"What's Her Problem?" Podcast

About "What's Her Problem?" Podcast

“What’s Her Problem?” Podcast is the audio version of writer and patient advocate Debra Rafson's weekly Substack newsletter tackling Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more! whatsherproblem.substack.com (https://whatsherproblem.substack.com?utm_medium=podcast)

Publisher

Debra Rafson

Category

health & fitness · society & culture

Language

en

Explicit

No

First episode

22 Jul 2025

Latest episode

23 Oct 2026

Latest episodes

59 episodes in the feed.

1. 

   23 Oct 2026

   Reflections on the 2026 HCMA Patient Meeting

   Last October, I wrote about my first time attending the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting. If you’d like to compare and contrast my experiences between last year and this year, here were my reflections from 2025 (https://whatsherproblem.substack.com/p/reflections-on-the-2025-hcma-annual). Note: This year’s reflection is a comprehensive one. If the end is cut off by your email provider due to the length, just click “View Entire Message” to see the rest, or read it in full on your web browser or Substack App. You won’t find the word “pivotability” in Merriam-Webster’s dictionary. But it’s a concept that’s easy to grasp, especially for patients managing chronic illness. Pivotability is “how open, flexible and agile you are to change.” It encompasses the ability to pivot, to chart a new course, and, perhaps most importantly, to be resilient. This word loomed large at the Hypertrophic Cardiomyopathy Association’s (HCMA) Annual Patient Meeting at the Hyatt Regency in Morristown, New Jersey on Saturday, October 10, 2026. Not just because those of us who attended were gifted with t-shirts announcing that “Pivotability is My Superpower” or because the event organizers had to modify their plans when the remnants of Hurricane Isaias conspired to postpone their planned 5K run/walk the following morning. Rather, it was because this skill of pivotability wove its way into every topic and presentation in some way, shape, or form. In this article, I will review some of the Patient Meeting’s highlights, especially as they relate to this idea of pivotability. An Overview of HCM and the HCMA 2026 marks the 30th anniversary of the Hypertrophic Cardiomyopathy Association (HCMA), whose mission is “Providing support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy and all thick heart muscle disorders, while supporting research and development of treatments and diagnostics.” Founder and CEO Lisa Salberg opened the day with a grand entrance to the sounds of Taylor Swift, and she wove her way through the conference room, hugging about a dozen people along her path up to the podium. In the room were nearly 200 attendees: HCM patients, their families/friends/caregivers, doctors from the Centers of Excellence in Hypertrophic Cardiomyopathy (https://4hcm.org/centers/), representatives of the pharmaceutical companies who develop drugs for HCM patients, the HCMA staff and board, and other interested parties. Lisa reviewed the history of the HCMA, from the early days of fax machines and message boards, through the creation of the Centers of Excellence, drug companies and cardiologists turning their attention to HCM, and going global with patient outreach. On display at the front of the room throughout the day, next to a photo of the two men together in 2009, was the original 1959 typewritten letter from Dr. Eugene Braunwald to Claude Brady, diagnosing him as the first patient with Hypertrophic Cardiomyopathy. Mr. Brady’s local doctor first heard his heart murmur in 1948, but Dr. Braunwald was the first to describe it in the modern terms we now use for HCM. As she turned her attention from the past to the future, Lisa announced two upcoming initiatives, including a partnership with the American Heart Association (4 select hospital locations will distribute flyers to HCM patients offering free support) and the “Know Your 9” Campaign, in which patients will get their 9 most important HCM data points listed on a wallet card so they can easily share it with their doctors. Dr. Martin Maron, who happens to be my HCM Cardiologist, took to the podium next for an overview of HCM. A way to level-set for anyone in the room who was new to the disease or the field of study. In short, Hypertrophic Cardiomyopathy is the most common genetic heart disease in the world, affecting between 1 in 200 and 1 in 500 people worldwide. 70% of HCM patients have an obstruction to blood flow through their left ventricle, where the wall thickness is greater than 15mm. The rest are unobstructed. “In 2026, HCM is a highly treatable heart disease,” said Dr. Maron. “The primary goal in HCM treatment is to improve quality of life by restoring it to normal or near normal.” Treatment plans between 1999 and 2019 led to a 53% reduction in mortality rates for patients with HCM. Pharmaceutical Pivotability Since 1957, Beta-Blockers, a class of drugs more commonly used in other cardiac conditions like high blood pressure and angina, have been the first-line medication treatment for HCM patients due to their ability to “slow the heart beat and reduce its force of contraction.” In the absence of other options, they were a good starting point, but it was time for pharma to pivot. In 2012, a company called MyoKardia recognized the need for targeted therapies in Hypertrophic Cardiomyopathy and reached out to Lisa and the HCMA to learn more about what would help patients the most. While MyoKardia was later acquired by Bristol Myers Squibb, the drug they were developing became Camzyos (or Mavacamten), the first-in-class Cardiac Myosin Inhibitor (CMI). A drug that has been revolutionary in HCM care, for patients with an obstruction, since its approval by the U.S. Food and Drug Administration (FDA) in 2022. In late 2025, a second Cardiac Myosin Inhibitor, Myqorzo (or Aficamten), from Cytokinetics, was also approved for HCM patients with an obstruction. “Cardiac Myosin Inhibitors (CMIs) treat HCM at its source rather than managing symptoms.” But in an awesome display of pivotability, the doctors and pharmaceutical companies working in HCM weren’t satisfied with these two new medications, despite their remarkable impact on patients. Rather, a whole industry has shifted towards developing additional targeted therapies for both non-obstructed patients (a population with huge unmet need) and obstructed patients. Here’s what else we learned about in the clinical trial pipeline for HCM: * Both Camzyos and Myqorzo are being studied to see if they can have a positive impact in HCM patients without an obstruction. So far, Myqorzo’s ACACIA-HCM trial yielded positive results. According to Dr. Maron, it’s the “first time in 60 years we’ve been able to demonstrate that a medical therapy has been clearly associated with a real clinical benefit for patients with non-obstructive HCM. A big deal in a lot of ways, for that reason.” * Haya Therapeutics is investigating an Antifibrotic Therapy. Fibrosis is a stiff scar inside the heart muscle and a key feature of HCM. It impacts how well or poorly the heart can relax and squeeze. Scarring may generate abnormal rhythms and can be assessed with Cardiac MRI with contrast. This drug is an Antisense Oligonucleotide (ASO), which is an RNA therapy (not a gene therapy). WISPER/HTX 011 is about to begin a Phase 2 clinical trial. * Imbria Pharmaceuticals is currently enrolling patients in the US and Europe for their Phase 3 clinical trial, FORTITUDE-HCM. Their drug, Ninerafaxstat, is designed to shift energy use in the HCM heart from fatty acids to glucose and acting in the mitochondria, where heart cells produce energy. The heart needs a lot of energy in the muscle to relax and contract well. This drug is directed at patients with non-obstructed HCM. * Braveheart is bringing us HRS-1893, which would be a new Cardiac Myosin Inhibitor. According to Dr. Milind Desai, Director of the Center for HCM at the Cleveland Clinic, one of the most engaging presenters of the day, early data shows this drug “Maintained a favorable safety profile with minimal changes in left ventricular ejection fraction.” In other words, it was effective in reducing symptoms without causing new signs of heart failure. * Edgewise Therapeutics’ drug, EDG-7500, a cardiac sarcomere modulator, differs functionally from the others listed here because instead of an on/off approach to the full cardiac cycle, it targets a specific moment at the beginning of the cardiac cycle. Early clinical data shows that it allows obstruction to be removed without reducing Ejection Fraction. Or, as Dr. Michael Ayers, Director of the Center of Excellence in HCM at UVA Health described it, “you can have your cake and eat it too.” * Tenaya Therapeutics is working on the first gene therapy for Hypertrophic Cardiomyopathy patients. TN-201 targets the MYBPC3 gene, which is one of the most common genetic markers of HCM (and the one I have). Dr. Radhika Agarwal, Physician & Researcher from Mass General Brigham, did a deep dive into how gene therapies work. To summarize, you need the right Vector (virus) carrying the right Payload (gene/protein/code) into the right Patient at the right time. And delivering that gene is not the same as treating a disease. It must be accompanied by the right manufacturing, the right pricing, and equitable access to the treatment. Early clinical data shows that patients who received TN-201 began to show improvements in their biomarkers 6 months after dosing. And after all that pivoting to new options, where does that leave Beta-Blockers? In the last 60 years, there has only been one clinical trial to determine how effective Beta-Blockers truly are for HCM patients. That MAPLE-HCM study showed both that the effects of one Beta-Blocker, Metoprolol, actually made symptoms worse with exercise as compared to patients who were not taking any medications and that patients who take Cardiac Myosin Inhibitors can stop taking Beta-Blockers. Dr. Maron assessed there is now “diminished enthusiasm for Beta-Blockers because of the effects on exercise, as well as other side effects” and that “Now we have other options.” Talk about the evolution of an entire field! Surgical Pivotability I recently wrote about the 10-year anniversary of my own open-heart surgery, a septal myectomy to remove the obstruction to blood flow in my left ventricle (https://whatsherproblem.substack.com/p/celebrating-10-years-since-open-heart). In that article, I described the surgery and why it was such an important advancement in HCM care, and I promised to provide an update on newer methods. As with pharmaceuticals, new tools for the toolbox are on the horizon, and those surgeons are in the process of pivoting to broaden the number of surgical methods they choose from. But the updates I had been looking forward to hearing all day differed slightly from my expectations. What I expected was an emphasis on the new procedures, including one that has been developed in China called a Trans-Apical Beating Heart Septal Myectomy (TA-BSM). Instead, Dr. Gabor Bagameri, Cardiovascular and Cardiothoracic Surgeon at the Mayo Clinic, drove home the point that “Myectomy works.” He focuses on creating a tailored surgical plan for every patient and said “What matters most is not just the operation itself-it is matching the right patient, anatomy, surgeon, and center.” He certainly had my attention with the video he showed of a real septal myectomy. Dr. Joshua Scheinerman, Cardiothoracic Surgeon at NYU Langone Health stepped up to the microphone next and largely agreed with Dr. Bagameri’s take. He, too, emphasized the improved survival rates with myectomy, saying “It will make you live longer and feel better.” He even called it the “Most complete and long-lasting technique to separate the inflow and outflow portions of the [left ventricle] – gold standard for relief of outflow tract obstruction.” However, Dr. Scheinerman performs a new Robotic Septal Myectomy on select patients using the Intuitive Da Vinci Xi Robot System. Using only a very small incision in the right side of the chest, this procedure avoids division of the breastbone (aka a sternotomy, aka what I had). We got to see a video of this surgery as well, which I thought might be scarier than the one done manually by Dr. Bagameri, but it turned out to be quite fascinating in its adaptability and precision. Lastly, Dr. Scheinerman touched on the Trans-Apical Beating Heart Septal Myectomy that’s being developed in China. “This won’t be the panacea some people are talking about,” he said. While he agrees it will be important to bring this option to the US and to do trials, he believes this will be another tool in the toolbox, just like the myectomy and the robotic surgery. All of which is to say he believes the future in surgery for HCM patients with obstruction is individualized care, understanding that all of us have different phenotypes, or symptom profiles, and the surgeries need to be tailored to each patient. There’s that pivotability again! Diagnostic Pivotability Dr. Milind Desai returned to the podium to share a significant change in how Cleveland Clinic is approaching HCM diagnostics: they have started using AI. He reported that the Clinic used AI to evaluate every patient’s EKG for HCM, even if it appeared normal to the physician. The AI tool discovered an additional 50(!) patients with HCM and provided a precision diagnosis. Dr. Desai also demonstrated that diagnosis via echocardiogram alone is challenging, showing us 4 HCM patient echoes that all looked completely different. In fact, the one that least looked like an HCM heart was the only patient who had a gene commonly associated with the disease. He joked that “this patient was told he had anxiety” before being correctly diagnosed. The room roared with laughter because so many of us have heard that fallacy from a doctor before. His punchline? “If you come to Cleveland Clinic, we can treat your anxiety with heart surgery.” The room roared again. Pivotability in Pediatrics Possibly the most rousing reaction from the crowd came during Dr. Jeffrey Bennett’s presentation. As Program Director of the HCM Center of Excellence at Cleveland Clinic Children’s, he reported on the positive results of the SCOUT-HCM trial, which studied the efficacy of the Cardiac Myosin Inhibitor Camzyos (Mavacamten) in pediatric patients. Based on those results, the FDA recently approved the medication’s use for “pediatric patients weighing at least 30kg (approximately 66 lbs) with symptomatic [obstructive] HCM.” The spontaneous applause began when Dr. Bennett described this as “a landmark event” and “incredibly exciting for our families,” later saying “It’s a new day for HCM.” During lunch, we met two families with pediatric HCM patients via Zoom. One family from California had spent over 400 days in Rochester, Minnesota awaiting a transplant at the Mayo Clinic. The other spent 200 days on the transplant list in Texas, and that child’s sibling also needs a transplant. While the connection to these families had some technical glitches, it took nothing away from their messaging, which pulled on the heart strings of everyone in the room. Both families wore their “Pivotability is My Superpower” t-shirts, of which they were eminently deserving. Patient Pivotability I think my favorite speaker of the day was Willie McLaughlin, father of Olympic Track & Field gold medalist Sydney McLaughlin-Levrone and an excellent former track athlete in his own right. Willie received his Hypertrophic Cardiomyopathy diagnosis as a result of multiple family tragedies. “I’m a direct result of my brother’s death,” he said, after meeting Lisa Salberg at his brother’s funeral and learning about the genetic component of the disease. A few years after his diagnosis, Willie went to his regular Center of Excellence at NYU for what he thought was a right heart catheterization procedure. Instead, he was told he needed a heart transplant immediately and couldn’t go home until he had one. 11 days post-op, he was finally released from the hospital with “no idea how to live as transplant patient, emotionally.” His pivotability and resilience were essential during that difficult time, and he adapted by helping mentor other transplant patients at NYU. Willie quoted Bob Marley, saying “You never know how strong you really are until being strong is your only option.” Willie and Sydney collaborated on a series of online modules called “On Track with HCM (https://ontrackwithhcm.com/),” which tackle topics in HCM like staying active, nutrition, and family. Of course, Willie is just one example of the pivotability of HCM patients. Throughout the day, many others were recognized with GEM Awards for their volunteer efforts on behalf of the Hypertrophic Cardiomyopathy Association over the past year. Each award recipient has pivoted from focusing on self to helping advocate for, educate, and support others with HCM. I was proud to be the recipient of a Gold GEM Award for my time spent as an Online Discussion Group Leader and HCMA Ambassador. Apart from my own recognition, which is always nice, I really enjoyed seeing my fellow volunteers recognized for their efforts, especially in front of this particular crowd of attendees. The patients also had our own moment to shine in the afternoon during a workshop exercise. Inspired by the Disney and Pixar film “Inside Out,” the HCMA’s graphic designer, Demi Jorge, has drawn cute, heart-shaped, cartoon emojis for Joy, Confusion, Anxiety, Anger, Hope, Disgust, Grief, Sadness, and Curiosity, in addition to Pivotability. During the workshop, patients were tasked with using these emojis (in sticker form!) to describe how we have felt at certain moments in our respective HCM journeys. My group, which included 3 other HCMA Ambassadors and one Ambassador’s spouse, had great conversations about how we felt at the time of our diagnosis, our emotions when we had to discuss our diagnosis with family members, and our reactions to finding the HCMA for the first time. Mental Pivotability Speaking of feelings, I would be remiss not to mention this final example of pivotability for the weekend…mental health. On Friday, October 9th, the HCMA held its first ever “Hearts & Minds” training, a CME (continuing education) program for psychologists and social workers. Those in attendance, both virtually and in person, were treated to 6 hours jam-packed with information about how to treat patients with HCM and other heart muscle disorders. The HCMA plans to put the training online soon, and those practitioners who complete the requirements will be added to a new directory resource for patients. I was fortunate to be in the room for most of the program, which was organized by Lisa Salberg, in collaboration with Dr. Sam Sears, a Cardiac Psychologist from East Carolina University, who was my favorite speaker from last year’s Patient Meeting. Other speakers included: Dr. Adaya Weissler-Snir from the HCM Center of Excellence in Morristown, NJ, Terrani Moore, LCSW, of East Carolina University Health, and Samantha McCrary, MS, Dr. Sears’ PhD student from East Carolina University. Dr. Sears knows pivotability is essential in mental health care for cardiac patients. A few of my favorite nuggets from his talk: * “Adversities continue. That’s why psychologic care matters.” * “I want HCM patients to look for ways that they’re safe in the presence of threat.” * 4.5% of the general population has PTSD. In heart patients, it’s 12%. * If you’ve seen the television show “This is Us,” then you’ve heard the phrase “The Big Three.” Well, in cardiac psychology, it’s a quite different Big Three: Catastrophic Thinking; Hypervigilance; and Avoidance Behavior. * Less than 1% of heart hospitals have psychiatric care, while 83% of cancer care centers have them. * Psychoeducation replaces uncertainty and misinformation with accurate information and a plan for the future. Ms. McCrary, who spoke both on Friday and Saturday, walked the mental health professionals through creating a clinical framework for HCM care using Leventhal’s Common-Sense Model. In her speech to patients, she used “The Odyssey” as a metaphor for the fact that uncertainty will always be part of our journeys. 37% of HCM patients meet criteria for anxiety disorder because “Our brains are good at keeping us safe. They are bad at keeping us happy.” But her final messages hit home. Each of us has what we need within us to build a raft and set sail. We can identify what’s controllable and stage a psychological comeback that will hopefully enable a cardiac comeback as well, in the form of self-management. Sound Bites from the Rest of the Speakers * “Echocardiography is the workhorse” in HCM diagnosis. In other words, echocardiograms are the most commonly used diagnostic tool, but MRI is still “essential.” -Dr. Sabahat Bokhari, Director, HCM Center of Excellence, Rutgers Robert Wood Johnson Medical School * About ¼ of HCM patients will develop Atrial Fibrillation (Afib) at some point in their lifetime, which is 4-6x higher than the general population. Afib increases risk of stroke. - Dr. Ethan Rowin, Associate Director, HCM Center, Lahey Hospital & Medical Center * The terminology of describing HCM as “heart failure” is a problem because it doesn’t mean you’re headed for sudden death or a heart transplant; we need to rethink how we frame it. “Most people with HCM can expect to live a normal number of years, doing normal physical activities, and die of something else.” -Dr. Steve Ommen, Medical Director, Mayo HCM Clinic * 35% of patients only had a gradient, or a significant increase in the pressures through the left ventricular outflow tract, a sign of obstructive HCM, after eating food. -Dr. Daniele Massera, Director, HCM Program, NYU Langone Health * Implanted cardiac device choices are moving away from Transvenous devices with leads into the heart because those wires have a shelf life of 20 years max, and they come with a higher risk of infection and challenges with removal. Newer options exist in the form of Subcutaneous ICDs, which were approved in 2012, and Extravascular (EV) ICDs, which were approved in 2024. Not every patient is a candidate for every type of device, so selections are made on an individual basis. -Dr. Adaya Weissler-Snir, Medical Director of the HCM Program at Atlantic Health System in Morristown, NJ * “Genetic testing being negative doesn’t necessarily mean that no one in your family is at risk.” The probability of having a gene that explains your HCM is only 30-50% of all HCM patients. “Everything we talk about in a visit is shared decision-making” and “There’s not one right decision.” -Dr. Alejandro (Alex) de Feria, Cardiologist & Assistant Professor, University of Pennsylvania (who is also an HCM patient) * Prior to 2020, HCM patients were told not to exercise, except for maybe golf and other sedentary sports. The LIVE-HCM Study resulted in the total removal of exercise restrictions, showing that individuals with HCM who exercise vigorously did NOT have more arrhythmias or other adverse events than the average population. In reality, those who exercised had higher quality of life and became more physically fit. -Dr. Rachel Lampert, Cardiologist & Professor, Yale School of Medicine * Our generic drug supply chain is in crisis. Regulation of drug quality is currently based on self-reported data. FDA approval rigor DOES NOT EQUAL quality and safety monitoring. Growing awareness of this issue has rare bipartisan support in Washington DC. -David Light, Co-Founder & CEO of Valisure I’ll be sharing a few additional sound bites from the meeting throughout the coming week on Notes (https://whatsherproblem.substack.com/notes). Conclusion Whew! If your brain is chock full of new information, then imagine how it felt to be in the room for a day that started early, ended late, and had few breaks. But our brains and hearts were equally full. Attendees moved on to an evening networking event where we could share our reactions to the day’s presentations and to connect. It was wonderful to spend time in person with other HCM patients, many of whom I only knew previously from online meetings and activities. We also took the opportunity to honor Lisa’s 30 years since founding the HCMA with a tribute video, slide show, and photo book…a project I worked on with my fellow HCMA Ambassadors. Given the number of people who contributed to the project, I can’t believe we managed to keep it a secret from Lisa, who is usually all-knowing! After the event, I still feel like I’m absorbing everything and catching up on my sleep, but my biggest takeaway is how motivational the experience was. It reinforced that I need to keep advocating, keep talking about HCM, and keep sharing my story. These activities have impact, and generations of newly-diagnosed HCM patients to come will get to have a better treatment journey as a result. Most of all, I need to focus on my own pivotability by evolving, shifting, and adapting to whatever my journey with Hypertrophic Cardiomyopathy throws at me next. #BigHeartBigLife Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below! This week’s questions: How would you rate your own skill level with pivotability? Did anything stand out to you about future diagnostic and treatment options in Hypertrophic Cardiomyopathy from this report? Links/References: https://www.pivotmethod.com/pivotability (https://www.pivotmethod.com/pivotability) HEART STRUCTURE (ECHO): Maximum Wall Thickness, Ejection Fraction (EF), Left Atrium Measurement, Resting LVOT Gradient, Provoked Exercise LVOT Gradient. BIOMARKERS: ProBNP, Troponin; MRI RESULTS: Scar Burden %; GENETIC TESTING RESULTS https://4hcm.org/learn/beta-blockers/ (https://4hcm.org/learn/beta-blockers/) https://4hcm.org/about-myosin-inhibitors/ (https://4hcm.org/about-myosin-inhibitors/) https://www.heart.org/en/health-topics/heart-failure/diagnosing-heart-failure/ejection-fraction-heart-failure-measurement (https://www.heart.org/en/health-topics/heart-failure/diagnosing-heart-failure/ejection-fraction-heart-failure-measurement) https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-first-drug-improve-functional-capacity-and-symptoms-children-rare-inherited-heart (https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-first-drug-improve-functional-capacity-and-symptoms-children-rare-inherited-heart) https://www.camzyos.com/modals/lvot-gradient-modal.html (https://www.camzyos.com/modals/lvot-gradient-modal.html) I spoke about the results of this study a bit in my recent Interview Series episode with Sylvia Baedorf Kassis about Clinical Research (https://whatsherproblem.substack.com/p/interview-series-sylvia-baedorf-kassis) (it’s still Health Literacy Month and a great time to check our conversation!) “Last Week Tonight with John Oliver” recently featured Generic Drug Quality, in a segment that featured Lisa Salberg herself. https://youtu.be/TM1EbMKhT4Y?si=lPMme8IWkVVEeRms (https://youtu.be/TM1EbMKhT4Y?si=lPMme8IWkVVEeRms) This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe (https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2)

2. 

   16 Oct 2026

   Q&A with Family Medicine Physician Dr. Jennifer A. Kabak

   U.S. medical student entry into Primary Care (Family Medicine) has fallen by roughly one‑third since its 1997 peak, from 2,340 medical school seniors to 1,512 in 2026. And despite record participation in the National Residency Matching Program (NRMP), Family Medicine filled only 83.6% of its positions in 2026, leaving 899 positions unfilled. An unnerving gap in the pipeline of incoming practitioners. I know how concerned I am about this as a patient, but I wanted to know more about the physician perspective. I reached out to Dr. Jennifer A. Kabak, Family Medicine Physician, and asked her some questions about her field of work. Dr. Jennifer A. Kabak is a Board-certified Family Medicine physician who sees patients in Prima CARE’s Somerset-Swansea Medical and Ambulatory Care Centers in Massachusetts.Dr. Kabak earned her Doctorate in Osteopathic Medicine at the New York Institute of Technology College of Osteopathic Medicine (NYITCOM). She completed her residency training in Family Medicine at Kent Hospital in Warwick, Rhode Island, where she also served as Chief Resident. Dr. Kabak has experience practicing Family Medicine in many diverse settings, from community health centers to offices where medical students and residents rotate to student health services. Prior to relocating to New England, she was on staff at New York University’s Student Health Service.Dr. Kabak is a member of the American Osteopathic Association, the American College of Osteopathic Family Physicians, and both the Massachusetts and Rhode Island Society of Osteopathic Physicians and Surgeons.Dr. Kabak provides comprehensive primary care to patients ranging in age from teens to the elderly, with a particular interest in preventive medicine and women’s health. As an affiliate of the Brown University Health Network, her patients are admitted to Saint Anne’s Hospital in Fall River, Massachusetts. I’m grateful to Dr. Kabak for her honest takes and the insight into her day-to-day work, as well as for recording her answers in the audio version of this issue! Debra: Dr. Kabak, when did you first realize you wanted to become a doctor? Dr. Jennifer Kabak: I had transferred to New York University to start my junior year of college. I was studying journalism and had taken a job to help offset the cost of tuition. I was working for an Ophthalmologist on the Upper East Side and really enjoyed the work. Patients would ask my opinion after hearing from the physician, and I did not feel competent to weigh in on their treatment plan. It got me curious, and I wanted to do and learn more. In my personal life, at the time, I was dating a medical student and learning a lot about the medical field. Those two experiences started to get me thinking about not just writing about health care but possibly practicing it. Debra: At what point did you decide to pursue Family Medicine/Primary Care, and why? Dr. Kabak: As previously mentioned, I worked for an Ophthalmologist for years and thought I may be following him into that field. But during my third year of medical school, I was exposed to clinical rotations. I had a great Family Medicine clerkship. I believe my previous experience as a journalist led me to practice Family Medicine. The same level of curiosity that makes a good reporter also makes a good Family Medicine physician. I enjoy the story. And there is always a story. When I interact with a patient, especially for the first time, I make sure to gather all the data and store it in the medical chart. And the next time that patient comes in, depending on the reason, I make sure to utilize that information to continue the connection. Debra: Do you feel like medical school and your residency prepared you well to practice Primary Care in the real world? Why or why not? Dr. Kabak: At the time of my training, I do believe that both medical school and residency prepared me to start practicing in the real world. I had great support with my fellow classmates as we all pushed each other to the finish line of graduation. And I was very lucky to land in a residency program with an amazing group of clinicians, who are some of my dearest friends today. I was allowed to reach for the stars and go after any and all experiences to make my time in residency a well-rounded journey. Debra: Should I read anything into the phrase “At the time of my training?” Do you think the training is different now? Dr. Kabak: I do think training is different now. I was last involved in teaching almost four years ago, and I can say, at that time, I noticed training was different. When I was a student and a resident, books still played a very prominent role in our education. I went to a tech school; we did have technology rolled into our education through the simulation lab and the ability to watch lectures online, but I also have a vivid memory of books bulging in the pockets of my white coat. I fondly recall surviving my pediatrics rotation with the bible of pediatrics, Harriet Lane, in my pocket. Today, technology is overwhelming. Smartphones are now in pockets instead of books, and information is immediately at your fingertips. I think these changes are good and bad. When I was teaching in New Jersey, I had an experience where the resident couldn’t answer my question about medication dosing despite sitting in front of his laptop. I think of this example and wonder if there is too much information out there and maybe, for some, it is difficult to identify the quality. My other thought is that maybe technology has made us a bit lazy. There is something to be said about looking up the answer because then, at least in my mind, you own that answer and will be able to recall it in the future. Debra: I know an issue that is important to both of us is the amount of time, or lack thereof, that Primary Care physicians are scheduled to spend with each patient, largely due to the way insurance company reimbursements are structured. Can you provide some insight into what that really looks like? How does it impact your patient care, and how does it impact your practice’s bottom line? Dr. Kabak: My day is broken into 20-minute appointment times, with an hour blocked off for lunch from 12:00-1:00pm, which is really catch-up time (sometimes my day bleeds into this hour, whether I am running late or sticking in additional patients, or dealing with all the administrative items). I do try to give my staff at least 30 minutes to eat lunch, have a breather, and not keep up with my crazy schedule. Speaking for myself, I can say I NEVER allow time to impact patient care. Sometimes I need less than the allotted time, sometimes I need more, and sometimes life happens and I need to pivot and deal with an emergency, so time goes out the window. If I am running behind, I always go into the patient with an apology and let them know (privacy respected) why I needed the extra time. And, most often, I never get any pushback because my patients know I am giving each person his/her/their time and listening and reacting. Now, how does it impact my practice’s bottom line? That is a question for my boss! As a sole practitioner, I am very cognizant that I need to see patients to bring money into the practice. But I NEVER sacrifice patient care to make that happen. If it means I don’t get to eat lunch at “lunch time” or I don’t get a minute to use the bathroom until the end of the day, or I have to run and finish notes at a later time in the day, I do that. In a perfect world, I see patients in a timely manner in a set schedule, and at the end of the day I shut my computer and go to my second life of being a mom, wife, and daughter. But unfortunately, that is not realistic. And while that is not ideal, what would make it less traumatic would be if patients recognize that physicians have a life outside of medicine that we would love to be 100% present at. So, the yelling, screaming, and demanding that they project onto us is not appreciated. For the most part, we are all just trying to manage the “work-life balance.” Debra: Patients, myself included, perceive that some doctors want to treat the symptoms of a problem but not find the root cause. I’m curious to hear your take on this. Dr. Kabak: Sometimes, if it is truly something quick and easy and symptom-oriented, then treating the symptoms is not such a bad idea. If symptoms persist, then there needs to be a deeper dive, which would lead to trying to diagnose a cause. Now, this is where it can get a bit sticky. Sometimes, trying to get to the root cause is not so easy, and I think it then depends on the physician…and the relationship between the doctor and the patient. As a Primary Care physician, I have a good relationship with my patients and know them pretty well. I remember a patient calling me during COVID (when we were not in the office but doing a lot of telemedicine), and she had been seen by an outside Urgent Care a few times for a “sinus infection.” She was not getting better and finally decided to call my office. She had a history of sinus infections, but when I got on the phone with her, I stopped her and told her she did not have a sinus infection and whatever was going on, either she was going to hang up and call 9-1-1 or I was going to because she could not complete a sentence on the phone (due to shortness of breath). I like to pride myself that I know my patients fairly well, and this was not a symptom of her typical sinus infection. Debra: During your career, you’ve experienced the transition from paper files to Electronic Health Records systems and, now, the advent of AI tools. How has that changed the way you interact with patients and document their care? Dr. Kabak: The transition from paper to electronic health records, for me, has not been such a major change. I believe I am able to connect with my patients even with a computer in the room and I sometimes utilize it to show them pictures or look up some things they may be using. AI is still a bit too advanced for me, and while it is slowly leaking into my exam rooms, I am not using it so much that I feel I can speak intelligently about it at this time. Debra: Why do you think the Primary Care workforce is shrinking and fewer medical students are choosing it as their specialty? What can be done to change that? Dr. Kabak: Primary Care is hard. Primary Care is not well-respected. Primary Care is not well-paid for all the things we have on our to-do list. Primary Care is sometimes the “dumping ground” for everyone else in the medical field. For example, a patient sees his/her/their Cardiologist, who recommends weight loss. The patient asks if any of those new medications would be helpful. The cardiologist responds with a resounding “Yes!” but then tells them to call the Primary to send in the prescription, to see if it will be approved, If it is not approved, it is now up to the Primary to fight for the approval. And if it is denied, it is the Primary Care physician who gets yelled at by the patient. Yes, you read that right…yelled at. We are told we must have filled something out wrong, sent it in wrong, made some error (though most likely the insurance just does not want to cover it due to cost). So, I am not sure how to fix the shrinking workforce because it is multifactorial: * One of the biggest things for me would be to focus on a way to minimize or erase my student loan debt. Because I currently do not work in the not-for-profit world, I am not eligible for student loan forgiveness. Certainly, my work as a Primary Care physician is no less, and I am still available and accessible for patients. So, eliminating barriers to loan forgiveness would definitely be a start. * Respect and recognition of Primary Care and utilizing us as a prominent member of the team and not a dumping ground to get things done. * Showcasing the beauty of the doctor-patient relationship. * Ensuring that the Primary Care physician has the support to pull off all these demands by making sure we can afford to staff our offices and practices. Just to name a few things… Debra: I’m interested in having you elaborate on “showcasing the beauty of the doctor-patient relationship.” Any specific ways you would recommend doing this in order to draw more future practitioners to Primary Care? Dr. Kabak: My immediate thought was “marketing.” Social Media. There is definitely some navigating to make sure there are no privacy violations or misinformation. I think about StoryCorps on NPR-maybe doing some of those. I think about using the social media platforms to showcase the many different opportunities someone can go into if they choose to specialize in Family Medicine. And utilize social media to show the good, bad, and ugly of Family Medicine and maybe the higher ups will notice and swoop in to help solve! Debra: Is there anything else in the field of Primary Care that you think it’s important for chronic illness patients to know? Dr. Kabak: Be KIND. Chronic illness is most often a team approach. Pick your team well, and make sure that all members of the team communicate. After we finished our Q&A, Dr. Kabak reached out to me with an Opinion piece from (https://www.nytimes.com/2026/09/25/opinion/ai-doctor-medical-students.html?unlocked_article_code=1.ElE.CTrI.LF64qGBLAq3Z&smid=url-share) The New York Times (https://www.nytimes.com/2026/09/25/opinion/ai-doctor-medical-students.html?unlocked_article_code=1.ElE.CTrI.LF64qGBLAq3Z&smid=url-share) about AI in Primary Care and medical school training (https://www.nytimes.com/2026/09/25/opinion/ai-doctor-medical-students.html?unlocked_article_code=1.ElE.CTrI.LF64qGBLAq3Z&smid=url-share) (gift subscription link), which is a perfect follow-up to our conversation. Thank you again to Dr. Jennifer Kabak for sharing her experience! And if you know someone in medical school who hasn’t decided on their specialty yet, tell them how grateful patients are when they can find a good Primary Care doctor like her. This week’s questions: If you are a patient, has your experience with Primary Care changed at all over the last few years? If you are a doctor, does Dr. Kabak’s experience resonate with you? What suggestions do you have to counteract the shrinking workforce problem? This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe (https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2)

3. 

   9 Oct 2026

   Celebrating 10 Years Since Open-Heart Surgery

   “Anniversaries live in your body, not just your mind.” -Tanmeet Sethi, MD Surgiversary #10 Ten years. TEN YEARS! A whole decade has passed since I had open-heart surgery to remove the obstruction to blood flow through my heart, caused by the genetic heart condition Hypertrophic Cardiomyopathy (HCM). Last year at this time, I wrote about how I struggle to celebrate Surgiversaries (https://whatsherproblem.substack.com/p/surgiversary), or surgical anniversaries, and wondered how I would celebrate the huge milestone of ten years in 2026. Well, the big Surgiversary week is here, and I am celebrating… by living! As you read this, I am traveling to visit family and friends, and to attend the Hypertrophic Cardiomyopathy Association’s (https://4hcm.org) Annual Patient Meeting. Travel. Filling my emotional cup. Continuing to be a student of my disease. Convening with other HCM patients who have been through similar experiences, including open-heart surgery. I think that’s a pretty great way to mark the occasion of living ten years beyond a day that was both transformative and traumatic. I’ve never written publicly, in detail, about the septal myectomy, the open-heart procedure itself, despite writing about many of the events and emotions that surrounded it (https://whatsherproblem.substack.com/t/hypertrophic-cardiomyopathy). Until now! What is a Septal Myectomy? In 2011, the first cardiologist I ever saw told me, on day one, that I would probably need open-heart surgery at some point to relieve my symptoms. I chose not to believe him. He hadn’t really explained why he was recommending this procedure or how it was done. Not well enough for me to get it and buy into it anyway. Open-heart surgery sounded too scary to consider. So, let’s do some definitions that I wish someone had shared with me during that first cardiology appointment: Septum means “a dividing wall or membrane especially between bodily spaces or masses of soft tissue.” In the case of the heart, a “band of muscle called the septum separates your two ventricles. In hypertrophic cardiomyopathy, the septum thickens and may bulge into your left heart ventricle. This bulging blocks blood flow, meaning your heart has to work harder to pump blood through your body.” The ventricles are the lower chambers of your heart. Myectomy, and its sister, the myotomy, “are related surgical procedures, both involving careful intervention on muscle tissue to restore proper function or relieve blood flow obstruction. Myotomy involves an incision, and myectomy involves the removal of damaged tissue.” Therefore, when you combine them, a Septal myectomy is “surgery to thin out the wall between the left and right side of the heart... Thinning the septum also reduces mitral valve regurgitation, a condition in which blood flows backward into the atrium, or upper chamber of the heart. Septal myectomy is the most commonly performed surgical procedure for people with HCM.” If all this terminology is new to you, no worries! Most non-cardiology doctors I encounter don’t know what it is either. I’ve had at least a dozen confuse it with a myomectomy, which is “a surgery to take out fibroids from the uterus.” A completely different procedure. It also differs from common bypass surgeries. Understanding Why I Needed a Septal Myectomy So, in 2012, when I sought out a Cardiologist who specialized in Hypertrophic Cardiomyopathy, I went into my first appointment with him feeling undereducated about the disease and the reality of my options. Dr. Martin Maron, who was at Tufts Medical Center in Boston, at the time, quickly educated me by showing me my own Cardiac MRI images. Here is a never-before-seen passage from my memoir-in-progress about the day I finally understood what a septal myectomy was and why I needed to have one: My Cardiac MRI showed a “left ventricular anteroseptal wall thickness” of 19mm. Right in the sweet spot for someone with the obstructive version of Hypertrophic Cardiomyopathy. Though, I was delusional enough to think, “well, 19mm isn’t so bad compared to how big some HCM patients’ septa are, if they can go all the way up to 60mm.” Right? Wrong! In fact, so wrong that Dr. Maron guided the next part of our conversation towards the very topic I had been dreading. Open-heart surgery. “Deb, the other less-invasive surgical options are not really great options for you,” he said. I listened, horrified. A septal ablation, he explained, which is when they burn off some of the excess heart muscle, might leave me with new arrhythmias and wouldn’t be complete enough or have long-lasting results. A cardioversion, where they shock your heart, was reserved for people who were already having severe arrhythmias, but that wasn’t how my symptoms were displaying themselves. “Your problem is the thickness of the septum and its interference with the mitral valve, along with some problems with the papillary muscles,” he said. “The single best solution for that is a septal myectomy.” I would be shocked if my jaw wasn’t actively hanging on the floor as he explained what a septal myectomy (pronounced: sep-tull my-eck-toe-mee) entails, as opposed to the vague concept of one that I had cooked up in my overactive brain. It is full-on open-heart surgery. They put you on bypass, saw your sternum in half, slice into your heart, and cut out the excess heart muscle, thereby removing the obstruction. Oh, and they would re-position my mitral valve while they were in there, all before putting my chest back together with some combination of wires and glue. I don’t phrase it that way to be flippant. Quite the opposite. Because once I saw my Cardiac MRI, heard Dr. Maron’s assessment, and understood what a septal myectomy was, it was abundantly clear that it was the right treatment option. Knowing it was the right treatment option didn’t mean it was easy to accept, but it did give me clarity that a septal myectomy would become part of my treatment path, and I embarked on a years-long journey to accepting that. What happens during the surgery? According to the Cleveland Clinic, one of the highest-volume surgical centers performing septal myectomies, the surgeon: * “Makes a large incision down the middle of your chest and separates your breastbone (sternum) to reach your heart. * Connects you to a heart-lung machine that takes over the work of your heart and lungs during surgery. * Removes the thickened portion of your septum. * Disconnects the heart-lung machine. * Puts your breastbone back together and closes the incision with absorbable sutures. A septal myectomy usually takes between three and four hours.” My medical records tell me that I was on bypass for 139 minutes, and my surgery took a total of approximately four hours. Beth Israel Lahey Hospital & Medical Center in Burlington, Massachusetts, where Dr. Maron and his team now run their Hypertrophic Cardiomyopathy Center of Excellence, has a helpful video depicting how the surgery is done (note: this video uses digital graphics, rather than real surgery footage): What is the recovery process like? Most myectomy patients are in the Intensive Care Unit (ICU) for a day or two post-op, then move to a step-down unit for 3-5 days before being discharged to their home. It’s best to have friends or family around to help afterwards because there are restrictions on lifting and reaching. I was in the Cardiac ICU for 6 days because I developed complete heart block from the surgery. The electrical signal from the upper chamber of my heart was no longer reaching the lower chamber. I ended up needing a second surgery to place an Implantable Cardioverter Defibrillator (ICD), which is both a pacemaker and a defibrillator. But on day 7, I finally made it to the hospital’s step-down unit, and I was released on day 9. I’ve talked to some septal myectomy patients who were back to most of their regularly scheduled activities after 8 weeks. Most patients fully recover in an average of 3 months. It took me a year and a half. So, it’s a pretty broad spectrum. Some people need little or no physical or occupational therapy post-op. I had 10 months of cardiac rehabilitation, which was essential to my recovery process. Once I had fully recovered, my symptoms did improve. I remember Dr. Maron telling me that something like 80% of septal myectomy patients feel 80% better afterwards. That percentage is even higher now, as they’ve fine-tuned the procedure in the last decade. “Septal myectomies have high success rates. In one study, 94% of people experienced symptom improvements after surgery. Long-term, people who had a septal myectomy had the same survival rates as the general population.” My advice for other septal myectomy surgical candidates My Dr., Marty Maron, is the son of Dr. Barry Maron, one of the earliest cardiologists to focus his efforts on treating patients with Hypertrophic Cardiomyopathy. On Hypertrophic Cardiomyopathy Awareness Day in February 2022, Barry Maron said something that resonated with me so strongly that I had to write it down: “Septal myectomy is about the ability to reverse heart failure.” Short, simple, but jam-packed with information. In that one sentence, the elder Dr. Maron summed up just what an important medical advance the septal myectomy is. I had spent so much time resisting the surgery and being terrified to go through with it that I never stopped to consider how lucky I was that surgery was even an option for me. And that the odds were really good it would help me. If I didn’t have an obstruction, I would have been almost out of options, at that time, when the medications didn’t relieve my symptoms (https://whatsherproblem.substack.com/p/what-if-there-had-been-another-treatment). A septal myectomy was, and is, HUGE progress in HCM care. I wish I heard Dr. Maron say this many years earlier. Now, I share the sentiment that we are lucky to have this surgical option with other HCM patients who are considering a myectomy as part of their treatment plan. I also offer three other pieces of advice: * Only consider having the surgery done at a high-volume center. Meaning, a Center of Excellence in Hypertrophic Cardiomyopathy, where the surgeon specializes in septal myectomies and performs them regularly. Outcomes are better. * Attend the Hypertrophic Cardiomyopathy Association’s Pre-Myectomy Education Session for Individuals Scheduled for Surgery (https://secure.4hcm.org/nx/portal/event-detail?event=5180). It’s the best way to prepare. * Have your support system around you. You’ll need them, even if things go smoothly and it’s for a short time. What surgical advancements are ahead? While the septal myectomy was indeed an excellent advancement in HCM surgical treatment, it has also been the only one for more than 60 years. But I’m pleased to report that several others are on the horizon. In short, there are multiple options coming for patients with the same diagnosis I received in 2011, and none of them include having your sternum sawed in half. That’s amazing. I’m looking forward to learning more about these new procedures during a session at the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting this weekend, and I will report back in my reflections on that event two weeks from now. What would I tell the October 2016 pre-op version of myself? You did it! You overcame all of the fear and uncertainty that came with open-heart surgery, and it gave you the opportunity to keep contributing to the world. You will still be here ten years later to tell your story, and it will help other people when you do. It won’t be an easy road, by any stretch of the imagination, but it will still be worth it. You can do hard things, so hang in there. Here’s to the next decade! This week’s questions: Had you ever heard of a septal myectomy before? Do you feel like you could explain it to someone else now, at least in broad terms? References: https://www.merriam-webster.com/dictionary/septum (https://www.merriam-webster.com/dictionary/septum) https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy (https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy) https://umiamihealth.org/en/treatments-and-services/cardiac-and-vascular/cardiac-surgery/myotomy-and-myectomy (https://umiamihealth.org/en/treatments-and-services/cardiac-and-vascular/cardiac-surgery/myotomy-and-myectomy) https://nyulangone.org/conditions/hypertrophic-cardiomyopathy/treatments/septal-myectomy-surgery-for-hypertrophic-cardiomyopathy (https://nyulangone.org/conditions/hypertrophic-cardiomyopathy/treatments/septal-myectomy-surgery-for-hypertrophic-cardiomyopathy) https://www.mayoclinic.org/tests-procedures/myomectomy/about/pac-20384710 (https://www.mayoclinic.org/tests-procedures/myomectomy/about/pac-20384710) https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy (https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy) https://www.lahey.org/services/heart/specialty-programs/hypertrophic-cardiomyopathy/septal-myectomy (https://www.lahey.org/services/heart/specialty-programs/hypertrophic-cardiomyopathy/septal-myectomy) https://my.clevelandclinic.org/health/diseases/17056-heart-block (https://my.clevelandclinic.org/health/diseases/17056-heart-block) https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy (https://my.clevelandclinic.org/health/treatments/17461-septal-myectomy) This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit whatsherproblem.substack.com/subscribe (https://whatsherproblem.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2)

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