it's not only just doing the best I can do, but making sure that if there's something that I can't do, that somebody else can do better,
00:23:58
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True ownership is to try to get that patient to that place.
00:24:01
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True ownership is to think about how can I get the best result to obsess about that.
00:24:08
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True ownership is to when there's a complication to show up.
00:24:13
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True ownership is to follow up on the things that you tell your patient.
00:24:17
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And I think that
00:24:20
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For many reasons, perhaps how we practice medicine today, ownership is something that's being eroded.
00:24:26
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And the reason why I said in the formula O squared is because in terms of patient outcomes,
00:24:33
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If you have somebody who really has ownership of your case, even if they don't have the best clinical skills or technical skills, they're going to get you a better outcome because they're going to make sure that you get the care that you need, whether that be transfer you to the right place and change the consultants and make sure that you get into the right program as an outpatient.
00:24:56
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And ultimately, I think that's the hardest thing to do as a clinician with so many patients and so many things that
00:25:02
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that we have on our plate.
00:25:04
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However, if we every day try to take a little bit more ownership of the cases that we're responsible for, I can guarantee you that we will become better and better in terms of our individual clinical excellence.
00:25:16
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And I have to say that I mentioned Dr. Lam
00:25:19
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He is truly somebody who embodies this clinical excellence.
00:25:24
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His clinical skills are off the charts.
00:25:27
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His knowledge of adult congenital disease are unbelievable.
00:25:30
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His technical skills are awesome.
00:25:34
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But he also has the empathy, compassion, and communicates very clearly with the patients and with their families.
00:25:41
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But ultimately, I think what I always felt with him, and he's been my physician for over a decade, is he takes full ownership of my care.
00:25:49
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He really takes that very seriously, and I think it's something that more of us should try to emulate because ultimately it's what defines, I think, clinical excellence.
00:26:02
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The other aspect that I wanted to talk about is how do we measure
00:26:08
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healthcare excellence among teams, right, among programs.
Measuring Healthcare Excellence
00:26:13
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And there's a great article that's almost 20 years old that I'll link in the show notes that I think everybody should read or if they read it before should reread by Atul Gawande called The Bell Curve.
00:26:24
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The bell curve basically tells us that not all health care is the same.
00:26:28
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And Atul Gawande explored outcomes in cystic fibrosis patients and demonstrated that care, whether it's an individual physician or a specific program, really occurs along a continuum.
00:26:43
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of a bell curve.
00:26:44
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There's a big group of people in the middle who meet common expectations.
00:26:49
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But on both sides of that middle, there are outliers.
00:26:52
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Outliers who provide care that's probably below average.
00:26:57
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where there's plenty of room for improvement.
00:26:59
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And on the other side, there's outliers who provide care that's better than average.
00:27:03
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And then there's an extreme outliers, that top 2%, who really provide care that is exceptional.
00:27:11
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And what's interesting is that in most diseases that you see as exceptional care, it's not because they have therapies that are unavailable to other people.
00:27:20
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It's not because they have access to drugs that nobody else has.
00:27:25
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The reason why they're outstanding is because their approach to treating these patients is one that really focuses on making every single aspect of their care better, above average.
00:27:39
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What's very interesting is that if you ask most hospitals or you ask most clinicians, they all think they're above average.
00:27:45
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But statistically, that cannot be true.
00:27:47
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So we do have care that can be measured across a continuum of this bell curve.
00:27:52
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And the question I was asking is, what makes people or programs get in that top 2%?
00:27:59
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Like I mentioned, I am very fortunate to get care at a very specialized place.
00:28:05
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I actually, post my procedure was in, I think it's the first dedicated unit for adults with congenital heart disease.
00:28:13
Speaker
Might be the only one in the country.
00:28:15
Speaker
So it's a 16-bed unit with universal beds that basically functions from anything from a floor to an ICU.
00:28:22
Speaker
And they only admit patients with adult congenital heart disease.
00:28:26
Speaker
So this unit, I mean, has a whole bunch of
00:28:32
Speaker
Professionals, including physicians, intensivists, cardiologists, CT surgeons, nurses, echocardiographists, who have tremendous experience with adults with congenital heart disease, and they really, really try to push the care for these patients at a narrow level.
00:28:49
Speaker
And I felt that as a patient just because the preparations for this procedure and everybody who was involved and everything that came after showed me that the layers of planning and the attention to detail that they have for these particular patients
00:29:06
Speaker
is really, really world-class and unique.
00:29:09
Speaker
I mean, there's many rankings, but Texas Children's Hospital has been ranked, I mean, often as the number one place for cardiology and heart surgery in pediatrics, but also I would suspect ranks very high in terms of adult congenital program.
00:29:25
Speaker
So what is it that makes them so good?
00:29:28
Speaker
And I think it's a dedication and a passion.
00:29:30
Speaker
Obviously, they have a very specialized type of care.
00:29:33
Speaker
But the one thing that came to mind was this idea of marginal gains.
Marginal Gains in Healthcare
00:29:39
Speaker
And the reason I want to talk about marginal gains is because we can apply it to our own life.
00:29:44
Speaker
We can apply it to our practice.
00:29:46
Speaker
We can apply it to our ICUs.
00:29:48
Speaker
So I'll share with you a case study of the United Kingdom, the British,
00:29:55
Speaker
cycling team and how they use marginal gains to become world class.
00:30:00
Speaker
So for over 80 years of Olympic competition, the British cycling team had won, in all its history, one gold medal.
00:30:11
Speaker
As they were preparing for their own Olympic in London in 2012, the Olympic Committee made a decision to hire Sir Dave Bralsford, who is a very renowned cycling coach and a big fan of marginal gains, to become the team director.
00:30:31
Speaker
So that was in 2003-2004.
00:30:33
Speaker
with the idea that they could prepare 10 years ahead of the Olympics and really build a world-class team that would obviously have a great showing in London.
00:30:44
Speaker
Now, what Broussard and those proponents of marginal gains will tell you is that if you improve every aspect of your performance by 1%,
00:30:58
Speaker
or every day, another way of saying it is if every day you improve 1%, the effect down the road is that similar of a compound interest and it's exponential.
00:31:08
Speaker
So he became fanatical of breaking up every aspect of cycling in the Olympics, from the nutrition that the athletes ate, the clothes that they use for different types of competitions, the position in the bike for each individual athlete under wind tunnel conditions.
00:31:29
Speaker
He looked at how they slept, so every athlete would have a personalized mattress and pillow, and they would travel during competition with those.
00:31:38
Speaker
how they recovered, how they trained, how they raced, every little aspect, even like how they set up their mechanical places in terms of making sure they minimize dust on the bikes, how they prep the bikes, really an extensive list of things that you couldn't even think about that they were fanatical about.
00:32:00
Speaker
They even trained every cyclist on proper hand-washing technique.
00:32:03
Speaker
Now, this is before COVID, obviously, with the idea that if they were fanatic about hand-washing, they would get less viral infections that are a big problem in some of the cycling events in terms of decreasing performance.
00:32:17
Speaker
And really, he took it to a next level where every aspect that they could think of that could impact performance was improved by a little bit, by 1%.
00:32:28
Speaker
So what were the results?
00:32:29
Speaker
Well, in the Beijing 2008 Olympics, the Olympic that preceded London, the British cycling team won 14 Olympic medals.
00:32:40
Speaker
They had eight gold medals, four silver and two bronze.
00:32:43
Speaker
That was the best by far performance of any cycling team in the history of the Olympics.
00:32:49
Speaker
In London, they reprised that performance with 12 medals, 8 gold, 2 silver, and 2 bronze.
00:32:56
Speaker
Again, I mean, hitting it out of the park.
00:32:59
Speaker
And since then, really have become kind of a world-dominant team.
00:33:03
Speaker
At the same time, they won their first Tour de France around those years, a British team.
00:33:08
Speaker
So it really demonstrated that by focusing on things that impact our performance and trying to improve everything by 1%, you can have a tremendous, tremendous impact.
00:33:20
Speaker
on performance and on outcomes, right?
00:33:23
Speaker
And that is exactly what I experienced as a patient of a very specialized adult congenital heart program.
00:33:29
Speaker
They really try to optimize every little thing from how they plan their surgeries, how they do the pre-op, how they follow up with you, the number of calls you get from the team, people involved in the care, the surgical backup, and
00:33:43
Speaker
They also, I mean, obviously went the extra mile to put that extra lead because they know that any advantage that you can get with contractility will help you long term.
00:33:54
Speaker
And this is very similar to what Atul Gawande described in terms of cystic fibrosis care.
00:33:59
Speaker
It's not taking good for an answer.
00:34:01
Speaker
It's really saying we need to make this as not good, but the best we can.
00:34:06
Speaker
And every marginal improvement on the care of these patients will ultimately result to far better outcomes.
00:34:14
Speaker
So I invite you to think about marginal gains.
00:34:18
Speaker
How can you apply that to your own ICU, to certain populations, and to understand that sometimes the difference between great care and average care is not access to maybe new techniques or technology or medications, but is how fanatical are you in executing the basic steps to another level?
00:34:42
Speaker
How good are you in executing the simple steps to become excellent?
00:34:47
Speaker
And I think that this is a very valuable concept.
00:34:50
Speaker
I've been thinking about it a lot.
00:34:51
Speaker
I definitely experienced it as a patient.
00:34:54
Speaker
And it's something that also I'm trying to push in my own practice.
00:34:59
Speaker
So these marginal gains ultimately have a huge impact, whether it be on winning races in the Olympics or on helping adult congenital patients have a normal life expectancy.
00:35:11
Speaker
So please reflect on how you can take this to your own ICU.
Lessons in Empathy and Patient Experience
00:35:16
Speaker
The last part of this podcast is just me sharing some bedside lessons that I've learned that I think are applicable to our listeners.
00:35:26
Speaker
And it was really interesting because on one hand, I think the procedure was very complex.
00:35:31
Speaker
It was very long.
00:35:32
Speaker
But I woke up and I had a couple days in the unit and I made a choice of only taking Tylenol.
00:35:40
Speaker
That might have been a foolish choice, but I really was interested in learning as much as I could and thinking about what I was seeing from the other side.
00:35:49
Speaker
I usually walk into an ICU as a physician and now I had the opportunity to think about some of these issues from the patient side.
00:35:58
Speaker
So the first thing
00:36:00
Speaker
thing that was really remarkable was the duality of my patient experience.
00:36:06
Speaker
On one hand, it was a big relief for me.
00:36:10
Speaker
This is a procedure that we had talked about for years that needed to be done for everything to have come out as well as it did and to know that things were much better than I expected.
00:36:22
Speaker
And that was, I think, a very, very positive for sure.
00:36:27
Speaker
I mean, a huge positive.
00:36:29
Speaker
On the other hand, those first 24 to 48 hours after the procedure, after the intervention, were perhaps the toughest days that I can remember from a physical perspective.
00:36:41
Speaker
And I've had a lot of procedures, a lot of interventions, but I've never felt so beat up as those two days.
00:36:47
Speaker
And I joked with my family that I felt that I got into a fight with Mike Tyson and Conor McGregor and I lost.
00:36:55
Speaker
But I think it's important
00:36:57
Speaker
to understand that there can be very good news, but you can feel pretty crappy as a patient still.
00:37:03
Speaker
And that is probably true for a lot of our surgical patients.
00:37:07
Speaker
And the lesson I learned here is that genuine empathy validates what the patient is going through.
00:37:15
Speaker
yes, everything went out well and we're excited for that.
00:37:18
Speaker
And yes, you must feel like shit because you went through a lot.
00:37:23
Speaker
And I think that validating that experience is very important.
00:37:28
Speaker
I kept hearing how well things had gone.
00:37:30
Speaker
And at one point it was very annoying because I was not feeling very good.
00:37:34
Speaker
And not that I wasn't happy, but I wanted to be taken care of and I wanted to feel better.
00:37:38
Speaker
So I think that
00:37:39
Speaker
validating the experience that patients and families have, I think is very important.
00:37:46
Speaker
This can be very stressful for them.
00:37:49
Speaker
Again, we're prisoners of our own perspective.
00:37:51
Speaker
It could be the worst day of their life, even though for us, I mean, it's just another case and it makes sense, right?
00:37:58
Speaker
But validating that experience, I think, is always very, very important.
00:38:04
Speaker
The other aspect that was quite interesting is in previous, I think, podcasts when we reviewed some of the literature, I reviewed a paper last year on cognitive motor dissociation in disorders of consciousness.
00:38:18
Speaker
This is a fascinating topic of people who we think are
00:38:23
Speaker
unresponsive, yet either understand or even though they have no motor manifestations, can interpret and react either by functional MRIs or functional EEGs, what we are telling them.
00:38:43
Speaker
And I had a very interesting experience.
00:38:46
Speaker
There was a moment, I mean, it was probably not too short based on what I was able to figure out looking back and talking with my family where I felt I was awake.
00:38:56
Speaker
I understood.
00:38:58
Speaker
that the surgery or the procedure was done.
00:39:01
Speaker
I could hear what people were telling me.
00:39:04
Speaker
I could interact with my own thoughts, yet I couldn't open my eyes, I couldn't move my body, couldn't feel my body, and couldn't talk.
00:39:14
Speaker
And it was very interesting because at the beginning,
00:39:18
Speaker
It was very peaceful and I was very relieved knowing that the ET tube was out, that the procedure went well, but I couldn't express or move anything.
00:39:28
Speaker
And I recognized that, but I could clearly understand what people were saying.
00:39:33
Speaker
And the other thing that is very interesting is that as the time went by, I started getting annoyed.
00:39:40
Speaker
because everybody would say to me everything went well everything went well and there was a lot of things that we had planned with my physician with my physician and i wanted to know what had happened to a matter of fact that i think one of the first thing that i first things that i said when i was able to talk was please give me some details right so again i wanted to understand what had actually happened
00:40:03
Speaker
The other thing that was very annoying is that they kept saying, he's waking up, he's waking up.
00:40:06
Speaker
And I was thinking, I've been awake for a while, right?
00:40:09
Speaker
What are you talking about?
00:40:10
Speaker
But I think the lesson here learned is that
00:40:15
Speaker
I will assume every patient can hear me and understand, and I will speak to them kindly, clearly, and try to give them specifics, especially after a surgery.
00:40:25
Speaker
I think we have no idea the level of consciousness that our patients have, and I think the study I mentioned, which I'll include in the show notes, and my experience tells us that sometimes we assume people are out, but they actually can understand,
00:40:42
Speaker
And it's something to keep in mind as we learn more and more that there is an important subset of patients where they're critically ill for several days or post general anesthesia who probably are more aware and awake and understand
The Importance of Communication
00:40:57
Speaker
that.
00:40:57
Speaker
than we believe they are.
00:40:59
Speaker
So that's an important lesson and humility.
00:41:01
Speaker
And just assuming, I mean, you walk into a patient's room and you assume they're out.
00:41:06
Speaker
So just put a stethoscope, start examining them.
00:41:09
Speaker
Maybe you should tell them who you are, what you're going to do, right?
00:41:13
Speaker
So I think assuming that every patient can hear and understand more than I believe is a good lesson to take home.
00:41:22
Speaker
The next area that I want to share a little bit is related to the drugs we use.
00:41:28
Speaker
And granted, I was under general anesthesia for probably, I think, a total of 11 or 12 hours total.
00:41:38
Speaker
I did not get drips for sedation once I left the recovery room and my stay in the unit.
00:41:47
Speaker
I did not take any narcotics because they just don't make me feel very well.
00:41:52
Speaker
But I can tell you that all these drugs that affect your mind and your nerves, they reset and screw up things for a while.
00:42:06
Speaker
In terms of dreams, in terms of thought processes, you feel the difference.
00:42:10
Speaker
It takes a while to get better.
00:42:13
Speaker
The other thing that was fascinating is I received a neuromuscular blocker at one point, and as the nerves wake up, you start feeling all sorts of crazy things, and it's amazing how all of a sudden how tight a pulse ox is on your index finger can become like a point of obsession in the middle of the night, how you feel that Foley catheter, and
00:42:40
Speaker
I had pressure bags with air on both groins because I had arterial and venous lines on both sides and they wanted to prevent hematomas.
00:42:50
Speaker
For the longest time, I thought that was just a warm blanket.
00:42:52
Speaker
But then, I mean, as I started waking up, I started becoming very uncomfortable, too painful, couldn't move.
00:42:59
Speaker
So really, I mean, my lesson here is that I think we should be intentional and very measured with the drugs that we provide patients that affect their nervous system and their mind.
00:43:11
Speaker
Less is probably better, but we should definitely, I mean, be very, very cognizant that if a couple of hours of these medications can alter you so much, I can't even imagine what days and weeks of these drugs do to people.
00:43:26
Speaker
So always trying to cut down on these medications as much as we can, I think is very, very important.
Patient Challenges with Medical Devices
00:43:34
Speaker
Next, I want to talk about devices.
00:43:37
Speaker
And I had obviously the pleasure of interacting with a Foley catheter and with an ET tube as a patient.
00:43:44
Speaker
The Foley catheter is another story.
00:43:47
Speaker
I think the procedure got delayed almost an hour because they had a traumatic Foley and eventually ended up getting urology to come and place a coude catheter.
00:43:57
Speaker
That's never fun.
00:43:59
Speaker
The ET tube, I don't remember it coming in.
00:44:02
Speaker
I don't remember it coming out.
00:44:04
Speaker
But I do remember having a lot of pain at night in my throat for several days.
00:44:11
Speaker
For almost two weeks, I had an area in my lip which felt dead, which is where I presume the ET tube was sitting.
00:44:19
Speaker
And again, I mean, when I think about this,
00:44:22
Speaker
we keep these devices in for days in our patients.
00:44:27
Speaker
And often patients have complained to me about they need to urinate and they say, well, you have a Foley catheter.
00:44:33
Speaker
I can tell you it's very disturbing.
00:44:35
Speaker
It's very uncomfortable.
00:44:37
Speaker
And what I learned here is that I will avoid and remove Foley catheters relentlessly.
00:44:44
Speaker
I think that for many reasons, we can avoid them, we can get them out.
00:44:50
Speaker
it's better for everybody not only avoiding infections but also for patient comfort and the other thing i thought about is the next time i intubate maybe i should try to be a little bit gentler um obviously when we intubate we usually do it under emergency conditions but that et tube leaves leaves uh reminders and it's not very comfortable and like i said i had it for half a day
00:45:15
Speaker
I can't even imagine what it would mean to have an ET2 for days and weeks at a time, which is also, I think, another reminder that if we're going to keep somebody on the ventilator, maybe a tracheostomy is a much better device to have than an ET2.
Role of ICU Nurses in Patient Care
00:45:33
Speaker
Finally, I want to share some reflections on ICU nurses.
00:45:40
Speaker
I've always said that ICU nurses are what makes an ICU special.
00:45:45
Speaker
It's really what makes the ICU different.
00:45:49
Speaker
As a patient, what I can also tell you is that you interact with your ICU nurse
00:45:56
Speaker
a hundred times more than you do with any clinician.
00:45:59
Speaker
The people who are caring for you are the nurses.
00:46:03
Speaker
And I think that we often as clinicians value our ICU nurses based on how we see their medical knowledge or how they react in emergencies, which don't get me wrong, are all very important.
00:46:19
Speaker
But I came to appreciate that
00:46:22
Speaker
There's a lot of nurses who might be very competent, but there's some nurses, and there's a couple in particular during my journey, my recent stay in the hospital, that are special because of how they care for you.
00:46:36
Speaker
When you're vulnerable, when you're beat up, even if the news is good, you need to be cared for.
00:46:43
Speaker
And the way some nurses care for their patients, the way they brush your teeth, the way they remove a Foley, the way they come and make sure that your socks are on when somebody takes them out, the way they look after you,
00:47:01
Speaker
is something that I think a lot of times as physicians and clinicians we don't appreciate, but I can tell you for patients that is probably what they remember.
00:47:12
Speaker
So I've always valued our ICU nurses, our colleagues.
00:47:17
Speaker
I think they, like I said, I think they're what make the unit run.
00:47:20
Speaker
But now I think I would value, my lesson is I will value ICU nurses for their ability to care for a patient as much as for their ability to execute in a crisis.
00:47:30
Speaker
I think that true excellence in nursing is not only knowing how to handle a crisis and be effective at the bedside when things are not going well, but also to care for the human being who is in a very vulnerable position at that point.
00:47:47
Speaker
So we talked about adult congenital heart disease.
Conclusion: Raising Awareness
00:47:51
Speaker
I hope that this podcast brings some awareness to our adult colleagues that you're going to see more and more adults with all sorts of congenital diseases.
00:48:01
Speaker
But specifically, obviously, we talked about heart disease, very unique population getting older, thanks to technology, but also with all these subgroups of patients who've had weird surgeries that are no longer done.
00:48:15
Speaker
that had their own set of complications in anatomy.
00:48:19
Speaker
We talked about clinical excellence.
00:48:21
Speaker
I do believe that as individuals, we should thrive to be better every day, and that perhaps the area of greatest opportunity for all physicians is to take more ownership of the care of their patients.
00:48:35
Speaker
We talked about what it means to be world-class.
00:48:38
Speaker
And I think that we can all move the needle towards world-class by really focusing on executing the basics at a very high level.
00:48:47
Speaker
So really focusing on those marginal gains and making sure that every aspect of care is optimized.
00:48:54
Speaker
And finally, I shared with you a handful of bedside lessons that I learned through, I guess, the humility of being a patient in a very, very vulnerable position over the last several days.
00:49:11
Speaker
And again, I believe that we all need to be reminded about these things on a regular basis because we get busy, there's a lot going on, and it's very easy to forget some of these lessons.
00:49:23
Speaker
So with that, in customary way with the podcast, I do want to share with you a couple of books that have been very instrumental during my recovery, things that I've been reading that I found to be very useful.
00:49:40
Speaker
So one thing I've been reading is I've been revisiting many of the essays by Michael de Montagne, who was a French noble scholar.
00:49:49
Speaker
who really started the whole idea of writing essays about different topics.
00:49:53
Speaker
I think very fascinating.
00:49:55
Speaker
I read several of those, but I also read a biography of Montaigne by Stefan Zweig.
00:50:02
Speaker
I think he was...
00:50:05
Speaker
the Austrian author that died many years ago, but very prolific.
00:50:08
Speaker
And he did a beautiful short biography on Montaigne that I read, I mean, after my procedure, that really speaks about the pursuit of living your life on your own terms, of living a life that's worth living.
00:50:23
Speaker
And I highly recommend, and I'll put some show notes.
00:50:26
Speaker
And then the other thing that was sent to me by a friend who's not in medicine that I read and blew my mind,
00:50:34
Speaker
is a novel called The Heart.
00:50:38
Speaker
And this is really, it transpires in a 24-hour period.
00:50:42
Speaker
And it's about a young kid who has a car accident after surfing, becomes brain dead.
00:50:50
Speaker
And then it's the 24 hours ensuing from that and ends up with a heart transplant.
00:50:56
Speaker
But I highly recommend this.
00:50:58
Speaker
It's a great, great prose, great story, great character development, and really was a thriller.
00:51:06
Speaker
I mean, I couldn't stop reading it.
00:51:08
Speaker
So I will put both of those in the show notes.
00:51:11
Speaker
And again, I mean, thanks for taking the time to listen to this episode.
00:51:15
Speaker
I know it's a little bit different of what we usually do.
00:51:18
Speaker
So I'll have my usual guests coming back in the next episodes.
00:51:23
Speaker
But recognizing what I just went through and that this is the congenital heart disease awareness week, I thought that there are some lessons worth sharing here.
00:51:34
Speaker
Thank you very much.
00:51:36
Speaker
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00:51:40
Speaker
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00:51:45
Speaker
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00:51:50
Speaker
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