Adult CHD Survivors of Cincinnati

Encourage, Educate and Empower!

Adult CHD Survivors of Cincinnati is a group of ACHD patients and medical staff dedicated to providing support and education to the ACHD/CHD community. This 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/consoler
– 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 understand 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 another staff member besides doc about concerns (nurse, social worker)
– 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 peer/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, adoption)
– Genetic consoling
– Hormonal changes, 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 popualtion which includes congenital heart disease patients. MedMentor collaborates locally with Cincinnati Children’s Hospital and the Children’s Heart Association of Cincinnati to provide support to our local families. Check out the MedMentor Facebook page for more info. Currently the program is in its pilot stage but is taking application for both mentors and mentees. Click here to apply or visit their Facebook page for more information.

 

Click here to learn about the Adult Congenital Heart Disease Patient Camp

 

Click here to see the upcoming Adult CHD Survivors of Cincinnati meeting and event schedule