The Renal Support Network has published a podcast called Keep on Believing, featuring an interview with America’s Got Talent superstar and kidney transplant recipient (at age 4) Angelica Hale. Angelica advises, “Never give up and keep on dreaming. Keep on believing in yourself. No matter what you are going through, you can still achieve your dreams and reach your goals.” Find the podcast at https://www.rsnhope.org/kidneytalk/keep-on-believing/.
Home Dialysis Central has published a blog post on Traditional Dialysis vs. Transitional Care for Urgent Starts. Transitional Care for Urgent Starts (TCU) provides a gentler and more supportive introduction to dialysis for people whose kidneys fail with little warning, helping them get past the shock of a “sudden” change of just about everything in their life, and helping them make informed decisions about treatment modality. Of course kidneys don’t fail suddenly, but sometimes it seems that way to the person whose kidneys have failed. Find the post at https://homedialysis.org/news-and-research/blog/330-traditional-dialysis-vs-transitional-care-for-urgent-starts.
The CNSW OR-SW WA Chapter will host a half-day Fall Clinical Nephrology Social Work Meeting on November 6, 2019 in Portland OR. Speakers will present on disability rights, the Senior Loneliness Line, and the 2-1-1 Helpline. There will be no CEUs offered for this meeting, but lunch is included, the speakers are excellent, and the networking opportunity is priceless. Find details, agenda, and registration information at https://s3-us-west-2.amazonaws.com/nwrn.org/files/CNSW/CNSW1119.pdf.
The Medical Education Institute has written a blog post on Social Security Policies Related to Medicare: A Primer. It’s really complicated, so it may be more appropriate for a Social Worker than a patient, but if the Primer is this complex, the Reality must be especially daunting – which makes a Primer all the more valuable. Find the Primer at https://homedialysis.org/news-and-research/blog/307-social-security-policies-related-to-medicare-a-primer.
Dialysis Patient Citizens will present a May 26, 2019 webinar and conference call on Relieving Pain through Laughter, aka “Joyology.” For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/DPC/DPCLaugh2019.pdf, and RSVP at https://www.dpcedcenter.org/.
MEI’s Home Dialysis Central blog has an interesting post on Laugh Out Load Hemodialysis, which Satellite Dialysis has been experimenting with. Among other things, the post describes the physiological benefits of laughter, including its positive impact on mood, pain, lungs, cardiovascular function, and immune response. Find the post at https://homedialysis.org/news-and-research/blog/305-laugh-out-loud-hemodialysis-lol-hd-improving-the-dialysis-experience-at-satellite-healthcare/. While the subject of the post is in-center dialysis, anyone with an internet connection and computer or smartphone who dialyzes at home can call up a million comedies to watch. See also https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/DPC/DPCLaugh2019.pdf for information on a May 26, 2019 webinar on Pain Relief through Laughter.
The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals. This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.
SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:
- You are 18 yrs of age or older
- You are one of the following:
- A patient with any major form of glomerular disease*, at any stage of development**
- A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
- A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
- A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
- You work in an industry that deals with glomerular disease
- *Major forms of glomerular disease include:
- ANCA vasculitis
- Anti-GBM disease
- Anti-glomerular basement membrane disease
- Anti-neutrophil cytoplasmic antibody associated vasculitis
- Complement-mediated glomerulopathy
- Focal segmental glomerulosclerosis
- Goodpasture’s disease
- Goodpasture syndrome
- Henoch-Schoenlein purpura
- IgA nephropathy
- IgA vasculitis
- Lupus nephritis
- Membranoproliferative glomerulonephritis
- Membranous nephropathy
- Minimal change disease
- **Stages of kidney disease development include:
- Normal kidney function
- Chronic kidney disease
- ESRD, dialysis, or transplant
Answers will be completely anonymous and analyzed only in combination with other responses. Find the survey at https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_djzDXYqzIQ0dMGN. You will be asked for your name and email address so SONG-GD can send you a short follow-up survey.