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How My Heart Failure/Transplant Fellowship Changed Me

When I started my Advanced Heart Failure/Transplant fellowship, my program director told me this year would change my life. I thought, “Yeah okay, whatever.” Boy, did that year change my life. The way I looked at the world changed entirely. Transplant is one of the most incredible medical therapies available to patients with end-stage heart, kidney, and liver disease, amongst others. Because of the generosity of the donor and the donor’s family, someone else is given a second chance at life. I always tell my heart transplant patients that they should now be celebrating 2 birthdays every year- to commemorate the gift of life given to them a second time over.

When I say that year changed my life, it truly did, and that change is lasting. When we’re on heart donor call and we’re evaluating hearts for suitability for our recipients, they’re usually younger hearts and cause of death is almost always unexpected. The stories are tragic- suicides, car accidents, freak accidents, and unintended drug overdoses, amongst other causes of death. As I sit in my pajamas (donor heart evaluations happen in the middle of the night a lot) on my laptop making sure I look through all personal and medical details available to me, I can’t help but create an image in my mind of who this donor is, what they may have looked like, where they worked, how much pain they must have been in if their death was intentional, and most gut-wrenching is all the people they left behind. Death is never easy, but when the donors are young, when the deaths are intentional, when the deaths are completely unexpected, it makes me realize how grateful we should be for this life we are living.

That year completely changed how I look at the world. No longer was I going to “sweat the small stuff” whether they were work related or personal. Every donor call reminds me that we sometimes spend so much time, energy, and emotions on things that, in the grand scheme of life, are truly insignificant. I became a happier and more content person. This year taught me that human connections are the most important thing in this world. My family, the friends I consider family, my friends at work, my patients, and all the people I cross paths with that have an impact on my life.

And on the other side of death, after I have pictured this life lost and the family and friends they’ve left behind, I get to tell one of our patients with end-stage heart failure that a heart “has become available” to them and now their life is going to change. I can’t imagine how they feel but I’ve heard all kinds of the emotions on the other end of that phone- tears, shock, anxious smiles that can be heard through the phone, and more tears. My patients tell me it’s a very emotional experience from the time they’re listing. Some have said it feels weird to be “waiting for someone to die” so that they can live. Some have noted guilt. Some of my patients have developed relationships with their donor’s families and I can only imagine how surreal that must feel.

What I do know is that I couldn’t imagine myself doing anything else and that being a Transplant Cardiologist has truly changed my life. I am grateful to the patients who have allowed me to play a small role in their journey and forever grateful to the donors and their families for this incredible gift of life.

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Thiamine: An Important Nutrient to Consider in Treatment of Congestive Heart Failure

Thiamine deficiency is an uncommon nutritional deficiency in the developed world. The population most at risk in North America and Europe has been noted to be alcoholics with poor diets. This nutrient deficiency can manifest as several different syndromes, one of which is “beriberi.” Beriberi was first described by Dr. Wenckebach in the early 1900s who observed the presence of dependent edema, elevated venous pressures, and an enlarged heart in patients who had three or more months of a thiamine deficient diet, with recovery after thiamine administration. What followed years after were several case reports of alcoholics with signs of congestive heart failure who improved drastically with administration of thiamine.

Although today beriberi heart disease is a rare diagnosis, what it does show is that thiamine is an important micronutrient for the heart, and lack of thiamine can cause symptoms of heart failure.

Given that thiamine is excreted through the urine, another population that has been deemed to be at risk for thiamine deficiency is those on high doses of diuretics such as furosemide1. Interestingly, this population includes the difficult-to-control heart failure patients that we see on the wards every day. Biochemically, one study has shown that thiamine uptake in cardiac cells can be inhibited by furosemide2.

Yet, treatment of patients with congestive heart failure on diuretics with thiamine is not currently standard of practice.

Looking at the literature, there have been only two randomized double blind placebo controlled trials on thiamine use in patients with congestive heart failure: Shimon et al 19953 and Schoenenberger et al 20124. Both of these trials showed a statistically significant increase in left ventricular ejection fraction with the use of thiamine in patients presenting with symptomatic congestive heart failure. Granted, the ejection fraction only improved by 3-4% which we could say was due to echocardiography interpretation variability. However, being that thiamine is cheap and there is evidence that points towards its use as a medication in heart failure, should we institute it into our daily practice?

What do you think?

 

References:

  1. Katta N, Balla S, Alpert MA. Does Long-Term Furosemide Therapy Cause Thiamine Deficiency in Patients with Heart Failure? A Focused Review. Am J Med. 2016;129(7):753.e7-753.e11.
  2. Zangen A, Botzer D, Zangen R, Shainberg A. Furosemide and digoxin inhibit thiamine uptake in cardiac cells. Eur J Pharmacol. 1998;361(1):151-5.
  3. Shimon I, Almog S, Vered Z, et al. Improved left ventricular function after thiamine supplementation in patients with congestive heart failure receiving long-term furosemide therapy. Am J Med. 1995;98(5):485-90.
  4. Schoenenberger AW, Schoenenberger-berzins R, Der maur CA, Suter PM, Vergopoulos A, Erne P. Thiamine supplementation in symptomatic chronic heart failure: a randomized, double-blind, placebo-controlled, cross-over pilot study. Clin Res Cardiol. 2012;101(3):159-64.

 

 

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It’s All In The Family

Our understanding of the genetic basis of adult-onset cardiomyopathy is rapidly evolving. Most of us learned to practice medicine in a paradigm that relied on detailed disease phenotyping, but now we have the ability to incorporate genetic and genomic information into routine clinical care. Even if you cannot remember the last time you thought about genes or pedigrees, here are a few modifications you can make to your practice today that will help you keep up with this exploding field of cardiovascular medicine.

 

1) Take a minimum three-generation family history in all patients with a primary cardiomyopathy.

  • The goals of taking a family history are to learn (1) whether the cardiomyopathy is familial, (2) about disease characteristics among family members, (3) if it is inherited in a specific pattern, and (4) to identify at-risk relatives.
  • Most adult-onset cardiomyopathies are inherited in an autosomal dominant pattern, but other inheritance patterns (e.g. dignetic, multigenic) are possible and need further study.
  • Importantly, an individual can have a genetic form of cardiovascular disease without having affected relatives. Most often, this is due to recessive inheritance, de novo mutations/variants, or reduced penetrance.

 

2) Use focused questions to obtain the family history.

  • The use of vague terms like “heart attack” can lead clinicians away from pursuing an inherited etiology of disease and prevent them detecting other important cardiovascular diagnoses like sudden cardiac death in family members.
  • Ask specific questions regarding heart failure symptoms (e.g. presence or absence of dyspnea at rest or on exertion, paroxysmal nocturnal dyspnea), arrhythmia symptoms (e.g. palpitations, presyncope, syncope with or without exertion), and sudden death (e.g. drowning, single-vehicle accidents) in family members.
  • Knowing about relatives’ cardiovascular procedures like arrhythmia ablation, cardiac surgery, device implantations, or heart transplantation can also be helpful.
  • If a multisystem syndrome like a laminopathy or Fabry disease is suspected, familiarize yourself with the extracardiac manifestations and include pertinent questions in your history.

 

3) Remember that diagnosing an individual with an inherited cardiovascular disease is just the first step in the process.

  • In cardiovascular genetics, a key concept is the transition of practice from individual patient-based care to family-based care. By incorporating the information you generate from your comprehensive multi-generational family history, you also gain insight into disease penetrance, expression, age of onset, and pleiotropy.
  • Generally, cardiomyopathies are considered “medically actionable” because evidence-based treatments to reduce morbidity and mortality exist.
  • Beyond just having effects on medical and device therapies, following this paradigm of family-based care also has implications for reproductive and family planning and lifestyle practices.

 

If you are interested in learning more about this topic, check out the 2018 update to the Heart Failure Society of America Practice Guideline on the Genetic Evaluation of Cardiomyopathy (PMID: 29567486).

 

 

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Highlights of the 1st Annual Sex and Gender Conference at AHA18

Walking into the Palmer House Hotel, the longest continuously operating hotel in the United States, you can’t help but pause in awe at the intricate décor and take in the most photographed ceiling in the world. I make my way to the Honoré Ballroom, named after Bertha Honoré Palmer, the wife of Palmer and an astute businesswoman and well-known Chicago socialite of her time, not knowing what to expect for the 1st annual Sex and Gender Influence on Cardiovascular Disease (CVD) conference.

Annabelle Volgman, medical director of the Rush Heart Center for Women, kicks off the evening by thanking the speakers and planning members, and encouraging photography and social media sharing. The many photos of the evening include Bertha Honoré’s portrait adjacent to the colorful and modern logo that, I think, will become a recognized image at future AHA Scientific Session meetings.

Dr. Annabelle Volgman welcomes attendees to the 1st Annual Sex and Gender Influences on Cardiovascular Disease at the Palmer Hotel in Chicago, IL (November 11, 2018).

 

Dr. Nanette Wenger of the Emory Women’s Heart Center starts the conversation with her presentation titled “Why is Mortality from Cardiovascular Disease Rising in Men and Women?” She flashes a graph of CVD mortality on the screen, highlighting the steep decline in the past decades, but the leveling off and reversal in recent years, particularly in women under the age of 55 years. The parallel rise in obesity and diabetes, as well as “non-traditional” CVD risk factors such as depression and perceived stress disproportionally affect women, she explains, and may be responsible for this reversal in CVD death rates. Summarizing the recent paper, “Defining the New Normal in Cardiovascular Risk Factors” by Dr. Donald Lloyd-Jones and Dr. Philip Greenland she points to a combination of health behaviors and ideal levels of total cholesterol, blood pressure, and fasting blood glucose, as key factors in achieving cardiovascular health.

“Behavior change,” she says, “is the ‘Holy Grail’ of heart health” and as “health professionals take back the role [of health educator] and address lifestyle behaviors” we will see favorable trends in biomarker targets we’re so interested in.

Later during the Q+A panel, when asked about the best way to approach behavior change with patients, she advises to first, “Give information – if your patient does not have the information, they can’t make a change. Then, let them start with what they would like to start with. Don’t give them 8-10 [health behaviors] to change – they will tune you out.” Dr. Gina Lundberg, co-director of the Emory Women’s Heart Center, chimes in that the clinician’s “approach to weight loss is similar to smoking cessation. Identify the obstacles in the patient’s way – money, time, desire – and often just identifying those hurdles will lead to improvement.”

Dr. Laxmi Mehta, director of the Women’s Cardiovascular Health Program at the Ohio State University Wexner Medical Center, adds that she includes an emotional appeal – “Where is the patient going and what do they want?” Seeing a child’s wedding or playing with their grandkids, developing rapport with patients and fitting your recommendations to their goals can start the health behavior change process, even in a 5 minute clinician-patient discussion.

 

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How the Immune System Favors Females in Pulmonary Artery Hypertension? Another Regulatory T Cell Story.

While it is commonly thought that cardiovascular disease is a man’s disease, CVD is the number one killer of women with the same number of deaths per year as cancer, diabetes and respiratory disease combined (according to 2015 statistical data from AHA). In addition, women exhibit different and more silent symptoms of heart attacks. There is a lot of interest in the difference between how males and females respond to CVD. A lot of emphasis is put on hormonal differences, but the immune system also seems to play an important role in this disparity. Females have a more robust immune system and therefore respond faster to infections providing more protection than in males. However, a more responsive immune system also means a more reactive immune system that can result in increased incidence of autoimmune diseases, such as rheumatoid arthritis and lupus.

Part of the difference in the immune system response in females can be attributed to the fact that multiple immune-related genes are expressed on the X chromosome. Since females have two alleles of the X chromosomes and males have only one, it is evident that females express more genes that regulate immune system functions. One of these genes is Foxp3, the key transcription factor for regulatory T cells, an adaptive immune cell which I have discussed before in a previous post. Regulatory T cells play an important protective role in CVD, especially in atherosclerosis and hypertension.

Pulmonary artery hypertension (PAH) is a fatal cardio-pulmonary disorder where the pulmonary arterioles narrow leading to a right ventricular fibrosis, heart failure and death. Regulatory T cells play an important role in this disease as animal models that lack regulatory T cells are more susceptible to PAH. Adding regulatory T cells back prevents the development of PAH showing the protective power of these cells. A recent study published in the journal Circulation Research, shows that in the absence of regulatory T cells, females rats are more prone to PAH than male animals due to a lower levels of PGI2, a pulmonary vasodilator, and the lack of the enzyme COX-2 that regulated PGI2. The researchers conducting the study show that by transferring regulatory T cells into these rats, these immune cells were sufficient to restore the levels of COX-2 and PGI2, as well as other immune inhibitory molecules PDL1 and IL-10. The authors suggest that regulatory T cells have both a direct and indirect effects on the arteries. The direct effects are exerted on the endothelial cells directly via COX-2 and PGI2, and the indirect effect is through the release of inhibitory molecules such as IL-10 and TGF, both of which would result in immune suppression and preventing inflammation. The results from this report suggested that females are more reliant on regulatory T cells for protection against PAH.

These new findings highlight the subtlety of immune regulation between females and males and further proves that in addition to hormonal differences, immune regulation disparities between genders that can alter the outcome of cardiovascular diseases. By understanding more about gender differences in CVD and the immune system, and figuring out ways to manipulate these subtle differences, scientists hope to achieve a more personalized and effective therapies to women versus men to combat CVD.

 

Dalia Gaddis Headshot

Dalia Gaddis is a postdoctoral fellow at the La Jolla Institute for Allergy and Immunology. She has a Ph.D. in microbiology and immunology. She is currently working on understanding the interactions between the immune system and atherosclerosis development

 

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Nursing research at Heart Failure congress 2018 in Vienna, Austria

The 26th-29th of May I went to the Heart Failure Congress 2018, Including the World Congress on Acute Heart Failure in Vienna, Austria. The congress had over 5,750 participants from over 80 countries. To see all the tweets during this congress, search for the #HeartFailure2018.

This year there were a lot of interesting talks and I would like to highlight a few in this blog.

Dr. Tiny Jaarsma gave a talk about sex and heart disease. Pointing out that heart disease can lead to sexual problems. Furthermore, patients think that sexual counseling should be part of cardiac rehabilitation, which is often not a subject that is discussed. Patients prefer to receive written material and/or individual discussions.

Dr. Cecilia Line from @karolinskaint pointed out that one third of patients with an ICD are not aware that they can deactivate their ICD. Furthermore, patients with ICDs would like to be informed especially when the life expectancy is short. And we should remember, according to Dr. Anna Strömberg, that patients with an LVAD are going through a transition in life and that there are psychosocial challenges in patients with an LVAD. See her take-home messages in the pictures below.

managing patients psychosocial distress slide

Some talks highlighted the importance of frailty in cardiac patients. Dr. Inger Ekman from @SahlgrenskaAcad discussed the importance of screening for frailty in cardiac patients and suggested existing instruments to do so (see picture below). Dr. Kentaro Kamiya’s research showed that frailty is associated with clinical outcomes in elderly patients hospitalized for heart failure, which indicates that frailty is useful for prognosis in in hospital settings.

frailty instruments slide

In the late breaking trials, the results of the HF-Wii study were discussed. This study proves that exergaming (being physical active through video gaming) has positive influence with the exercise capacity and wellbeing of patients with heart failure. See an interview about this study during the interview. In a poster presenting a sub-study of the HF-Wii showed that exergaming could also be feasible for patients with an LVAD, and patients especially liked to exergame with their grandchildren.

conclusion slide

There was also a great session on alternative ways to be physically active in patients with heart failure. One of the alternative ways was presented by Dr. Anna Strömberg: medi-yoga. Read more about medi-yoga. A second alternative way to exercise was presented by Dr. Taylor-Piliae: Tai-Chi. And a third way presented by Dr. Tiny Jaarsma was exergaming. In this session Dr. Von Haehling pointed out that testosterone therapy could increase exercise capacity. Dr. Massimo Piepoli concluded that half of the patients with heart failure are denied a highly recommended therapy and that scientific societies should strongly promote a well-recognized therapeutic tool to improve exercise capacity, quality of life and outcomes in patients with heart failure.

exergaming has physical and quality of life benefits for heart patients flier

And last but not least, I would like to congratulate Lilas Ali, who won the nursing investigator award session with her research that showed that person-centered telephone-support is effective in patients with chronic obstructive pulmonary disease and/or chronic heart failure (see picture below).

photo of women receiving award

Please save the date for next years’ Heart Failure congress 2019, 25-28th of May 2019 in Athens, Greece.

save the date for heart failure and world congress on active heart failure

Leonie Klompstra Headshot

Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

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When and how do we discuss prognosis and end-of-life with patients with heart failure?

A topic that is lately much discussed on cardiac congresses is the discussion of prognosis and end-of-life with patients with heart failure. Who is responsible to discuss these difficult topics? When should these topics be discussed and how do patients like to discuss this in their heart failure care?

In a recent doctoral thesis, Lisa Hjelmfors explored the prevalence and practice of nurses discussing prognosis and end-of-life care with patients with heart failure and the nurses’ perspectives regarding discussing prognosis and end-of-life care.
One of the articles presented in her thesis was accepted for a poster presentation at #AHA17 (see picture).

 Prof. Lorraine Evangelista, Prof. Tiny Jaarsma, Prof. Anna Strömberg
Prof. Lorraine Evangelista, Prof. Tiny Jaarsma, Prof. Anna Strömberg

Her research showed that most nurses discussed prognosis and end-of-life care with a patient with heart failure at some point in their clinical practice. Although they found that they have a role in these discussions, they found that the main responsibility for this discussion is with the physician. Together with sexuality, discussing prognosis and end-of-life are the least frequently discussed topics in heart failure clinics. I addressed in an earlier blog on sexual counselling in cardiac rehabilitation.

Lisa Hjelmfors points out that end-of life care should be included as a part of the daily routine at heart failure clinics and nurses should be encouraged to take more responsibility for discussing prognosis and end-of-life with patients and their care-givers.

Communication with patients with heart failure should always be tailored, this is strengthened by the findings in her research that patients have different preferences in discussing prognosis and end-of-life.

But a lot of research is yet to come. We have to find good ways to make it easier to discuss end-of-life and prognoses for both nurses and patients. End-of-life simulations could provide successful and appreciated learning situations for nursing students, teaching them communication skills in challenging situation.  A prompt list could help patients to initiate discussion. Research is also needed on how to include care-givers in discussing end-of-life and prognosis and look at their perspectives on these discussions.

Click here to read Lisa her whole doctoral thesis.

Sketch of Communication about the heart failure trajectory in patients, their families and health care providers

 

Leonie Klompstra Headshot

Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

 

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Appetite: An Important Symptom To Assess In Patients With Heart Failure

Today I attended an impressive defense of Christina Andrea (@C_Andreae) of her PhD dissertation on appetite in patients with heart failure. She highlighted the importance of a symptom in patients with heart failure, that is rarely assessed: Appetite.

Appetite in patients with heart failure cover

Appetite, or the desire to eat, is a common problem in patients with heart failure. Appetite is important in patient with heart failure for maintaining food intake and a healthy weight. There is a lack of knowledge on the significance of problems with decreased appetite and on which factors that might contribute to decreased appetite and whether decreased appetite has an influence on patients’ health status.

In her studies she found that 38% of patients with heart failure (despite that the majority had mild to moderate heart failure symptoms i.e., NYHA class II) experienced an appetite level that put them at risk of weight loss.

In one of her studies, which she presented last year on the #AHA17 congress, she found that patients with heart failure who were more physically active have better appetites compared to patients who are less physically active.

physical activity and appetite in patients poster

Other factors that she found which are associated with loss of appetite were older age, symptoms of depression, sleep problems, impaired cognitive function and suboptimal medical treatment and should be recognized in all these patients. Loss of appetite needs attention as it is likely to lead to worsened nutrition, but also because she found that loss of appetite is associated with lower health status.

So what should we do with this new information?

Christina suggest that the assessment of appetite should be incorporated as routine in nutritional care. For instance, an instrument that could be used is CNAQ: Council on Nutrition Appetite Questionnaire. The results could be used as a basis for communicating appetite with patients and their family members. Furthermore, she found a lot of factors associated with appetite, health care professionals should pay attention to patients who are older, as well as patients with depressive symptoms, sleeping problems, cognitive decline, low physical activity and patients with suboptimal treatment.

Leonie Klompstra Headshot

Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

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Sexual Counselling In Rehabilitation For Cardiac Patients

In most rehabilitation programs, sexual counseling is not given to cardiac patients. This while the cardiac disease could influence the sex life of patients. There are physiological and pharmacological causes that can influence sex life of patients. Also, the disease can increase fear, anxiety & depression and relationships could change. If the disease negatively influences a patients’ sex life, this could impact their quality of life and well-being. Patients could choose to skip medication in the case sexual problems occur, order online PDE5 inhibitors, or experience side effects of other treatments than their cardiac treatment (e.g. herbal treatment). A changing sex life will not only impact a patient’s life, but also their partner’s, who report sexual concerns as a significant stressor. We have to realize that sexual satisfaction and communication satisfaction is associate with marital satisfaction. The sex life of patients with heart failure deteriorate in 25% of the patients, where half of these patients consider this as a serious problem.

Two-third of patients report that sex was never discussed in their cardiac care, where about half of the patients would like to have to opportunity, or more opportunity to discuss sex with a health professional.

The question now is not if, but how we should provide sexual counselling in cardiac care. It is important to find the underlying reasons why the disease influence the sex life of the patients, assess the patient’s expectation and unravel misconceptions.

Patients at two months post myocardial infarction preferred written material (69%), individual discussion (57%), video tape for home viewing (55%), consultation telephone line (23%) or group discussions for sexual counselling (19%). There are a lot of brochures with information of sex and cardiac disease. For patients with heart failure, there is a nice web-site where they could find information on sex and heart failure:

Sex and heart failure - excerpt ffrom heartfailurematters.org
Excerpt from heartfailurematters.org

There are also questionnaires that could be used in practice, such as the multidimensional sexual-concept inventory or the sexual adjustment subscale. But you could also just ask. An example how you could ask is:
      – Some people with cardiac disease have problems with resuming sex after diagnose. How is this for you?
      – Some people report sexual problems as a result of prescribing medication. If you feel this is the case for you, please feel free to talk to me about this.

To read and hear more about this subject, please watch the web seminar on sexual counselling of cardiac patients: theory and practice by Dr. Molly Byrne and professor Tiny Jaarsma.

 

Leonie Klompstra Headshot
Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.

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Letting Go

Recently, I was reminded of one of my unique roles as an advanced heart failure cardiologist. 

As a physician in such a highly specialized field, I often have the opportunity to offer patients life-saving measures that can only be performed at highly trained qualified quaternary medical centers. This may span the gamut from a wireless hemodynamic monitor placed in the pulmonary artery to a temporary or durable ventricular assist device to an organ transplant.

I often think of the times that I have been able to be the first person to share with my patient and their family that we have finally found a suitable donor organ for them. The initial joy and sheer euphoria followed by the nervous anticipation for the next step of the journey that began often several years prior. I remember the tight hug of the patient’s wife, the embrace from a usually stoic patient, the high five from the patient who loves sports analyses. Burned into my memory, each of these patient’s experiences have been a beautiful addition to my own formation as a physician, clinician, and truly, as a human being. 

Frequently, however, are times where I have to traverse a path of palliation with patient and families. In this role, I help to guide families through quite literally the worst times of their lives.

While we have the invaluable assistance of specially trained palliative care and hospice providers, I have also found in my experience that patients’ families truly value the input and guidance from our heart failure team whom they have often had continuity with spanning both inpatient and outpatient care. I have witnessed tears and raw emotion from the healthcare teams who have invested so much of themselves in the care of the patient and are connected like family.  

The depths of these emotions however, the unparalleled highs tempered by the valleys of sadness, have molded me; sometimes shaken me to my core. Along my own journey forward I carry with me the stories and teachings of those who we have helped survive and those who   we have helped to die with dignity. It is in these times, where the lines between medicine and humanity are blurred, that I am reminded of my sacred privilege of being a physician.

Megan Kamath Headshot

Megan Kamath is a Fellow in Advanced Heart Failure and Transplant Cardiology at the University of California, Los Angeles. Her research interests include outcomes in advanced heart failure, decision making and relational medicine, and utilizing technology in healthcare. She is now tweeting @MeganKamath, so follow her on there!