TRANSITIONING: need-to-knows

Preparing to take on your own PH care means more than knowing what PH is; it means knowing your medications, who to call in an emergency, how PH may impact your lifestyle choices and how to find an insurance plan that works for you.

My Info

Courtney, a PH Teen, with her mother at PHA on the Road: PH Patients and Families Education ForumCourtney, a PH teen, with her mother at PHA on the Road: PH
Patients and Families Education Forum (Chicago, Ill.)

What medications are you on? Sit down with your parents or your doctors to fill out this medications list and make sure you know all the details for your medications and pharmacies (RTF). 

Your new PH care team will want to know about your medical history - symptoms you experience currently or experienced in the past, treatments you've tried, procedures you've undergone. Knowing this information will help you feel more comfortable discussing your own treatment with your PH team. Gather your medical history with help from your parents or your doctors with this form (RTF).

What insurance do you have? Read about insurance and fill out this form (RTF) with your current insurance information.

In Case of Emergencies

Fill out this form with your emergency contact info (RTF).

Tips for being prepared for an emergency:

  • You and your parents/caregiver/significant others should all have your doctors’, nurses’ and hospital emergency telephone numbers programmed directly into your phones. If you have not already done this, DO IT NOW! You can also program “ICE” which stands for “In case of emergency” as emergency medical providers are trained to look for this on a patient’s cell phone.

  • Contact your local fire department/EMT service and inform them of your disease and medications. Fire departments can often keep a record of your information so that they may better care for you in cases of emergency.

  • Get a MedicAlert bracelet and carry a wallet card with your medical information. You can include such things as “Don’t stop pump,” “Takes Coumadin.”

  • Always have extra mixing supplies, back up pump and dressing supplies.

  • Carry a list of your medications and how to administer them. These instructions will help guide your care when you are initially taken to the emergency room. These instructions have been provided to you or your parents/guardians. If you do not have them, please request a copy from your PH medical provider.

  • If you go to the emergency room because of your PH, please be sure to notify your PH medical team.

  • Speak with your PH medical team about specific ways to handle emergencies for pump alarms or reactions to your medications, and what symptoms to be alert for. Have this conversation BEFORE there is an emergency!

Advance Directives and Durable Power of Attorney

An advance directive is a legal document that tells your healthcare team and family what kind of medical care you would want if you became too ill to communicate your wishes on your own.

A durable power of attorney is a legal document that names a person who you choose to make healthcare decisions for you if you are unable to do so.

Arranging an advance directive or a durable power of attorney can be an important step to take before an emergency happens. This way you know that your choices, or the choices of someone you trust, will be taken into consideration if your healthcare team or an Emergency Medical Team has to make decisions on your behalf.

Medications to Avoid

You should try to avoid medications that can cause you to have an increased heart rate. If your primary care provider prescribes a medication, be sure to ask if it will have any effect on your heart or if it will interact with one of your other medications. Albuterol and medications containing pseudoephedrine can cause you to have an increased heart rate. If you are still concerned, please ask your PH medical team for further advice.

For a list of medications that may interact with with your PH treatments, read PHA's list of medication interactions and side effects.

Pulmonary Hypertension and Birth Control

Carrying a child can be dangerous for PH patients due to the increased strain it places on the heart and lungs. In a normal pregnancy, your blood volume increases by about 50%. The sudden change in blood volume during and after delivery can lead to right-heart failure in PH patients whose right-heart is already overworked due to the increased pressure in their pulmonary arteries. Some of the medications prescribed to PH patients are also known to be harmful to the developing fetus.

Because of the risk of pregnancy to both the patient and the fetus, PH specialists recommend that sexually active women with PH use adequate pregnancy protection, occasionally requiring multiple approaches. PH patients should talk to their doctors about their current medications and the different birth control options available and work together to identify the safest, most effective approach.

Please talk with your doctor if you are or are thinking of becoming sexually active. For more information on relationships and peer pressure, read PHA's article on Friends, Peers and PH.

For more information on family planning, visit PHA's section for Young Adults

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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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NORD

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.