Caregivers play an important role in helping loved ones live with PAH. One thing you can do is to keep talking. Remind your loved one that you’re there to offer support and help along the way.
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There are several websites that can help you to become more informed about PAH. You can see a list of additional resources to help you get started.
If you and your loved one are taking a trip out of town, look up nearby centers that have PAH specialists. Talk to your doctor about finding a specialist.
If your loved one doesn’t already have a specialist, do some research to help find one.
At times, you may struggle with the responsibilities that come with caring for someone with PAH. Don’t be afraid to express how you’re feeling or ask for help from others.
Life with PAH has many small details to keep in mind. There are healthcare provider appointments to keep track of and monthly prescriptions to be received. Record important dates in a calendar or journal. This can help your loved one stay on track with treatment.
It’s helpful to decide who should attend healthcare provider appointments with your loved one. Remember, you need support, too. Ask other family members or loved ones to pitch in. Want to talk to another caregiver? The Pulmonary Hypertension Association has a free Caregiver-to-Caregiver Support Network.
About Cheryl: Cheryl was diagnosed with PAH in 2011. She is a mother, grandmother, and photographer who loves exploring the outdoors. Cheryl is focused on looking forward, setting goals with her doctor, and knowing when to "sit out" and rest.
About Karla: Karla was diagnosed with PAH in 2003. She finds the greatest joy in spending time with family and loves anything that involves the theater. Karla knows the importance of setting goals with her "new normal" in mind.