By Jane Bahk
All eyes were on 10-year-old Mason Patel. Nothing would start until he uttered those time-honored words.
“Play ball!” Mason called into the microphone, and the crowd erupted with cheers.
As this year’s Play Ball Kid, Mason represented organ donor recipients at the San Francisco Giants’ 24th Annual Organ Donor Awareness Day on Aug. 30, also known as Donate Life Day. Read the full story from Stanford Medicine Children’s Health.
Shawn M. Carter
Underrepresented groups with kidney disease face greater health care burdens due to psychological and structural factors, such as stigma and institutional racism, data show.
“Racial and ethnic minority groups in the United States are disproportionately affected by chronic kidney disease and progressive kidney failure, and face significantly more socioeconomic challenges,” Merav Shohet, PhD, of the department of anthropology, Boston University College & Graduate School of Arts and Sciences, and colleagues wrote. Read the full story in Healio.
By Shawn M. Carter
Psychological distress may be linked to poor self-management of chronic kidney disease, according to a recently published study of patients with CKD who were not on dialysis.
“Beginning with the diagnosis of chronic kidney disease (CKD) onward, patients are confronted with profound changes that require extensive emotional skills. An additional burden is adhering to disease self-management recommendations,” lead researcher Cinderella K. Cardol, PhD, of the health, medical and neuropsychology unit at Leiden University in The Netherlands, and colleagues wrote.
Read the full story in Healio.
What is going on?
Medicare coverage for post-transplant tests, such as CareDx’s AlloMap and AlloSure, is being reviewed. The transplant community now has the opportunity to share comments and letters on the importance of these tests and how restricting access to these tests could negatively impact patients and their post-transplant health.
Why does this matter to you?
AlloMap and AlloSure help detect issues, such as rejection, with transplants earlier than traditional testing, while also helping patients avoid invasive procedures like biopsies. These tests have been trusted by the transplant community for over 15 years for heart transplant recipients, over 5 years in kidney transplant recipients, and over 2 years in lung transplant recipients.
New proposed coverage for these tests is more restrictive. If these new restrictions are put in place, it could limit access to these important tests. This could prevent your care team from being able to order these blood tests to check on how your transplant is doing when they think it is needed.
How can you help?
The patient voice is powerful and deserves to be heard on this important issue! From now until September 23, 2023, you can send a comment or letter to the groups making these decisions, voicing your perspective on the importance of these tests and need for continued access.
While doing so in your own words is best, we have created the below prompts to help. To start your letter, select at least one of the prompts below that feels best for you and answer it in your own words. Be sure to include what kind of transplant you have had, a little bit about your own transplant story, and how non-invasive tests like AlloSure or AlloMap have impacted your post-transplant care.
Click here to learn more and start your letter!
By Denise Mann
MONDAY, Aug. 28, 2023 (HealthDay News) — Valance Sams Sr. believes that he has experienced “a miracle.”
Sams, now 46, underwent a triple organ transplant in the spring of 2023, making him one of fewer than 50 people in the United States to ever receive three new organs via transplantation. Read the full story in U.S. News & World Report.
By Veronia Giarla
Nolan and his uncle Jon are both tall and blonde, but they now have something more in common: The two have an unbreakable bond, thanks to a selfless —and lucky — gift that changed Nolan’s life forever.
The first year after Nolan was born, his primary care physician ran some blood work to try to explain Nolan’s slow weight gain, or “failure to thrive,” which can interfere with brain development and other developmental issues. Nolan’s mother remembers that, “Nolan’s pediatrician told us to get him to Boston Children’s Hospital immediately because his lab tests were concerning. We had no idea what that meant, but we knew Boston Children’s was where we’d find out.”
Read the full story from Boston Children’s Hospital.
By Julienne Jenkins
Nevaeh Quinn of Winnemucca, Nevada, got the thrill of a lifetime when she received the news that a generous, anonymous donor was gifting her tickets to see Taylor Swift at the Eras Tour concert. A social worker at Lucile Packard Children’s Hospital Stanford, Gianna Nasrah, LCSW, wanted to do something special for her.
Nevaeh is an amazing 14-year-old girl that has spent a lot of her life in medical settings,” Nasrah said. “She has recently been in and out of the hospital often, and I think my hope is that this gives her a sense of normalcy and rejuvenates her hope for the future.” Read the full story from Stanford Medicine Children’s Health.
By John Hackley
At 55, Buford area resident Jeff Hadley is in need of a kidney transplant from a genetic condition known as polycystic kidney disease that he was diagnosed with in his mid to late twenties.
Although he has been required to undergo dialysis treatments five days a week for the past year and half, he still works full-time at Lowe’s in Hillsboro. Read the full story in The Times-Gazette.
By Scott Buzby
Following SARS-CoV-2 infection, mitochondrial function remained impaired in the heart, liver and kidneys, despite observed recovery in the lungs, according to a human autopsy and animal tissue study.
“Upon SARS-CoV-2 infection of host cells, the viral copy number increases unchecked until the innate immune system is engaged, after which the viral copies progressively decline until the virus is eliminated,” Joseph Guarnieri, PhD, postdoctoral research fellow at the Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia, and colleagues wrote. Read the full article in Healio.
By David Warmflash, MD
Nearly 90,000 patients in the United States are waiting for a lifesaving kidney transplant, yet only about 25,000 kidney transplants were performed last year. Thousands die each year while they wait. Others are not suitable transplant candidates.
Half a million people are on dialysis, the only transplant alternative for those with kidney failure. This greatly impacts their work, relationships, and quality of life. Read the full story in Medscape.