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September 2023 CKD Insider Newsletter

Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician.

In this month’s CKD Insider:


News from Kidney Organizations

Save the Date for Renal Support Network’s 2023 Hope Week

RSN’s 2023 Hope Week, the annual patient education meeting, will take place October 18 – 22, 2023. Sessions include information on managing blood pressure and anemia, tips to bolster our mental health, information about transplantation and living donation, nutrition advice and recipes, and much more. The event is entirely free to attend, but registration is required.

Date: October 18th -22nd Learn more and register here.


Donor Connect Peers Program connects potential organ donors with previous living donors

The National Kidney Foundation (NKF) & National Kidney Registry marked the 100th successful kidney transplant in the last year, made possible through the Donor Connect Peers Program.

The program pairs potential living donors with living donor peer mentors who have gone through the screening, donation, and recovery process. Learn more about this program and becoming a living donor here.


KDIGO publishes Controversies Conference report on novel anemia therapies

Kidney Disease: Improving Global Outcomes (KDIGO) published conclusions from its Controversies Conference related to novel anemia therapies for chronic kidney disease. This conference focused on a new class of agents called hypoxia-inducible factor-prolyl hydroxylase inhibitors or HIF-PHIs. The report includes both points of consensus and disagreement among kidney providers and highlights the 16 phase 3 clinical trials that have been conducted to evaluate HIF-PHIs for CKD.

Over a decade ago, KDIGO published guidelines for the diagnosis, treatment, and management of kidney disease. However, in the last 10 years, the therapeutic landscape has changed significantly, and this report highlights that advancement with regard to treating anemia in CKD patients. The report can be read here. Speak with your nephrologist to learn more.


Advocacy Win: new organ procurement transplant law is “game-changer”

Kevin Longino, the CEO of the National Kidney Foundation (NKF), called the Securing U.S. Organ Procurement and Transplantation Network (OPTN) Act that was signed into law this month a “game-changer". He emphasized that it will save lives and “help improve the transplant system by promoting innovation, transparency, and accountability across the system. It will improve equity and access to transplantation for all Americans. Modernize the technology that matches donors to recipients and create a more efficient system to maximize the number of organs that can be transplanted.”

You can watch his reaction or read the full statement from Kevin Longino on the signing of the OPTN Act into law.


Your Fun Tip of the Day!

Power of Changing Your Environment

Depending on where you live you might be in that in between season where the hot days of summer are gone and rainy days have become a regular occurrence. If outdoor activities are no longer an option or if you're just looking for new ideas, check out the suggestions below. Changing your environment can help brighten your day!

There are many types of experiences that can stimulate your senses and make you feel like your taking a virtual breath of fresh air even when you are indoors. Below is a list of ideas to inspire you, and remember you can often find a virtual version to immerse yourself while on dialysis.

  • Visit your local aquarium or an indoor garden and atrium to feel connected to nature

  • Take a museum tour and learn something new (natural history, art, space, science & or an ice cream museum!)

  • Spend time in your local bookstore or library and enjoy taking the time to find new topics that interest you. If your prefer e-books, you can browse what’s available at your local library online for free and download favorites right away.

  • Join immersive experiences (Think Van Gogh, virtual reality arcade, Escape Rooms)


FDA grants clearance for NxStage VersiHD with GuideMe software

What it is: This month, NxStage® from Fresenius Medical Care received FDA 510(k) clearance for the new Versi®HD with GuideMe software. The VersiHD with GuideMe software, which uses on-screen, step-by-step instructions with pictures, offers a self-guided interface that streamlines hemodialysis for patients, caregivers, and healthcare providers.

Why it’s important: The GuideMe interface is designed to make it easier to learn and retain training information, with the goal of improving your confidence and reducing errors. If you already have a VersiHD machine for your home hemodialysis, it can be upgraded to include the GuideMe software via cycler swapout.


Kidney-friendly fall recipes

This recipe catalog from the American Kidney Fund (AKF) can be filtered to ensure it meets your nutritional needs. You can select phosphorus, potassium, protein, and sodium levels to filter the recipes. You can also filter for other dietary needs, such as gluten-free or vegetarian.

These fall recipes, along with many others on the website, are low in phosphorus and sodium:


For people with CKD NOT on dialysis: FDA approves Jardiance for adults with chronic kidney disease

What it is: Jardiance®(empagliflozin) developed from the Boehringer Ingelheim and Eli Lilly and Company Alliance is a sodium-glucose cotransporter 2 (SGLT2) inhibitor that was previously approved to treat type 2 diabetes and to reduce the risk of cardiovascular death in those with heart failure. This month, the FDA approved Jardiance (empagliflozin) 10 mg tablets for use to reduce the risk of kidney disease progression and cardiovascular death in adults with CKD.

Why it’s important: The EMPA-KIDNEY trial that tested Jardiance for those with CKD, with or without type 2 diabetes, showed that the drug significantly reduced the risk of kidney disease progression as well as the risk of cardiovascular death. Additionally, Jardiance decreased first and recurrent hospitalizations. This approval provides a new option for patients in the treatment and management of CKD and type 2 diabetes. Check with your nephrologist to see if this is an option for you or your family member.


In Memoriam for Nieltje Gedney

Nieltje Gedney, Executive Director of Home Dialyzors United (HDU) passed away September 21st. Nieltje was a passionate and powerful advocate for people on dialysis, particularly those on home dialysis. She continually raised the bar on her advocacy efforts and was a positive force for good in the community, always open to helping others.

I experienced this first hand, soon after being awarded the Kidney X Prize for the OneTrackHealth app I reached out to Nieltje, and she was immediately positive and supportive about the app offering constructive help and connection to the wider community; I saw and heard her do the same for many people looking to help the dialysis community over the years.

For those of you who did not know Nieltje, she made a difference for you in ways you might not realize. She moved projects forward with companies and researchers working on solutions to help people on dialysis, and made sure the patient voice was heard and incorporated into development efforts. She continually looked for new ways to educate and support the home dialysis community and was very open with her own journey allowing others to do the same in a safe space. The week before she passed, she was co-hosting the Dialysis at Home 2023: Community Event with her usual positive energetic focused approach that we all came to expect from her.

She was an example for us all, her legacy lives on in all of us who do our best to support the dialysis community. She is missed and will not be forgotten. Please let’s all send our positive thoughts and condolences to her daughter and granddaughter and her closest friends as they navigate this time.



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