First of all, emergencies will happen, so being prepared is your #1 defense against untoward events. Also, preventing emergencies is much easier than dealing with emergencies. So remember to prevent and anticipate!
General PH emergencies (related to your disease)
Some of these symptoms may not be actual emergencies, but at least a phone call to your PH center will be wise.
- Fainting/near fainting
- Coughing up blood
- Chest pain
- Rapid or irregular heartbeats
- Sudden shortness of breath
- Unusual (for you) fluid retention
- Dark tarry stools (if you are on coumadin/ blood thinner)
Remember to carry your Ventavis (Iloprost), Remodulin or Flolan nebulizer/pump and supplies with you wherever you go, ESPECIALLY when going into a hospital.
Flolan Emergency Preparation
- It's a good idea to contact your local Emergency Services before an emergency occurs.
- Call 911 and see where the dispatch will be sent from
- Get the direct phone number and record it on your cell/home phone
- Give a copy of your emergency letter to the supervisor and ask that the vital information be recorded on file so that it will appear on the dispatcher's screen.
- Medic-Alert bracelet 1-888-633-4298
- Consider Life-Line services
- Carry your emergency supplies and phone numbers with you at all times.
Why is it such an emergency?
- Flolan is a medicine that has a 6-minute half life. That means the amount of medicine in your body decreases by 1/2 in 6 minutes. Any prolonged stopping of this medicine can potentially have fatal consequences due to rebound pulmonary hypertension. (Flolan can be inadvertently stopped due to human error, catheter kinking, clot in the line, or untrained medical personel stopping the infusion.)
- Flolan is also administered by a central line catheter. This menas it dwells in a large vein that is close to your heart. Any infection can spread down the catheter and can infect your blood and then be spread throughout your body. This can be fatal if not treated/detected early.
Because there is a central catheter placed, any dislodgement can result in bleeding or clot embolus (a migrating clot), or rarely, an air embolus.
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