Transition to Independence

Transitioning to Independence

Congratulations! You are an adult now. This means that you’ll have to handle all the medical history, details, and care that your parents originally took care of. With good medical care and planning, a healthy, long, normal, and productive life with CCHS is possible.

Many issues need to be addressed as a young person with CCHS begins the transition to adulthood. Please consider the items below.

Do you know your medical history?

Suggestion: Before a move to independence work with your family and physician to organize all this information.

Medical condition and past history
Genetic data
Past surgeries
Significant test results
Current baseline information:
• Sleep study
• Echocardiogram
• EEG
• CXR, respiratory cultures
Any other associated conditions:
• GI, seizures, heart, eye, orthopedics, Endocrine
Respiratory symptoms of CCHS:
• What do I look like when I am sick?
• Can I tell if I am getting sick?
• Normal 02 saturation and CO2 baseline.
• Ventilator settings
• Tracheostomy size and type
• Diaphragm pacer and settings
• BiPAP and other ventilator devices
• What treatment do I need when I have respiratory changes?

Do you know your medical history?

Suggestion: Before a move to independence work with your family and physician to organize all this information.

Medical condition and past history
Genetic data
Past surgeries
Significant test results
Current baseline information:
• Sleep study
• Echocardiogram
• EEG
• CXR, respiratory cultures
Any other associated conditions:
• GI, seizures, heart, eye, orthopedics, Endocrine
Respiratory symptoms of CCHS:
• What do I look like when I am sick?
• Can I tell if I am getting sick?
• Normal 02 saturation and CO2 baseline.
• Ventilator settings
• Tracheostomy size and type
• Diaphragm pacer and settings
• BiPAP and other ventilator devices
• What treatment do I need when I have respiratory changes?

What Safety Issues Should You Consider With Independence?

Suggestion: Identify 3-5 family or friends that will be part of your support network as you live independently.

Do I hear alarms and respond appropriately?
Should I live on my own or have a roommate?
Who needs to know my CCHS issues outside my family?
Is my future living arrangement safe?
What arrangement should I make to ensure that my breathing is supported if my mechanical ventilation fails?
Should I invest in a 24/7 emergency monitoring system?
Should I purchase a Medical Alert ID?

Are you able to drive independently?

Suggestion: Plan how you will get around–to work, to events, to home–before transitioning to independence.

Do you have a driver’s license?
Will you have a car?
Will you need special transportation arrangements?

Ask Yourself What Does Independence Mean?

Suggestion: Speak realistically and honestly with your medical team about drugs, alcohol, and safe-sex.

Will I still need to rely on my family?
Does independence mean I should be reckless with:
• Tobacco and Alcohol?
• Recreational drugs?
• Unprotected sex (Are you aware that unprotected sex might result in pregnancy with a 50% chance of having a CCHS baby?)

What Future Health Issues Will I Need To Manage When I Am Independent?

Suggestion: Before independence plan out all these issues.

Who manages my help health issues and appointments?
Who maintains my insurance?
Who will keep track of my Medical records?
Who will handle my medication refills, pharmacies, vendors, hospitals, emergency rooms?
Are their adult practitioners that know about CCHS in my local area?
Who will arrange my home nursing service if I need that?
What/who should I include in my ICE contact list (In Case of Emergency Numbers)?

What Else Do I Need To Do To Make Independence a Reality?

The above information was extracted from presentation by Sheila Kun, RN, BSN, BA, MS, Nurse Care Manager, Division of Pediatric Pulmonology, Children’s Hospital Los Angeles entitled Surviving the Night: Independent Living for CCHS Young Adults.

Here is a link to the video of the presentation.