How to help a loved one with PAH manage multiple medications

When a person has pulmonary arterial hypertension (PAH) the blood vessels in the lungs become thickened and inflexible. These changes can occur due to inherited genetic mutations or underlying medical conditions (such as certain autoimmune diseases or chronic infections). However, many cases are idiopathic, with no identifiable cause.

As the walls of the pulmonary arteries become thickened and inflexible, the heart (specifically, the right ventricle) is forced to work harder to pump blood through the lungs.

In the early stages of PAH, a person may experience shortness of breath (especially during physical activity), chest pain/discomfort, and fatigue. As the disease progresses, other symptoms and complications can occur, including right-sided heart failure.

Treatment for PAH

There is no cure for PAH, and treatment focuses on goals like managing symptoms, improving quality of life, and slowing progression. Medications used in the treatment of PAH include:

• Vasodilators, drugs that help open up the narrowed blood vessels in the lungs to lower blood pressure
• Medications to manage complications, such as diuretics to reduce fluid buildup or anticoagulants to prevent blood clots
• Drugs that slow or reduce thickening of the blood vessel walls
• Medications that treat any underlying or coexisting conditions

Managing multiple medications

Some PAH therapies are taken as oral medications, some are inhaled, and some require infusions either into a vein or into the subcutaneous layer just below the skin.

Following a treatment plan with multiple medications that are administered in different ways can be challenging.

As a caregiver, this is one area where you can have a direct impact on helping a loved one manage PAH. The strategies below can help. Review this list with your loved one, work together, and find strategies that work for you.

Have clear instructions and training, if needed

• Have clear instructions for taking each medication, including what times each medication needs to be taken and any other instructions, such as taking a medication with or without food.
• Have proper training on how to use and care for any medical devices, including inhalers and infusion delivery systems.
• If you have any questions or concerns about a medication, ask your loved one’s healthcare provider and/or pharmacist.

Stay organized

• Write down the medication schedule in detail, including daily medications and appointments for infusions. Keep this schedule in a place where it is easy to check, which can be useful if caregiving responsibilities are being shared among several people.
• For oral medications, consider using a pill organizer that organizes individual doses for each day of the week. Set a reminder to refill the organizer at the same time each week.
• Store all medications and supplies in one place and keep that space well-organized.

Reminders and routines

• Set alarms and reminders for each medication on you and your loved one’s phones.
• Make taking medications part of a daily routine, such as brushing teeth.
• Have a backup reminder, such as a note or other visual reminder in a place where it will be difficult to miss.
• Add all appointments to calendars. This includes checkups with a healthcare provider as well as doses of medications that need to be administered at a healthcare provider’s office.

Plan ahead

• Plan for interruptions. Have doses of medications ready if your loved one will be out of the house and may not be home in time to take a medication.
• Plan ahead if your loved one is going to be traveling. Pack enough medication, have a copy of your loved one’s schedule, medical information, and emergency contacts.
• Also inform your healthcare provider about travel or anything that could conflict with scheduled appointments.

Last but not least, if your loved one is having difficulty taking medications for any reason, talk about it with their healthcare provider.