May CKD Insider Newsletter - Welcome!
Welcome to the Chronic Kidney Disease Newsletter. If you are person with chronic kidney disease (CKD) on dialysis or helping care for someone who is, this newsletter was created for you! 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 or in the near future in consultation with your physician.
In this month’s CKD Insider: COVID-19 resources, latest FDA approved medications,evaluation of kidney transplants,new gout management guidelines and getting outside with virtual reality tours!
The American Kidney Foundation (AKF) has created a Coronavirus Emergency Fund to help low-income kidney dialysis and transplant patients who are affected by the COVID-19 pandemic and are having financial difficulties. The money from this grant will help pay for transportation, food medication and treatment essentials. If you are in need of assistance please apply here or speak with your social worker or transplant coordinator.
If you are able to donate to help these patients during this challenging time please submit your donation to here. 100% of donations to the AKF Coronavirus Emergency Fund will be used to assist low-income dialysis and transplant patients who are affected by the COVID-19 pandemic.
Professional Organizations such as the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) continue to push forward to ensure CKD patients have the best protection from COVID-19 and the associated resources available as states re-open. Read their open letter here. You can help by supporting the NKF petition to protect kidney patients as states re-open. The petition and associated information for review are located here.
Also check out the NKF COVID-19 outbreak information page.
Fun Tip of the Day! A break from the everyday!
If you have been feeling the need to see something other than your four walls or local neighborhood during our global pause check out some of these virtual reality tours that can transport you to pretty much anywhere in the world you want to go! Visit different cities and museums from around the world, explore mountain tops, beaches, and amusement parks all from the comfort of your living room!
Visit Japan 360 VR Video Take a tour of Ireland's Giant's Causeway See the Aurora Borealis - Northern's Lights Live! Take tours of 30 UNESCO World Heritage Sites Take a walk around Mykonos island in Greece as though you were there! and many more.. check out thrillist or do an internet search for more ideas!
New FDA Approved Medications, Guidelines, and Test for Kidney Rejection
What it is: LOKELMA® is approved by the FDA to treat hyperkalemia (high potassium in the blood) in patients with end-stage renal disease on chronic hemodialysis. Previously Lokelma did not have dosing established for CKD patients on hemodialysis. Why it’s important: If you have been trying to manage your potassium levels with diet by avoiding foods high in potassium such as bananas, oranges etc, and this hasn’t worked effectively, you and your nephrologist now have another option for treatment. As you know potassium is important for your heart, nerves and muscles to work properly but too much potassium in your blood can be dangerous and lead to heart problems. A new medication can be considered a new tool in you and your nephrologists stay healthy tool box to help you live your best life! References:
What it is: Triferic AVNU® is FDA approved for the replacement of iron to maintain hemoglobin in adult patients with hemodialysis-dependent chronic kidney disease. Why it’s important: Maintaining hemoglobin (Hgb) levels within a safe range has long been known to be a critical part of the health plan for CKD patients on dialysis, too low or too high Hgb levels can be dangerous. If you or a family member receive hemodialysis treatment at a center that does not use liquid bicarbonate for dialysis, you might not have heard of the predecessor product Dialysate Triferic, which is the original formulation and requires liquid bicarbonate for administration to a patient via the dialysate. The new direct intravenous (IV) formulation, Triferic AVNU, makes this treatment available to the broader community as it doesn’t need to use a bicarbonate delivery method, which means that more clinics and centers can use it for iron maintenance therapy. So, if you haven’t heard of it mentioned as a treatment option you can ask your nephrologist to learn more about its availability to help maintain your hemoglobin levels.
Please note the following: · This formulation has not been evaluated for peritoneal or in home hemodialysis patients yet. · Triferic AVNU® will be made commercially available following completion of evaluation programs in clinics.
What’s the latest: A new urine based diagnostic assay for early detection of acute rejection in adults and children following kidney transplant. Developed by and administered as a lab developed test by the University of California at San Francisco (UCSF), with future plans to launch this as the first noninvasive commercial test for detecting kidney rejection via the UCSF spinoff company NephroSant. Why it’s important: If you or your family member have undergone a kidney transplant surgery or are about to, following your surgery the transplant team will perform regular tests to evaluate if your body is rejecting the kidney and how it is functioning. This new urine based test could make this process simpler for you (without the need for needles) and has the potential to eliminate the need for an invasive kidney biopsy.
What’s the latest: New recommendations were recently released from the American College of Rheumatology (ACR) for the management of gout. These recommendations provide updated guidance for physicians including best practices for treatment management, medication and lifestyle strategies for patients with gout and take into consideration moderate to severe CKD patients. Why it’s important: For anyone who has experienced the pain of gout, which is caused by accumulation of urate crystals in your joints, these new guidelines can provide your physician with new treatment options, medication and lifestyle recommendations that take into consideration CKD. If your physician has not mentioned this, you can read and share the ACR Guideline for Management of Gout here.
Looking to the Future: Read reviews of the latest CKD research
What's the latest: Photoacoustic (PA) imaging, a new non-invasive method to visualize fibrosis damage in donor kidneys before transplantation by evaluating collagen distribution as an indicator of damage. The preliminary data from tests on mouse, pig and human kidney samples ex-vivo (outside the body mimicking the transplantation situation) have been promising. Depending on how comprehensive the evaluation, kidney assessment can be completed between 1.5 -15 minutes. The researchers are planning to move this into clinical trials in Canada for a larger analysis.
Why it’s important: If you are on a transplant waitlist, this technology could improve your chances of getting a healthy long lasting kidney. PA imaging can help improve a clinicians ability to match the donor kidney quality with the receiving patient. Current methods used for assessing donor kidney functionality include scoring methods based on the donor’s medical history and/or an invasive needle biopsy which has risks associated with it (pain, bleeding, etc.) and only provides a small 1% view of the overall kidney health. PA imaging is able to visualize fibrosis or scarring on the outside renal cortex of the entire kidney which is where the capillaries responsible for blood filtration are located, and any damage in that location can have a major impact on kidney function. The more information physicians have to make kidney transplant matching decisions the better the chances of not having to repeat surgeries!
References: 1. https://insight.jci.org/articles/view/136995 2. Kidney Donor Profile Index (KDPI) Guide for Clinicians 3. https://www.niddk.nih.gov/health-information/diagnostic-tests/kidney-biopsy 4. https://www.medimaging.net/general-imaging/articles/294782287/photoacoustic-imaging-visualizes-donor-kidney-scarring.html
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