Blog post
AKF and HDU provide support and education for patients interested in home dialysis with virtual one-day summit
The American Kidney Fund (AKF) and Home Dialyzors United (HDU), a nonprofit advocating on behalf of the home dialyzor community, partnered to host the first Dialysis at Home: Kidney Community Event on Sept. 15. Dialysis at Home was a one-day virtual summit that brought late-stage chronic kidney disease, end-stage kidney disease (kidney failure) and dialysis communities together for a series of sessions about home dialysis. The summit had nearly 1,500 registrants and included six sessions, two patient panels, a health equity discussion and more.
Missed Dialysis at Home: Kidney Community Event? Don't worry! All sessions were recorded and can be viewed at your leisure. Here are a few sessions you may be interested in watching:
Understanding Your Home Dialysis Options
Home dialysis can offer patients more flexibility, but it is not a one size fits all treatment option. Experts Shawn Gage and Joanna Neumann joined home dialysis advocate Christina Gilchrist to discuss things patients should know and consider before starting home dialysis.
In this inspiring session, Joanna gave advice on how to make the best decision on choosing a home modality. Recommendations included speaking to current dialysis patients to learn more about their experiences. She also noted that dialysis is a journey and a person's modality option may change over time to fit their lifestyle. Christina noted that home dialysis can allow people to be more independent and be an active participant in their healthcare. As a key takeaway, Shawn advocated for patients to ask their clinician as many questions as possible about home dialysis and for clinicians to think from the patient perspective to make sure everyone is informed.
Why Peritoneal Dialysis May Be For You
Another treatment method for kidney failure is peritoneal dialysis (PD). It uses a fluid that is put into the belly and removed to clean the blood. Dr. Maria Camila Bermudez joined Patricia Patterson, a PD nurse, and Alysha Ennis, an experienced PD user, to provide an overview of PD and share how to determine if it is a good option for your lifestyle.
Each speaker had interesting opinions and insights to share with the audience: Alysha encouraged patients to consider PD as a treatment option because it allows patients to get their "life back." Other reasons mentioned for considering PD include having more energy, opportunities to travel and additional time to spend with family and friends. Patricia is a PD advocate because it is a great bridge to a kidney transplant. Dr. Bermudez recommends PD to her patients because it can be done without or minimal assistance. PD is also gentle, and many patients have a positive experience using this treatment method.
Advocating For the Care You/Your Loved Ones Deserve
A diagnosis of chronic kidney disease not only affects a patient, but also their family and friends. Kidney health advocates Lisa Burgess and Dawn Edwards joined licensed clinical social worker Renee E. Bova-Collis for an engaging discussion on how to advocate for yourself or loved one after a diagnosis.
To advocate for you or your loved one's care, the speakers recommended asking your health care team specific questions. Dawn recommended asking your health care provider about how to take care of yourself. This includes asking how to prolong kidney function, treatment options and how to empower yourself. As a care partner, Lisa suggested finding resources and joining support groups, such as HDU's Facebook group. These dialysis resources were used as a discussion tool during appointments with her loved one's health care provider. Renee shared insights about the ESRD Network and how patients and families can use it as a resource and advocacy tool. She stated the ESRD Network is available to assist patients and families if they are having difficulties with their dialysis facility or other concerns.
Dialysis at Home: Kidney Community Event was made possible by the generosity of Leadership Sponsors Satellite Healthcare and Outset Medical. AKF and HDU are also grateful for the sponsorship of Baxter, Diality, NxStage and U.S. Renal Care.