Category Archives: Treatment Planning

3/9 AAKP Transplant Patient Roundtable

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In conjunction with World Kidney Day, AAKP will present a three-hour online March 9, 2023 National Kidney Patient Consumer Roundtable on Timely Issues Impacting Kidney Transplant Patients, Drug Innovation, and Living Organ Donors. Key discussion topics will include

  • Covid-19: Ongoing Concerns for Immunosuppressed Kidney Transplant Patients as the National Public Health Emergency Ends on May 11th
  • Opportunities and Barriers for Accelerating Innovations in Transplant Therapies and Drugs
  • Issues Impacting Living Organ Donation and Living Donor Protections

Find details and the agenda at https://files.constantcontact.com/3ba3e021401/f2d112c3-de56-4faa-8ae0-fd067bfe70d6.pdf, and register at https://www.surveymonkey.com/r/AAKPRoundtable.

RSN Podcast on Paying for Treatment

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The Renal Support Network KidneyTalk program presents a recorded podcast on Paying for Dialysis or Transplant. Founder Lori Hartwell asks Beth Witten, LCSW, for an overview of her wealth of knowledge about the complexities of health insurance coverage of kidney disease. Find this podcast at https://www.rsnhope.org/kidneytalk/paying-for-dialysis-or-transplant/, and a catalog of past KidneyTalk recordings at https://www.rsnhope.org/kidneytalk-podcast-show-kidney-disease/.

UM-KECC Survey: Life Goals and Care Team

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The University of Michigan KECC is conducting an ESRD Patient Reported Outcomes Quality Initiative Project Patient Life Goals Study, and seeks dialysis patients at least 18 years old to answer a new Survey that asks about your individual life goals and your dialysis facility care team.  Life goals are personal goals that you think are important to achieve, such as having the ability to go to work, go to school, travel, or spend time with family.  The Study aims to improve the odds that your care team will consider your individual life goals in the treatment planning process.  Find an introductory letter and the Survey at https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=DT4N3P48AC.  There’s an easy-to-miss check box at the bottom of this page, which you have to check before the Survey questions appear.  The Survey doesn’t seem to specify an expiration date.

NW18 8/9 POLST Survey

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The Coalition for Compassionate Care of California is conducting a survey to better understand the level of interest and engagement in a state-wide electronic Registry of Physician Orders for Life-Sustaining Treatment (POLST).  POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR.  Printed on bright pink paper, and signed by both a patient and physician, nurse practitioner or physician assistant, POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient’s wishes are honored.  Since it’s designed to be readily available to all healthcare practitioners in any setting or circumstance, electronic availability would promote its purpose.  For more information and a sample of the California form, see https://capolst.org/.  Take the survey, if possible before August 9, 2019, at https://www.surveymonkey.com/r/3XC2PGX.

Depression Toolkit Revised

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The National Forum of ESRD Networks has revised the Dialysis Patient Depression Toolkit and added a video.  Find the revised English version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-english and a Spanish version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-spanish.  A related video interview with a dialysis patient has also been recorded.  Find it at https://www.youtube.com/watch?v=N7Iv6JytQt4.

My Choice, Home Dialysis Online

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The video My Choice, Home Dialysis has been placed on YouTube where it can be accessed easily.  It features patients describing the advantages of home dialysis in their own words.  Find it at https://www.youtube.com/watch?v=ZquRiZ0RwSU.  For subtitles:

  • Click on the gear symbol (“Settings,” in the lower right)
    • Click on “Subtitles/CC(2)   Off >”
    • Click on “Spanish – Default” or “English – Default”

YouTube can also translate subtitles into more than a hundred additional languages.

HDC Fluid Restriction Calculator

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Home Dialysis Central has published a Dialysis Fluid Restriction Calculator to answer the question, “How much can I drink between dialysis sessions?” individualized for each patient.  For the Calculator and discussion, see https://homedialysis.org/news-and-research/blog/265-a-new-dialysis-fluid-restriction-calculator.

Preventing Organ Stunning

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Home Dialysis Central has published a summary of “organ stunning,” where dialysis removes too much water, or removes it too quickly, and your internal organs are shocked.  This can damage your organs, and the damage may be cumulative.  The HDC article covers the causes and processes of organ stunning, and most important, describes how you can avoid it.  Find the article at https://homedialysis.org/life-at-home/articles/organ-stunning-on-hemodialysis-what-is-it-and-what-can-you-do.

3/7+ NW16 Legacy Transplant Class

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Legacy Transplant Services will present four classes on Is Kidney Transplant Right for You? in Portland during 2018, on March 7, May 3, September 12, and November 8.  For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/Legacy/LegacyTrx0318.pdf, and register at http://www.legacyhealthevents.org.

New NKF Patient Support Communities

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NKF and HealthUnlocked have created four new online communities to provide help, support, and information for:

HealthUnlocked is the third largest health website in the UK and in the top 20 globally.  With over 40 million users per year in over 500 unique communities, the HealthUnlocked website increases patient engagement and contributes to improved health outcomes through its online health and well-being forums.  https://healthunlocked.com/ is a social platform and mobile application with moderated online health communities in which visitors can access useful information and services; seek advice, support and mentoring from peers; be empowered to make better healthcare decisions; and help advance medical research and understanding.  The HealthUnlocked platform is used as a clinical care planning tool in 75 hospitals in the UK.

Find the NKF announcement at https://www.kidney.org/news/new-collaboration-between-nkf-and-healthunlocked-to-provide-free-online-support-community .