Adult CHD Survivors of Cincinnati

Encourage, Educate and Empower!

This group of ACHD patients and medical staff is dedicated to providing support and education to the ACHD/CHD community. The group meets monthly and all ACHD survivors are welcome to attend!  For more information, please email [email protected].

MedMentor

MedMentor of Greater Cincinnati is a community-based mentoring program that connects patients ages 10-19 with mentors who provide ongoing social, emotional, and self-management support. They focus on the chronically ill patient population which includes congenital heart disease/defect patients. MedMentor collaborates locally with Cincinnati Children’s Hospital and the Congenital Heart Alliance of Cincinnati to provide support to our local families. Currently, the program is in its pilot stage and is taking applications for both mentors and mentees. Visit the MedMentor Facebook page for more information.

Topics related to ACHD & transitional care:

Emotional Support
  •  Discussion of mental health needs and encouragement to speak with a professional
  •  Inclusion and support for patients with developmental disabilities by collaborating with other departments
  •  Project Search, Thomas Center for Down Syndrome
  •  Peer discussion of anxiety/depression
  •  Dealing with physical limitations
  •  Cardiac rehab
  •  Training
  •  PT, OT
  •  Seeking help
  •  Finding a therapist/counselor
  •  Medication
  •  Therapeutic yoga
Support During an Appointment/Procedure/Hospitalization
  •  What to except during an appointment as an adult
  •  Building a support team through family/friends
  •  Preparing for an appointment or procedure
  •  Patient visiting program
  •  Organizing and understanding your meds
  •  Safety during an emergency
Finding Your Voice
  •  Transitional care support
  •  Mentor/buddy program
  •  Encouraging communication with doctors, and other staff
  •  Writing down questions/concerns
  •  Telling staff members, in addition to doctors, about concerns (nurses, social workers)
  •  Taking notes during appointments
  •  Promoting self-management and self-advocacy
  •  Finding independence
  •  Sharing your experience with the public
  •  Family education day
  •  Tell your story with pride
Work/Life Balance
  •  Time management/organization
  •  Educational support
  •  Relating to peers/having a social life
  •  Open communication about high-risk behavior
  •  Choosing a career
Family Planning
  •  Contraception for ACHD patients
  •  Pregnancy
  •  Collaborating with other facilities to build a pregnancy team
  •  Family planning options (surrogacy and adoption)
  •  Genetic counseling
  •  Hormonal changes and menopause
  •  

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