Reflections on the Patient Education Symposium

About 80 patients and a sizable handful of people in the medical profession were at the patient education symposium last Sunday at the Lorenzen Conference Center at Legacy Emanuel.

The event was kicked off with Robert Phillips as our keynote speaker.  He spoke to the stages of grief that people experience with renal failure and how to maintain a positive attitude by remembering that we are more than our illness.  We are mothers, fathers, brothers, sisters, aunts, uncles, sons, daughters, and grandparents.  A lot of head nodding took place as people related his experience with their own.

 

Dr. Amira Al-Uzri from Doernbecher offered a presentation to the group following Robert which addressed the transition of the pediatric renal patient to the adult patient population.  Her suggestion was to start this transition at 12 years of age.  She brought in some surprising information from the World Health Organization about adolescence ending around age 24... much later than the popular notion that it ends as soon as the child leaves home at 18 years of age.  Adolescence encompasses the time in which the young person is defining who they are.

Before lunch break, awards were given to patients who are not just surviving but thriving on dialysis and to the caregivers who support them on their journey.  As one would only expect, many of the awards went to people who were living and thriving elsewhere that day.  For the recipients who were absent, Troyce shared their accomplishments with the symposium participants.

Following this was an informative section with Lisa Hall and Jaime Head speaking about Vocational Rehabilitation and how disability benefits are affected by social security's program ticket to work.  One of their basic messages was that earning up to $720/mo is allowable indefinitely and over $720 is allowable for a nine month trial period which need not be consecutive.  There are a lot of options for people to try out work when they feel up to it and not get penalized.

The last structured event was the patient panel talking about dialysis modality options which was led by five patients currently undergoing those treatments.

For those who were unable to attend this symposium, there is another planned for the fall.  The speakers, volunteers and themes come directly from the members of the kidney community here in the Portland area.  If you would like to see or hear something in particular, please feel free to join us in the planning of the next event.  We welcome your energy and your input.