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Coping with Chronic Illness During COVID-19: How to Live Well in the Context of Stress

September 9th, 2020|

By Elizabeth Steinberg Christofferson, PhD An increasingly vital aspect of the COVID-19 pandemic is how the pandemic impacts our mental health, overall well-being, and how we cope with the pandemic, especially as it continues on for a longer period than we may have anticipated or hoped. This article provides psychoeducation on the connection between stress, chronic illness, and COVID-19, tips for managing anxiety related to these stressors, and resources for further support. Stress During COVID-19 and Symptoms to Look Out for COVID-19 adds to already present stress that impacts patients and families on many levels in terms of their medical and physical health, emotional and mental health, family, school, and social lives. Having a chronic [...]

Supporting Your Health and Wellbeing Before, During, and After Kidney Transplant

September 3rd, 2020|

By Elizabeth Steinberg Christofferson, PhD and Leah Grande, MA Preparing for and receiving a kidney transplant, especially during the COVID-19 pandemic, can be an uncertain and overwhelming process. This article discusses tips to promote positive mental and physical health for yourself or your loved ones. Preparing for a Transplant There are many different emotions associated with deciding to go on the transplant list, and all of these feelings are normal and valid! You may feel excited about the potential for improved health and energy, fewer restrictions on what you can eat and drink (although you still want to eat a heart-healthy diet!), more time in your day, and changes in quality of life.7 Many [...]

Kidney Patients and Coronavirus: What Have We Learned?

September 1st, 2020|

By Alan S. Kliger, MD The COVID-19 pandemic has changed life for virtually everyone on the planet. For most of this year, we have all gone through many troubling emotions: fear, disbelief, anxiety, anger, mistrust, cynicism. We also have learned so much, and have looked to the future for trust, hope, anticipation, and most of all the ability to get on with life beyond face masks, social distancing, closed schools and closed businesses, and to a time we don’t have to worry every time someone walks toward us: might they be the one who infects me. In the midst of such upheaval, people with chronic kidney disease, including those who receive dialysis treatment or who [...]

Participating in a Clinical Trial

August 21st, 2020|

New medical treatments and products are continually being developed for people living with kidney disease. Part of the development process for high quality, scientific, and safe options is through research to test the treatment or product before it becomes available on the market. This phase of research is called a clinical trial or a clinical research project. People can volunteer to be part of a clinical trial if they meet the specific requirements for the study. You might consider participating in the research process for many reasons including if it has a personal meaning for you or if you want to give back in an effort to help other patients. Some clinical trials reimburse patients [...]

Dialysis Patients Should Continue to Prioritize Their Health

August 11th, 2020|

As officials across the country make decisions on how to safely reopen cities amid a global pandemic, people with End-Stage Renal Disease (ESRD) must remain vigilant about taking precautions to lower their risk for COVID-19 infection. COVID-19 cases and hospitalizations increased significantly among ESRD patients from May 16 to June 20, as reported by the Centers for Medicare & Medicaid Services. The number of kidney disease patients who were diagnosed reached 3,818 per 100,000 people, while hospitalizations were reported at 1,911 per 100,000 people. These rates are more than double that of the general population during that same time frame, demonstrating how vulnerable kidney patients may be as well as the need for continued vigilance. [...]

Guide for Submitting Emergency Grants

August 5th, 2020|

Emergency grants can help cover costs for transportation, medication, rent and food when someone is sick. This one-page guide will help you better understand the submission process with a summary of searching, preparing, applying and tracking grants. Included is a list of documents you may be asked to submit with your grant request. Reach out to your social worker if you need help. Check out the guide.

12 Tips to Cope with Chronic Disease

July 20th, 2020|

By Rachel Fintzy Woods, MA, MFT So many aspects of life are beyond our control. When the challenges of managing an illness such as chronic kidney disease are added to our plate, we can feel overwhelmed. Emotions such as anger, confusion, fear and sadness are common and natural, especially at the outset of our journey with illness. It can seem as if our world has been turned upside down. Yet we do have some say in how we deal with the cards we’ve been dealt, including our medical condition and life itself. We alone are responsible for our actions and our attitudes—the word “responsibility” refers to our ability to respond, after all. We can expand [...]

Public Health Service Guidelines on Organ Donation for HIV, HBV, HCV and Transplant Recipient Monitoring

July 15th, 2020|

The U.S. Public Health Service (PHS) recently released the PHS Guideline for Solid Organ Donor Assessment for Human Immunodeficiency Virus (HIV), Hepatitis B Virus (HBV), and Hepatitis C Virus (HCV) Infection and Transplant Recipient Monitoring. This document updates existing PHS guidance pertaining to solid organ donors and recipients and testing for HIV, HBV, and HCV in addition to informed consent and appropriately communicating the risk of disease transmission to transplant candidates. The revised guideline reflects substantial advances in testing technology and treatment that improve patient safety. Key things for you to know: Risk of infection due to transplant is very low. Advances in highly accurate testing have made it easier for healthcare providers to quickly [...]

Understanding Chronic Pain and Depression

July 13th, 2020|

How Chronic Pain Can Impact Your Mental Health When You Have Kidney Disease By Hannah Calkins Chronic pain and depression are closely linked and because as many as 60 percent of hemodialysis patients report moderate to severe chronic pain, it’s likely that many of them have experienced depression—or are at risk for it. But it may not look or feel the way you expect, according to psychologist Robert Kerns, PhD. “Depression among people with chronic pain may not be experienced as profound sadness,” says Kerns, a professor of psychiatry, neurology and psychology at Yale University. “Other symptoms may be more likely to be present, including loss of interest or engagement in activities you normally enjoy, [...]

Care Coordination Fixes One of the Biggest Flaws in the American Health Care System

July 6th, 2020|

By Gloria Rohrer, DPC Patient Ambassador As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive proper care. When seeing so many different doctors at various clinics and hospitals, patients like me can suffer adverse effects if all our treatments are not designed to address our full medical history, rather than a single disease. This can be because of a lack of communication between our care [...]

Identifying Sepsis Risk and Symptoms

June 29th, 2020|

By Marijke Vroomen Durning, RN People who live with kidney disease are more susceptible to contracting infections than the general public. A weakened immune system, frequent hospital or clinical visits/stays, and possible points of entry for infection (catheters, ports, etc.) all contribute to this increased risk. Unfortunately, some of these infections can lead to sepsis, which can be life altering, even fatal for thousands of people. Sepsis is your body’s inflammatory response to an infection. It can be any type of infection—viral, as with influenza; bacterial, as with a urinary tract infection (UTI); even fungal or parasitic. No one knows why two people may get the same infection, but one may develop sepsis while the [...]

Is a Transplant Right for Me?

June 26th, 2020|

During this webinar You will learn about 1) The risks vs benefits of a transplant, 2) The choice of a deceased vs living donor, 3) How to find a living donor, and 4) Tips from patients’ own transplant experiences.

4 Cereales integrales para incorporar en tu alimentación

June 22nd, 2020|

Por María Eugenia Rodríguez León, MS, RD, CSR, LND, Nutricionista Dietista Licenciada https://menutritionpr.com Una de las recomendaciones para llevar una alimentación saludable es que la mitad de los cereales y farináceos que comemos sean integrales. Se ha demostrado que los cereales y farináceos integrales ayudan en la prevención de algunas enfermedades (ej. diabetes, cáncer, alta presión y enfermedades cardiovasculares).1 Un grano integral tiene las tres partes originales de la semilla: salvado, germen y endospermo.2 Salvado: es la parte comestible del exterior de la semilla. Contiene antioxidantes, vitaminas del complejo B y fibra. Germen: es el embrión de la semilla. Es la parte que tiene el potencial de convertirse en una planta nueva. Contiene vitaminas [...]

4 Whole Grains to Add to Your Diet

June 22nd, 2020|

By María Eugenia Rodríguez León, MS, RD, CSR, LND, Registered Dietitian Nutritionist https://menutritionpr.com One of the recommendations given for following a healthy diet is choosing half of your daily grains as whole grains. Whole grains can help in preventing some diseases (e.g., diabetes, cancer, high blood pressure and heart disease).1 A whole grain has the three original parts of the seed: bran, germ and endosperm.2 Bran is the edible part surrounding the seed. It contains antioxidants, B vitamins and fiber. Germ is the seed embryo. It is the part that has the potential to become a new plant. It contains B vitamins, protein, minerals and healthy fats. Endosperm is the germ's food. It is [...]

Spoon-Saving Strategies

June 15th, 2020|

By Sara Naveed Raise your hand if getting out of bed feels like an accomplishment to you, if you have ever felt the need to nap after taking a shower or if being tired feels like it's a part of your personality now! How about constantly finding yourself in a push/crash cycle—pushing way past your limit one day and then paying the price for it in the form of heightened symptoms and having to rest several days in order to recover? Don't worry—you're not the only one! We currently live in an era where we are constantly fed the narrative that our self-worth is based on our productivity. So it's only natural to want to [...]

Managing Chronic Pain in Dialysis Patients

June 8th, 2020|

By Amanda Nelli, MD and Padma Gulur, MD Pain is a complex symptom and a common concern for all patients with a chronic illness. In particular, end-stage renal disease (ESRD) poses unique challenges. It has been found that 37-50 percent of patients with ESRD on hemodialysis experience chronic pain, and more than 80 percent of these patients experience moderate to severe pain.1 Pain in dialysis patients often goes undertreated, which may be because it is often caused by multiple problems. The pain experienced in dialysis patients is often a combination of physical, social and psychological influences.2 There are multiple medical causes of pain in the dialysis population, including complications related to diabetes, underlying arthritis, [...]

Are You Scared or Anxious about COVID-19?

June 2nd, 2020|

Updated September 10, 2020 We are living in a time of uncertainty with the COVID-19 pandemic, which can lead to stress, fear, depression, and anxiety. We may feel overwhelmed at times and bored at other times. We may be at a loss for how to cope with social distancing, not seeing friends and family, and the possibility of getting sick. If you are a dialysis patient, receiving treatment either in-center or at home, your facility social worker is a great resource for you. Or, if you are a transplant patient, you can talk to your transplant social worker for support. You have people who can help you through this challenging time, either at your [...]

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