UJ support group meeting minutes

April 30, 2018

Discussion to be prepared to LIVE with PH.  Here are some of the topics reviewed and discussed.

You can add medical information to your iPhone. Use red star medical id to store information that EMTs can access even if screen is locked.  How do I do this?

Access the search screen of your iPhone

Search “health”

You will need to fill in 4 features.  Include the following:

Indicate if you have a medic id (check with your insurance to see if they may cover the cost of a medic alert)

List Accredo (as of 2018:  866-344-4874)

or CVS Caremark (as of 2018:  877-242-2738) phone #

Put a note on your pump that it cannot be stopped for any reason and that it is ONLY used for your PH medicine (Remodulin, Veletri, etc.)  Consider writing this info on an index card.  Be sure to label your cassette with dose, rate, etc.

List your blood type

Indicate if you are an organ donor

Have a list of your medications (dose and how/when to take)

FRIDGE:  emergency contact list, proxy

Storm’s coming?  Be sure you get extra O2 in the event your power is out for extended periods.  CMP can put us on a priority list (contact your utility supplier CMP directly) but there still may be delays.  Ask your oxygen supplier for a large oxygen tank (I have a 12 hour emergency tank in my closet).

Travelling with O2?  be sure to contact your airline for information to carry a portable oxygen concentrator.  Be sure to get batteries that will last a minimum of 1.5 times your expected flight duration.

Plan ahead

Let your specialty pharmacy (Accredo or CVS Caremark)  know if you are traveling

Ask doctor for best ER hospital for wherever you are traveling to

PHA has a “Living with PH” web page that has a wealth of information such as travel, a readiness toolkit, etc.

Stay healthy, eat healthy, exercise within the limits outlined by your doctor, place fun at the top of your list of things TODO:)

Be well,