Recap of Support Group Meeting: Emergency Preparedness and Special Needs

cardiac-156059_640Before Denise’s video chat on Friday she asked me how our local PH support group meeting was the night before. We chatted about this for a few minutes and I told her that I write a recap after every meeting on the group’s Facebook page which I manage. She asked me at this point if I would also do a blog and copy it here which I was happy to do so this is the recap of our meeting.

Our speaker was Tom Daniels and I believe he said he was a retired EMT who works with Orange County which includes the city of Orlando, Florida. He spoke about Emergency Preparedness and Special Needs. This is pertaining to Orange County only. Since our meetings are in Orange County we couldn’t get any other county EMT or fire chief to attend.

Orange county receives over 200, 000 calls a year.

How to Reduce Impact of a Disaster
* create a personal support network
* personal assessment of needs
* collect information and take action that will your meet your needs
* gather essential supplies
* make your home safer

Personal Support Network
* organize at home, school, or work place
* family, friends, caregivers, co-workers
* discuss needs and expectations
* communication
* equipment/personal car

List of personal needs:
*service animals
*ability to get around

Make a plan and take action:
* emergency information list
* medication/medical information list
* identify safe places
* identify main utility cut off valves/switches at your home
* identify the exits out of your home in an emergency situation
* prepare an evacuation plan

Create an emergency kit:
* copy of insurance cards, medical history
* any supplies pertaining to the disability
* 30 days worth of medication
* non-perishable food
* water
* first aid kit (his opinion was to go to a certain website which I didn’t catch and they could tell you what to include in one to make your own as opposed to buying a pre-made one)
* change of clothing
* toiletries
* batteries/flashlights
* radio
* cash
* supplies for service animals
* fill your car with gas

Safe at home and office:
* check for hazards
* emergency lighting
* evacuation route
* register with special needs shelter

In Orange County 4,000 people are on the special needs registry with a wide range of needs. Registration is by various methods.

Special Needs Units/Shelters:
* caregivers are encouraged to accompany registrants
* generators, medical and shelter supplies
* cots
* plan for at least 72 hours at a shelter
* Food services are provided through Orange County Public Services , Red Cross and Salvation Army
What to bring to a shelter:
* 30 day supply of medication
* any non prescription medications
* food and water
* blanket, pillow, chair, cot
* change of clothing
* can opener
* other items such as glasses, portable oxygen, DNR orders etc.
* caregivers must bring their own provisions

* listen to your LOCAL stations for any information
* don’t listen to unconfirmed rumors
* Call the County Citizen Information Center at 407-836-3111 (this is for Orange County only)

What if I need to evacuate:
*where / what shelters are opening
* call Citizen Information
* speak with special needs program
* phone triage
* transportation if needed

Predictions for the 2014 east coast storm season June 1st – Nov. 30th:
9 named storms
3 of those will be hurricanes
1 will be major
35% chance of one of these hitting the US

I was disappointed and really wanted a fire chief/EMT worker/panel to come to our meeting and discuss what we can do as patients or caregivers to make sure that in an emergency situation the first responder is aware of Pulmonary Hypertension because of the rarity of the disease and how to treat a patient who is on continuous medication either through a catheter directly to the heart or subcutaneously. They need to be aware that they aren’t to put medication, fluids etc. into the catheter nor is the subcutaneous pump to be stopped or unplugged for any reason unless by permission of the patient’s PH specialist. It is very important that Nicole or any other patient who takes Revatio (Viagra) or Adcirca (Cialis) not be given nitrates as this will cause the blood pressure to crash and can be fatal but this will be one of the first things that a first responder will do if there is chest pain.

When Nicole was put on subq Remodulin I called the fire station that would respond to a 911 call at our house and the fire chief came to our house and met Nicole. I asked him what we could do to make the EMT’s job easier. I need to update it but I have a First Responder Sheet that I received from the specialty pharmacy where I get her Remodulin for her pump. I also have an information sheet from her doctor about PH and Nicole’s current medication list in a sheet protector hanging on the cork board in our kitchen which is where the fire chief told me to put it. On this first responder sheet I have in block letters and highlighted: Do Not Give Nitrates. I also have my cell phone and a note to call me immediately if there’s an emergency situation. I always write in block letter: Do Not Detach or Turn Off Pump for Any Reason Without Prior Consent of her PH Specialist.

After listening to Richard on Table Talk I would love to get business cards to clip to the first responder sheet.

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2 Comments on "Recap of Support Group Meeting: Emergency Preparedness and Special Needs"

May 25, 2014


I just saw your post! I might be able to accomplish this for you! I will catch you offline!


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May 25, 2014

Jane, What a great post! I love, love, love the fact you called the local fire station and the fire chief came out to meet Nicole. Since we’re moving I was thinking I needed to at least call the fire station that is associated with the new place (wherever that might be) in order to be sure they are able to transport Robert to his primary hospital, if needed. I thought that must be a crazy thing to do but love hearing that you contacted yours and they were more than receptive to getting information about Nicole and her illness. Thanks so much for being such a great advocate!