Stanford Children's Health | Lucile Packard Children's Hospital Stanford’s Post

More great news about the potential of the SCD! A new manuscript now online summarizing 4 pediatric & adult cases where SCD technology assisted in the transition of patients to successful organ transplant or device implantation. (https://lnkd.in/d2C99ADy)

Communicating a diagnosis to a patient is never easy. Delivering that news in a method that is simultaneously understandable, informative, and compassionate is even harder. When patients struggle to come to terms with a difficult diagnosis, ensuring that they have a full view of the path forward is always our top priority.    Education is key. Patients should be empowered with not only all necessary knowledge about their condition, but with the tools and resources to make decisions regarding care and treatment plans. Remaining empathetic and patient throughout the process — even if it involves repeated conversations — builds trust, while working to move through denial and establish care strategies.    Yale New Haven Hospital Yale New Haven Health Smilow Cancer Hospital #HowWeHospitalist #HospitalMedicine #PatientCare #Physicians 

Specialized neurologic care significantly improves the quality of life for children with complex neurologic diseases and their families, according to Dr. David Neil Toupin of Kentucky Children’s Hospital. Personalized, multidisciplinary care—delivered by a team of physicians, therapists, genetic counselors, and social workers—addresses the broad range of challenges these children face, from health issues like seizures and scoliosis to developmental and psychosocial difficulties. Recent advancements in treatments, such as gene therapy for Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD), offer new hope, but require careful coordination among specialists. Beyond medical treatment, this collaborative approach provides crucial support for families, helping them navigate the emotional, physical, and financial challenges of caring for a child with a complex neurologic condition. Ultimately, specialized care goes beyond treating the disease; it focuses on improving the overall well-being of both the child and their family, ensuring the best possible outcomes now and in the future. #neurology #specialized #personalized With the Specialist combines artificial intelligence with a board certified neurologist to enhance neurological care in the primary care setting. When you don’t have access to a neurologist, we can help bring specialized neurologic care to you and your patients. #withthespecialist #aiinhealthcare #innovation https://lnkd.in/gzJzN8UZ https://lnkd.in/gExrwg2P

We must talk about the realities of being a transplant recipient, not just to highlight the hardships but to inspire change. Transplant surgery is a one-day event that leads to a lifelong journey of living immunosuppressed. While it’s a gift that brings a newfound appreciation for life, it also comes with immense responsibility and challenges that many in our community silently endure. 🫶 I recently had the honor of speaking with the medical affairs team at Vera Therapeutics, Inc. in Texas on transplantation and patient advocacy. During my presentation, I shared this slide while highlighting the realities we face as transplant recipients—because it’s not just my story, it’s our story. 💞 This slide, with pictures of myself and other transplant recipients, illustrates some of the hurdles we navigate post-transplant: daily medications, lab work, side effects like hair loss, weight gain, cancer risks, and the isolation of being immunosuppressed. We also face hospital visits, viral infections, and the emotional toll personally and on our caregivers, compounded by barriers and health disparities. 💪 But with these challenges come opportunities to improve care and outcomes for future generations. Gratitude remains at the core of my journey—without my donors and the miracles of modern medicine, I wouldn’t be here today. 🙏 Let’s continue to strive for a world where patients don’t need to reach the point of requiring a transplant. And for those of us who do, may we one day see a future where one transplant is all we need, free from the ongoing challenges and complications. 🙌 #TransplantJourney #PatientAdvocate #MedicalAdvancement #Gratitude #TransplantLife #KidneyDisease #Immunosuppressed Amit Sharma

📈 How have treatments for multiple myeloma evolved? 📺 In this video, hear insights from Rafat Abonour, MD, of the Indiana University School of Medicine, who discusses what nurses should know about the recently expanded indication for ide-cel in multiple myeloma, the KarMMa-3 trial, and more. ➡️ Watch: https://buff.ly/3zkJB3q #mmsm

We sat down with Julie Khlevner, MD, of Columbia University Irving Medical Center, to discuss new efficacy endpoint data from a phase 3 study of linaclotide in pediatric patients with functional constipation. Watch the full interview here: https://lnkd.in/emvRCJpQ #Gastroenterology

Although widely performed, high quality data supporting laparoscopic cholecystectomy for biliary dyskinesia is lacking. This narrative review discusses diagnostic strategies, management, and outcomes data for biliary dyskinesia in the pediatric population. https://ja.ma/45Ov3oU

This article summarizes our experience with extensive pulmonary arterial branch reconstruction in one of the very challenging pathology we face in our subspecialty which is Alagille syndrome. The challenges in the current small but rare series is the combination of supra -systemic right ventricular pressure and advanced liver disease to the point that some was referred for liver transplantation as their first referral before discovering their Allagile cardiac component. A multidisciplinary team approach in these patients are quite important and the need for early cardiac intervention is needed to facilitate their next step in terms of liver transplantation.

I struggled with this article as I read it, between anger and just plain sadness. What do we say to these patient's families? The comment "The previous use of race-specific spirometry equations led to further unnecessary and avoidable delays in transplantation among Black and other non-White patients that ultimately may explain why fewer non-White patients receive lung transplants after being listed." #noonecaresThis is one of the most comprehensive articles I have read on this subject. I have so many questions about race-based medicine. Who determines the race? In this case, why did it take over 200 years to figure that the physician who came up with these equations was simply a racist? One of the biggest issues I have is, there is no sit down and discuss it with the patient. Does the patient have the right to refuse the use of the equation? Not only PFT but the eGFR? That would be the true informed consent. When I had my PFT done in Guyana they had a choice of "mixed" because I discussed it with my provider and the young lady doing my procedure. This should be explained to the patient. Harm is being done to patients and what happens, nothing??? Another comment "First and foremost, race is a social construct and not a biological one". Well, America doesn't understand that, therefore much education is still needed. Between seeing a new form of palette to see what pigment my skin is for a pulse oximeter or being called a deeply pigmented person, I cannot decide what I find more insulting. But as a Black, woman, person, academic, educator, and most importantly patient just speak to me and inform me about my choices as a patient which is your duty. Healthcare disparities are a patient safety event. #informedconsent #blacklivesmatter https://lnkd.in/gEKemcyv

At the International Liver Transplantation Society, Dr. Janina C. Eden shared UMCG's experience with prolonging machine perfusion for up to 20 hours using cold machine perfusion. Their study showed that donor livers can now be stored longer, making it possible to perform transplants during regular daytime hours. This breakthrough has proven to be just as safe and effective as immediate transplants, with no increased risk of complications. Since early 2023, almost all liver transplants at UMCG have been scheduled during the day, improving team readiness and overall outcomes. This innovative approach, a world first, not only enhances patient safety but also contributes to a sustainable work environment for medical staff. Watch Dr Eden when she shares their experience. Learn more about the publication here: https://lnkd.in/dqj8Cdi7 #LiverAssist #HOPE #transplant #liver #extendinghorizons #paradigmshift