Advice From PAH Initiative Ambassadors

Q: What techniques or tools do you use to make showering less tiring and more comfortable?

Nicole, living with PAH: I take cool or lukewarm showers because heat makes me tired. I find that a detachable showerhead can help you control where the water is going, move less, and keep the catheter site dry for people using infused pump therapy.

Jane, caregiver to daughter, Nicole: When Nicole was first diagnosed, we got her a shower chair. That has been great, and she can wear her oxygen in the shower. On the days she needs to wash her hair, I help her out.

Q: What kind of recipes are easy to prepare, and what should those with PAH aim for when it comes to their diet?

Denise, living with PAH: Meal prep and planning is such a big help. That and a low-sodium diet. Prepping is key to sticking to that diet. Even cooking ahead when you have energy can help you out later when you’re too tired. Slow cookers can also make things easier. It also helps to have an easy go-to food that you like and can eat anytime so that on bad days, you can just grab it and go. For me, that’s things like hard-boiled eggs, yogurt, or fruit!

Q: When it comes to household chores like laundry, cleaning, or cooking, are there any shortcuts that can save time and energy?

Lauren, living with PAH: Set goals for yourself, especially in terms of physical activity (under the instruction of your doctor, of course). Stay focused and challenge yourself to function the best you can physically, mentally, and emotionally.

Gwen, living with PAH: I know I can’t do everything in 1 day, so I make a to-do list of what I will accomplish each day; I always give myself 1 day of rest—Monday.

Q: What advice or inspiration would you like to share with other PAH patients?

Karen, living with PAH: Plan your life. Spend time doing something that you love, something that gives you joy, whether painting, reading a good book, or spending time on the phone with a friend.

Mike, living with PAH: The best advice I can give to someone living with PAH is to be your own advocate. No one knows better than you what you need. Speak up and get the help you need. Seek out a PAH specialist to ensure you receive proper care.