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Discussing Work & Personal Life With Your Doctor

Chronic thromboembolic pulmonary hypertension (CTEPH) symptoms can have an impact on your work and personal life. Tiredness can make you not want to do anything, while shortness of breath may limit how far you can walk or climb stairs. Dizziness or the possibility of fainting may make driving unsafe. It’s important to remember you have the support of family and friends when you need it.

Working with CTEPH—defining your daily grind

Talk with your doctor about any work limitations, as CTEPH may limit your ability to work outside of your home. If you are able to work, having a conversation with the human resources department about your schedule can help. You may want to see if you can work part time, on a reduced schedule, or work from home some of the time. Make sure you know your employer’s policies for sick days and extended leave under the Family and Medical Leave Act (FMLA). If you can’t work because of your CTEPH, consider filing for disability.

Traveling with CTEPH—how to jet-set safely

If you have travel planned, meet with your doctor to make sure it’s still safe for you. Before leaving home, here are some things you can do to make traveling with CTEPH easier:

Fill all of your prescriptions and pack more than you think you’ll need in your carry-on bag

Keep a list of your medications and your doctor’s and pharmacy’s phone numbers with you at all times

If you use supplemental oxygen, make arrangements at least 2-4 weeks ahead of time

If you are leaving the country, make sure you know about any restrictions on traveling with medical supplies before you leave

Sexual health

Always talk with your doctor if you have concerns about your sexual health. If you’ve noticed your sex drive is not what it used to be, you’re not alone. An international survey found that a majority of people with pulmonary hypertension (PH) and their partners reported a decline in sexual intimacy. This could be because you’re afraid to exert yourself or your partner is worried that he or she may hurt you. Talk openly with your partner about your feelings. If you don’t feel physically up to making love, you can still be intimate by holding each other or kissing.

NEXT: Helping Your Caregiver Help You

CTEPH Resources

Get additional info and support from these helpful materials and websites.