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Wellness and Mental Health While Living with Rare Disease

2024-03-28T20:58:14-04:00April 25th, 2022|Categories: Lifestyle, Mental Health, Physical Health, Stress Management, The Kidney Citizen, What Causes Kidney Disease|

  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 [...]

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

2024-03-28T20:58:16-04:00April 25th, 2022|Categories: Diagnosis of Kidney Disease, Dialysis, Home Hemodialysis, In-Center Hemodialysis, Kidney Transplant, Stages of Kidney Disease, The Kidney Citizen|

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 [...]

Living with Chronic Illness and Bipolar: A Story of Resilience

2024-03-28T20:58:19-04:00April 25th, 2022|Categories: Mental Health, The Kidney Citizen|

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 [...]

How to Move Out of Loneliness and Isolation

2024-03-28T20:58:20-04:00April 25th, 2022|Categories: Mental Health, Stress Management, The Kidney Citizen|

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 [...]

Depression and Dialysis – A Look at Two Potential Treatments

2024-03-28T20:58:39-04:00January 3rd, 2022|Categories: Dialysis, eNews, Medication, Mental Health, The Kidney Citizen|

It is not uncommon for patients receiving dialysis treatment to have depression, though it can be hard to distinguish the symptoms of depression from those of kidney failure. Trouble sleeping, poor appetite, headaches, and fatigue are all symptoms of both conditions, leaving dialysis patients to wonder not only if they have depression, but if treatment would help to improve the symptoms they are feeling. Talking to your kidney care team is a great first step to figuring out who you should talk to about whether you have depression, along with figuring out potential treatment options. Though there are many ways [...]

Research Report Finds Minimal costs to enacting Jack Reynolds Memorial Medigap Expansion Act

2024-03-28T20:58:40-04:00December 17th, 2021|Categories: Costs for Treatment, The Kidney Citizen|

By Jackson Williams, DPC Vice President of Public Policy A research report commissioned by DPC has found that passage of the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) would add only minimal costs to the federal treasury and to seniors’ Medigap premiums. H.R. 1676  would require insurers to make Medigap plans available to End-Stage Renal Disease (ESRD) patients under the age of 65. The report from Health Management Associates (HMA) calculated the costs associated with changing the law. Under current federal law, insurers are not required to offer Medicare Supplemental Insurance (also called Medigap) plans to patients under 65 years of age. While Medicare pays for roughly 80 [...]

DPC’s New Report Card on Medigap Coverage Helps ESRD Patients Understand their Medicare Supplemental Insurance Options

2024-03-28T20:58:41-04:00December 17th, 2021|Categories: Additional Resources, Costs for Treatment, The Kidney Citizen|

By Kelly Goss, J.D., LL.M., Western Region Advocacy Director If you’re a dialysis patient under age 65 looking to purchase a Medigap plan, DPC’s new interactive Medigap Report Card will help you understand the availability of Medigap coverage in your state. Medicare Supplemental Insurance, or Medigap, is provided by private insurance companies to help Medicare enrollees cover their out-of-pocket “gap” costs – such as copays, coinsurance, and deductibles – not covered by Original Medicare. Providing accessible and affordable Medigap coverage is critical to ensuring patients with End Stage Renal Disease (ESRD) can fully cover the cost of their care, since Medicare [...]

Chronic Kidney Disease and Hyperkalemia: What You Need to Know About High Potassium!

2024-03-28T20:58:42-04:00December 17th, 2021|Categories: Nutrition, Stages of Kidney Disease, The Kidney Citizen|

By Sue Hellie The challenges faced this past year have redefined what it means to live with chronic kidney disease (CKD). People living with kidney disease and other severe chronic conditions are at higher risk for more severe illness, and they’ve had to take extra precautions to ensure their safety and wellbeing. However, this past year has presented many people with the opportunity to educate themselves about their health and potential associated conditions that come with living with CKD. One condition that is less understood by many living with CKD is hyperkalemia. What is hyperkalemia? Hyperkalemia is a condition some people [...]

Be Ready for Weather-Related Emergencies!

2024-03-28T20:58:43-04:00December 17th, 2021|Categories: Additional Resources, Dialysis, Physical Health, The Kidney Citizen|

By Mike Guffey, DPC Board Member It is critically important for dialysis patients to be prepared for weather emergencies, especially as we head into the hurricane and winter weather seasons. Patients should have an emergency checklist and a “go” kit with emergency supplies. www.ready.gov is a good go-to site with checklists and contact cards to help your family be prepared. You should gather the information well in advance of any incidents, but it is helpful to review them at the start of each severe weather season. Maintain the kit in a sturdy plastic container and rotate supplies on a [...]

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