News & Events2019-01-04T17:31:24-05:00

World’s First HIV-Positive to HIV-Positive Heart Transplant Performed

August 4th, 2022|

Earlier this spring, a woman in her 60s became the first to receive an HIV-positive to HIV-positive heart transplant. She suffered from advanced heart failure and received the donation, which happened simultaneously with a kidney transplant, during a four-hour surgery at Montefiore Health System in the Bronx. The woman spent five weeks recovering in the hospital and is currently being monitored by transplant physicians at Montefiore. In 2013, the HIV Organ Policy Equality Act enabled people living with HIV to donate their organs to HIV-positive recipients, but this is the first time this opportunity has been able to happen for heart transplantation. Montefiore is one of just 25 centers in the U.S. that is able [...]

Will the COVID-19 Pandemic Ever End?

August 1st, 2022|

By Alan S. Kliger, MD, Clinical Professor of Medicine, Yale School of Medicine, and Chair, Excellence in Patient Care Advisory Committee, American Society of Nephrology Some recent quotes I’ve heard - - - I’ll bet you have too: “Who can even pay attention when the subject of COVID-19 is raised?” “Enough already – I’m through with it” “What’s the difference? Even with vaccines and boosters, I still got COVID twice!” After nearly three years of this pandemic, COVID-19 infection has gone from a frightening and deadly disease to a major disruptor of our lives, to annoying background noise for most of us. And yet, the emergence of the Omicron BA 5 variant makes COVID-19 as [...]

The New 988 Suicide & Crisis Lifeline Has Launched

July 21st, 2022|

As of July 16th, people experiencing a mental health crisis (or their family and friends) can call or text 9-8-8 to reach help. The new 988 Suicide & Crisis Lifeline is modeled after 911 in order be easier to remember and provide a quick way for those in crisis to connect to a trained mental health professional, 24/7. The Lifeline is a national network of over 200 local crisis centers, providing free and confidential emotional support, along with connection to local resources, if necessary. When calling into the Lifeline, you will: First hear an automated message – this will outline additional options while you call is routed to your local network crisis center. Hear some [...]

Finding Your Balance Could Lower Your Risk of Death

July 5th, 2022|

A new study out of Brazil shows that being able to stand on one leg for at least 10 seconds is linked to having a lower risk of death over the next seven years. Researchers have found that people who were middle-aged or older who could not perform the 10-second standing test were almost four times as likely to die of any cause in the coming years. While it has been known that falls are a major cause of injury and death worldwide, this new study has shed light on falls not being the only problem of having poor balance. Improving nonaerobic fitness (balance, flexibility, and muscle strength) can help mitigate not only falls, but [...]

Just how accurate are rapid antigen tests? Two testing experts explain the latest data

July 1st, 2022|

Once in short supply, rapid antigen tests are now available throughout the U.S. Nathaniel Hafer, UMass Chan Medical School and Apurv Soni, UMass Chan Medical School As of May 2022, the U.S. is experiencing another uptick in the number of COVID-19 cases. High rates of infection in Europe and Asia, along with the continued emergence of new sub-variants, such as omicron BA.4 and BA.5, raise concerns that another surge could be on the way. Even though demand for COVID-19 tests greatly overwhelmed supply earlier in the pandemic, rapid home tests are more available today. While home tests provide a quick, accurate result, the flip side is that many test results are no longer reported [...]

Value-Based Health Care & Medicare – Weighing the Pros and Cons

June 14th, 2022|

Value-based care has become a hot topic in the health care industry. The model of paying providers bonuses for better patient health outcomes and penalizing them for poor outcomes may seem like a great idea and one that would encourage a more holistic approach to patient care. Some health care experts have concerns about what this means for people on Medicare Advantage (MA), though; specifically, there may be more focus on costs and less focus on quality. Janice Horowitz, author of Health Your Self, has three primary concerns when it comes to value-based care in MA plans: Restrictions on where you can go for treatment – Value-based care is built on having one general primary-care [...]

Medicare Surprise: Drug Plan Prices Touted During Open Enrollment Can Rise Within a Month

June 6th, 2022|

By Susan Jaffe May 3, 2022 Something strange happened between the time Linda Griffith signed up for a new Medicare prescription drug plan during last fall’s enrollment period and when she tried to fill her first prescription in January. She picked a Humana drug plan for its low prices, with help from her longtime insurance agent and Medicare’s Plan Finder, an online pricing tool for comparing a dizzying array of options. But instead of the $70.09 she expected to pay for her dextroamphetamine, used to treat attention-deficit/hyperactivity disorder, her pharmacist told her she owed $275.90. “I didn’t pick it up because I thought something was wrong,” said Griffith, 73, a retired construction company accountant who [...]

Blood Sugar Testing to Manage Type 2 Diabetes in Patients Who Don’t Need Insulin

June 1st, 2022|

Checking your blood sugar daily may not help you manage your type 2 diabetes. If you have type 2 diabetes, it’s important to keep the amount of glucose, or sugar, in your blood at a healthy level. Many patients check their blood sugar at home each day. Patients place a drop of blood from their fingertip onto a test strip; then they insert the strip into a home glucose meter. This test measures your blood sugar level at that moment. People who use insulin check their blood sugar often so that they know how much insulin to take. But if you don’t use insulin, recent research shows that daily blood sugar testing may not help [...]

Advocate for Your Health!

May 27th, 2022|

Written by Orlando A. Torres, a DPC Patient Ambassador from Guaynabo, Puerto Rico Last year, I participated in my first Dialysis Patient Citizens (DPC) virtual Fly-In. DPC is an advocacy organization that represents all kidney patients in our community. The Fly-In was a virtual event where kidney patients, along with DPC staff, and other advocates, engaged in conversations with Congress members and their staffers in relation to new legislation to benefit renal patients. We discussed the concept of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act that extended Medicare coverage of life saving immunosuppressive medications for the life of the kidney transplant. This bill, which was signed into law, will take [...]

Telehealth with a Mental Health Professional: What to Know Before You Start

May 5th, 2022|

By Kirsten Weir If you or a family member are managing chronic kidney disease, you’re probably thinking a lot about physical health—the health of the kidney and the rest of the body. Caring for your mental health is just as important. And with telehealth options that let you see a mental health professional from your home, it’s more convenient than ever. “The increased availability and acceptance of telehealth might be one of the few positive changes to come out of the [COVID-19] pandemic,” says Amy Walters, PhD, a clinical health psychologist and the director of Behavioral Health Services for St. Luke's Humphreys Diabetes Center. There are very good reasons to establish care with a mental [...]

Exercise for Both Physical and Mental Health

May 2nd, 2022|

It is well known that exercise is important to maintain physical health, but new studies have shown that the benefits of exercise extend to mental health as well. Researchers looked at 15 existing studies that contain data on exercise and depression and have found a correlation between depression risk and physical activity. Even when someone wasn’t exercising as intensely or as often as advised by the US Department of Health and Human Services, there were still significant mental health benefits. The 15 studies used, which included over 191,000 participants total, found that people who did half the recommended amount of physical activity had an 18% lower risk of depression, and people who did the full [...]

DPC’s State Advocacy Efforts Flourish with Elevated Voice of DPC Patient Ambassadors

April 25th, 2022|

Image: Medigap champion Kentucky State Rep. Tom Burch and Elizabeth Lively, DPC Eastern Region Advocacy Director By Kelly Goss, J.D., LL.M., Western Region Advocacy Director and Elizabeth Lively, Eastern Region Advocacy Director, Dialysis Patient Citizens (DPC) It’s been a busy start in 2022 for DPC’s state advocacy efforts. Many states are holding shorter legislative sessions due to the upcoming primary elections, and several bills impacting dialysis patients have been introduced and are moving quickly through the legislative process. Legislation to expand Medigap access has been introduced in Arizona, Kentucky, Louisiana, Maryland, Nebraska, New Jersey, Rhode Island, Vermont, and Wisconsin. Improving access to affordable Medicare Supplement (Medigap) plans is a top policy priority for DPC, and [...]

Falling by the Wayside? Falls Prevention in Dialysis

April 25th, 2022|

By Laura Plantinga, PhD, Bernard Jaar, MD, MPH, and C. Barrett Bowling, MD, MSPH Why are dialysis patients at particular risk for falls? Studies show that approximately one-quarter of dialysis patients fall every year, meaning that they are about three times more likely to fall in any given year, compared to the general population. While older age certainly plays a role, there are several other factors that put dialysis patients — regardless of age — at higher risk for falls. In fact, most falls probably result from a combination of factors, usually a combination of long-term “predisposing” risk factors and short-term “precipitating” factors. For dialysis patients, predisposing factors include health conditions like nerve [...]

The Courage to Self-Cannulate – Taking Control Means Less Pain, More Independence

April 25th, 2022|

By Michelle Carver, Vice President Clinical Service Initiatives at Fresenius Kidney Care If the idea of self-cannulating every time you dialyze seems impossible, you are not alone. Many people fear needles, especially the large ones used for dialysis. But trust me, when you learn to do it, you’ll wonder why you ever doubted yourself. It gives you control, may make your access site last longer and, believe it or not, hurt less. One of my dialysis patients compared it to putting a cotton-tipped swab in your ear – would you rather do it yourself or have someone else do it? Only you – not your care provider – can feel both ends of [...]

To Change or Not to Change?

April 25th, 2022|

By Dr. Stacy Ogbeide, Board Certified Clinical Health Psychologist www.stacyogbeide.com “Why is change so hard?” I hear this statement often from the patients I see in primary care. From taking a medication as prescribed to starting an exercise program – change is hard. Having a chronic health condition like Chronic Kidney Disease (CKD) can be difficult because, like many other chronic health conditions, CKD is heavily influenced by lifestyle and behavior modifications. What is a person to do? “I just need to do it.” “I will change when I want to change.” “I will start next week.” “I want to start that walking plan, but it hurts when I move so I stopped [...]

Wellness and Mental Health While Living with Rare Disease

April 25th, 2022|

  By Maya Doyle, MSW, PhD Cystinosis is a rare lysosomal storage disorder (1) that is typically diagnosed in childhood and typically results in kidney failure and progression to dialysis and/or kidney transplant. In the United States, a disease is considered rare if it is affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are approximately 7,000 rare diseases affecting between 25 and 30 million Americans – this means 1 in 10 people may be affected by a rare condition (2). The experience of a rare condition can be very isolating because of the lengthy time to get a diagnosis, the lower number of people with a specific [...]

My Experience as a Kidney Patient in CKD, Dialysis, and Transplant

April 25th, 2022|

By Orlando A. Torres After a 30-year battle with chronic kidney disease (CKD), in 2016 I had Stage Five kidney failure. This was the end of a three-decade battle which took countless hours of treatment. For years, I had been followed medically for CKD, having a special test done monthly and eating a special diet. As a CKD patient, my condition affected other organs in my body. The number of regular activities I could do also declined, but I never quit and refused to accept those limitations. I never let CKD limit what I did. I think it is important to try to work through the potential limitations of CKD to have a [...]

Living with Chronic Illness and Bipolar: A Story of Resilience

April 25th, 2022|

By Ashley Abedini I opened my eyes to find myself lying on a hospital bed. This was not exactly a new experience for me; I have a chronic illness called Cystinosis, a metabolic disorder that has led to health issues, most notably kidney failure. As a result of this, I had to go on dialysis for about a year, leading to frequent hospital stays. I was diagnosed at just six months, so it is something that has been a pivotal part of my life. The hospital bed, cold blank walls, and countless nurses were a familiar sight. This hospitalization was quite different though. I signed myself in that night for what I would [...]

How to Move Out of Loneliness and Isolation

April 25th, 2022|

By Rebekah Palmer Oftentimes, people whose bodies live with rare diseases and chronic illness are not only separated from their peers and society, but feel separate from their peers and society. This is especially true regarding peers who are considered able-bodied, as well as a society that is inherently ableist. People who do not live with chronic illness do not always know the existence that is lived regularly with hospital and clinic visits, and the consumption of treatment and medications. It can be what we see and hear on media and online when it comes to how disabled and rare populations are spoken about by society. It can even be aspects of our [...]

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