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 survivingchd@gmail.com.

Topics related to ACHD and 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

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 MedMentor website to apply, or go to their Facebook page for more information.