Being Proactive in One's Selfcare

Send us Fan MailAdapted from his video, in this episode of All Things Amyloid, Dr. Mat Maurer, cardiologist at Columbia University Irving Medical Center discusses the importance of developing a broad differential in order to diagnose this rare and potentially life-threatening yet treatable disease. He shares a typical but unfortunate case of cardiac amyloidosis, along with statistics of misdiagnosis and delayed diagnosis. Dr. Maurer lists common reasons for missing diagnosis of cardiac amyloidosis, ranging from an under-appreciated cause of HFpEF, non-specific symptoms, behaves as a great masquerader of other issues, and an outdated/incorrect view that this is an untreatable condition. His concluding point … “The Key to Correct Treatment is Diagnosis, Diagnosis, and Diagnosis.” His video can be found in the Education Hub on Mackenzie’s Mission website. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIt’s that time of year for Medicare Open Enrollment - a season that impacts so many of our amyloidosis patients. I’ll be speaking with Ann Kayrish, an expert in this area and someone who worked for decades helping Medicare beneficiaries make better choices for both the State Health Insurance Assistance Programs and the National Council on Aging. Today we discuss the different ways doctors participate with Medicare and how participation rules can directly impact your out of pocket costs. We’ll discuss how and where Medicare covers some of the most common (and expensive) amyloidosis treatments and where people can turn if those costs become too much. Lastly we’ll learn what you can expect Medicare to cover if you find yourself enrolled in a clinical trial. Of note, this is Part 2 of a 2-Part discussion on Medicare, so please see our recent episodes for Part 1.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailCaregiving seems to be a universal role that many of us play at some time in our lives, whether we are ready for it or not. It may be for a child, parent, spouse, family member, or friend who is facing illness. Patient needs can vary widely - from permanent 24/7 need, to temporary. The challenges they take on can come from just about anything, which is why the act of caregiving is a universal gift. So how do caregivers adapt their ongoing lives to these patient needs, and how do they care for themselves? We’re going to explore this in our discussion with book and podcast author Jessica Patay, who will share her personal experience caring for her son, Ryan. To learn more about her work please visit her website, https://www.wearebravetogether.org/.

Send us Fan MailIt’s that time of year for Medicare Open Enrollment - a season that impacts so many of our amyloidosis patients. I’ll be speaking with Ann Kayrish, an expert in this area and someone who worked for decades helping Medicare beneficiaries make better choices for both the State Health Insurance Assistance Programs and the National Council on Aging.  During our conversation we hope to provide you with a basic understanding of Medicare - the largest insurer of older adults. We’ll review the critical decisions you face when you first enroll, as well as the decisions you must make about your coverage each year. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailAmyloidosis patients often experience GI issues, both before and after diagnosis. The commonness of these symptoms can increase the difficulty of diagnosing amyloidosis. Adapted from her video “Amyloidosis and the Gut” Dr. Melissa Hershman, assistant professor from the OHSU Division of Gastroenterology & Hepatology, provides an informative overview of how, and where, amyloidosis can present in the G.I. tract. She reviews patient symptoms, many of which are nonspecific and can be associated with other more common issues, delaying diagnosis. Dr. Hershman goes through how G.I. amyloidosis is tested for, where in the G.I. tract biopsies are most commonly performed, and how the tissue is stained for diagnosis by pathology. In closing, she summarizes the array of treatments available to assist patients. Her video can be found in the Education Hub on Mackenzie’s Mission website. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn today’s episode we’ll be talking about that invisible fight that every patient with a challenging disease goes through … the battle of emotional health. What amplifies this fight is that it is unseen, making it so much more difficult to navigate. Only you can feel these emotions, but you are not alone. With me today is Liz, a fellow AL amyloidosis patient. She will share her emotional health journey, how she has been able to find a good place, and share ideas that might help others. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailHas taking care of yourself taken a back seat to your amyloidosis? It could happen easily, even without intention. And whether intended or accidental, how do you get back on track? Our guest today – Dr. David Lavine -- is going to talk to us about that. He’s a retired physician and amyloidosis patient who is committed to helping our community improve our wellness. NOTE: this is not medical advice and should be discussed with your physician. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailHereditary amyloidosis not only affects the patient. It’s about their family, both immediate and extended, as well as past and future. We are learning about amyloidosis at an exponential pace, allowing families to understand their roots like never before. Today we’ll talk with Sean about how his trip to Ireland to support the local amyloidosis community allowed him to further uncover his own family history. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn this episode of All Things Amyloid, we are treated to a 40-year perspective of this disease. Adapted from his video “AL Amyloidosis: The Past, Present, and Future” Dr. Morie Gertz, professor of medicine at the Mayo Clinic in Rochester and world-renowned expert in amyloidosis, shares his views on the past, present, and future treatments of AL (light chain) amyloidosis. Over his four decades of experience with this disease, he has diagnosed and treated thousands of patients, advanced research, and managed countless clinical trials. This makes him the perfect professor to orate on the dramatic evolution of treating this historically devastating disease to the optimism of today, and the breakthrough world of tomorrow. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn today’s episode we’ll be talking about genetic counseling basics. And while many aren’t familiar with genetic testing, this topic is important for patients who have one of the more than 130 types of genetic variants of hereditary amyloidosis. Our guest is Tiahna Moorthy, a certified genetic counselor, who will discuss what patients need to know. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).