Create an Emergency Kit

First aid kitIt's important for PH patients to keep their PH-specific medications and medical supplies with them at all times. Preparing an emergency kit is the best way to ensure you have everything ready at a moment’s notice. Consult with your PH medical team to ensure that your emergency kit includes everything you need. You can also use the Emergency Checklist and other templates in PHA's Empowered Patient Online Toolkit to get started.

Some "must haves" in a PH emergency kit

  • Emergency phone list. This list should include basic local emergency phone numbers, plus numbers for all of your doctors, your specialty pharmacy and drug reps, and the direct line to the ambulance company that provides service to your area.
  • Doctor's note. Ask your physician to write a note that briefly explains the specifics about your illness and your medications. You may want to make this into a small laminated card that is easy to carry with you.
  • Medication list. It is critical that you have a complete list of all medications that you are taking, whether they are prescription, homeopathic or over the counter. This includes the ones you take regularly plus those you take "as needed." Medical professionals need a list as a quick reference to ensure they do not give you something that is contraindicated. Make sure oxygen (and your dose/flow rate) is on the list if you are using oxygen.
  • Medications. Even though you have a list of medications, you need to keep a kit of all medications handy and take them with you when you travel or go to the hospital. Some medications are available only through a specialty pharmacy and may not be on-hand at a hospital.
  • Medical supplies. You need to gather all supplies for mixing, dispensing, infusing or inhaling your medication. This includes pumps, inhalers, syringes, needles, batteries, valves, extension tubing, alcohol pads and cleaning supplies.
  • Thermometer. Never leave home without a thermometer. Take your temperature if you think you have a fever (one of the signs of infection).
  • Blood pressure monitor. These are inexpensive and invaluable when you need to provide vital information to your doctor over the phone. The smaller wrist cuff models take up less space in your kit.
  • Cell phone. Always carry a cell phone and let people know where you are going if you are traveling alone. Consider signing up for your phone carrier's roadside assistance program or joining AAA/Auto Club.
  • Medical alert identifier. It's always a good idea to wear a medical alert bracelet or necklace that gives emergency personnel details about your condition(s). Learn more
  • Overnight bag. Put together a small bag with some loose-fitting clothing, pajamas, slippers and some basic toiletries for the hospital or the trip home.

Additional items to include if you're on infused medication:

  • Back-up pump. If you are on infused medication, keep your back-up pump in your emergency kit. Remember that despite safety standards and careful monitoring, these devices can fail.
  • Catheter site supplies. If you have a catheter, you need to have all your site cleaning and dressing supplies with you. This includes gloves, mask, alcohol pads, dressings, tape, etc.
  • Site pain supplies. If you are a patient on subcutaneous Remodulin, you will also need to carry with you the local, topical and systemic medicines and creams you use to manage site pain.
  • Portable cooler and ice packs. If you must refrigerate your medicine (i.e. Flolan), a relatively small portable cooler box or bag and some large ice packs can make an excellent refrigerator in the event of an emergency. Make sure there is room in the cooler for the ice packs, your back-up medicine cartridge (place the cartridge inside a plastic baggie to limit condensation), and several of the small plastic ice packs you use in your pump pouch. This will keep your medicine cool for several hours.

Additional items to include if you use oxygen:

  • Oxygen information. Keep a copy of your oxygen prescription or dosage in your medicine bag.
  • Back-up oxygen tanks. Most oxygen concentrators do not have battery backups. Large liquid oxygen tanks (stationary) are very difficult to move. Portable tanks can be lifesavers during power outages or natural disasters until you can get to a constant supply.
  • Oxygen regulator. You will need a regulator for portable tanks to control the flow.
  • Oxygen tank tool. Get one of these plastic tank tools to turn on the oxygen. Do not use pliers. While the possibility is remote, metal (tool) on metal (tank) could cause a spark, and sparks do not mix with oxygen.
  • Tank cart. Carrying a portable tank can be difficult for some patients. A tank cart makes it easier for you to get around without assistance. Many wheelchair and scooter manufacturers also make tank holders for their products.
  • Nasal cannula. You need a nasal cannula to dispense oxygen. Keep a spare in your kit just in case. They wear quickly and are easy to damage. Some oxygen tanks require special cannulas.
  • Connectors and tubing. Take along an extra section of oxygen tubing and a couple of connectors, even when you go to the hospital. If you forget these, it is inevitable that your tubing will be a few feet short of where you want to go.
  • CPAP or BiPAP machine. If you suffer from sleep apnea, you must have your CPAP or BiPAP machine and mask/tubing/humidifier with you. Take it with you to the hospital to ensure you have a mask that fits and that pressures are correct. Remember your oxygen enrichment (bleed) connector if you use one.
 

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.