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: AAKP Tips on traveling, NKF Podcast & Peers, ASN Kidney Week Recap, FDA Prolia notice, Otsuka IgAN trial, NIH T1D study and your Fun Tip of the Day!
News from Kidney Organizations
AAKP webinar: Tips on how to travel safely during COVID-19 The American Association of Kidney Patients is hosting this educational webinar with Dr. Jeffrey Nemhauser from the Centers for Disease Control and Prevention (CDC). He will share the latest updates on COVID variants and travel guidance and provides some best practices for how to continue to travel safely. December 15th, 3:00- 4:00 pm EST Register here.
NKF Podcast: Hot Topics in Kidney Health The National Kidney Foundation (NKF) hosts a podcast called Hot Topics in Kidney Health for kidney patients, their family members and care partners, living donors, or anyone else interested in kidney health. You can hear it on Spotify, Apple Podcasts, Stitcher, or directly on the NKF website. Episodes are about 30 minutes in length. The latest episode covered information on flu vaccines in 2022 for those with kidney disease. Previous episodes have covered topics such as changes to Medicare coverage for immunosuppressive drugs and post-transplant diet recommendations.
ASN Kidney Week Conference Recap available online. The annual ASN Kidney Week took place on November 3rd- 6th and featured new treatments, research, and technology aimed at treating kidney disease. Content from the conference will remain available online until December 21st. You can help determine the content and events for the 2023 Kidney Week! Submit your session suggestions by December 14th here.
NKF Peers Support systems are important for those navigating kidney disease; if you’ve recently been diagnosed with kidney disease, are starting dialysis, or are considering transplantation, you likely have many questions. NKF Peers is a peer mentoring program for kidney patients, care partners, and living kidney donors. As part of the program, participants are connected by phone with trained mentors who have been there themselves and can share their experiences with dialysis, transplant, or living kidney donation. Learn more or sign up to get matched with a peer here.
For people with Type 1 Diabetes (T1D) that are NOT on dialysis Learn the importance of personalized kidney screening. NIH News Release: NIH-funded study finds personalized kidney screening for people with type 1 diabetes could detect chronic kidney disease earlier. Read full referenced article here.
Your Fun Tip of the Day!
Fun Holiday ideas!
December is a month full of holidays, more than you might even realize or regularly celebrate. You can make a fun event of almost any holiday. Check out all the holidays to choose from here. It can be fun to switch it up a bit, and join someone else's holiday celebrations or just up your game with your own holiday traditions!
To get you started below are some ideas to help you feel like a kid again!:
Go sledding or ice skating and enjoy being outside in the fresh air
Go to a lights festival and take it all in with a smile
Take a walk (or drive) in a nearby neighborhood and enjoy the holiday decorations
Create a fun holiday photoshoot with friends and family that you will always remember
Attend a tree lighting ceremony and grab some holiday cider along the way
Take time to appreciate a friend you haven’t spoken to in awhile
Help decorate a neighbor’s house or apartment just for the fun of it
Check out your local department stores and get inspired by their holiday displays
Celebrate Wright Brothers Day (Dec. 17th) with a visit to an aviation museum
Do anything you haven't done in awhile that you think will be fun!
One Track Health Mobile Application Available for iPhone
The One Track Health Mobile Phone Application is free and available on the apple store
View Blood Test Results with Simple Color Coding System
Track Key Test Results with multiple views*
Stay up to date with the latest CKD news
* Included in the app are five default blood tests (Albumin, Calcium, Hemoglobin, Phosphorus and Potassium) that are regularly monitored for people with chronic kidney disease on dialysis with the standard recommended blood test result ranges** to make it easier for you and your care partner to keep track of your health goals.
** References used to determine the default test type ranges are included in The Blood Test Results Help Guide. We provide basic reference ranges for your educational purposes and recommend that you consult with your licensed healthcare provider/nephrologist for your specific reference ranges. The OneTrackHealth mobile and web app is customizable, you can add new tests and change the default tests reference ranges via the test edit tool. We recommend consulting with your physician to determine the appropriate ranges for you when adding or editing test result ranges.
FDA investigation for people on dialysis taking Prolia (denosumab) for osteoporosis
What it is: FDA Drug Safety Communication.
"The U.S. Food and Drug Administration (FDA) is investigating the risk of severe hypocalcemia with serious outcomes, including hospitalization and death, in patients with advanced kidney disease on dialysis treated with the osteoporosis medicine Prolia (denosumab). The FDA's review of interim results from an ongoing safety study of Prolia suggests an increased risk of hypocalcemia, or low calcium levels in the blood, in patients with advanced kidney disease. Preliminary results from a separate internal FDA study further investigating hypocalcemia in dialysis patients treated with Prolia show a substantial risk with serious outcomes, including hospitalization and death.
Because of the frequency and seriousness of these risks, the FDA is alerting health care professionals and patients about them and that the FDA is continuing to evaluate this potential safety issue with Prolia use in patients with advanced kidney disease, particularly those on dialysis. The FDA will communicate their final conclusions and recommendations when we have completed our review or have more information to share."
Why it's important: Per FDA: "Patients should not stop Prolia treatment without first consulting your health care professional, as stopping may worsen your bone condition. Talk to your health care professional about any concerns you may have, including possible alternative treatments. Tell your health care professional if you experience any symptoms of low blood calcium levels such as unusual tingling or numbness in the hands, arms, legs, or feet; painful muscle spasms or cramps; voice box or lung spasms causing difficulty breathing; vomiting; seizures; or irregular heart rhythm."
Read the full report: FDA investigating risk of severe hypocalcemia in patients on dialysis receiving osteoporosis medicine Prolia (denosumab). This may necessitate increased blood calcium monitoring.
Investigational study for treatment of IgAN is enrolling people now.
What it is: A Trial of Sibeprenlimab for Adults with IgA Nephropathy (IgAN) to study the effectiveness and safety of sibeprenlimab, an investigational drug for the treatment of IgAN.
Otsuka Pharmaceutical Development and Commercialization, Inc andVisterra, Otsuka Group or Companies is enrolling people for this investigational trial. You can learn more here.
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