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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What types of thing can you just not do or have if you've been diagnosed with PAH.

A myPHteam Member asked a question 💭
Olympia, WA
January 29
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A myPHteam Member

A lot of water. Hot steamy showers. Dancing for long periods of time. Just to name a few. It's a lifestyle change for real. I guess due to other conditions, I have learned to adapt to lifestyle changes. But I am okay with all the adjustments, because that means I am still alive with God's grace and mercy. Thank you Jesus.

January 29
A myPHteam Member

In addition to the above...NO CAFFEINE! That means no chocolate, no cola, no tea, no coffee. I do admit I will ocassionally cheat with a little chocolate.

Also, there is probably a fluid intake maximum for her. Mine is 2 liters. Some people have their limit set at 1.5 liters...some might be set higher than 2.

Additionally, it's advisable to weigh yourself every day. Her doctor will be specific for her, but I have to call my doctors if I have a weight gain of over 2 pounds in a 2 day period. It hasn't happened with me for a long time but the last time it did, my furosemide dosage was adjusted.

January 29
myPHteam

What activities or things should be avoided with a PAH diagnosis?

Living with PAH does require some adjustments, but it's about managing carefully rather than completely avoiding everything. Here are key considerations:

Dietary Restrictions
- Limit salt and sodium intake, as they can worsen hypertension and cause fluid Show Full Answer

What activities or things should be avoided with a PAH diagnosis?

Living with PAH does require some adjustments, but it's about managing carefully rather than completely avoiding everything. Here are key considerations:

Dietary Restrictions:
- Limit salt and sodium intake, as they can worsen hypertension and cause fluid retention and swelling
- Avoid processed foods where salt is often hidden
- Focus on a diet low in meat and fat, high in fresh fruits, vegetables, and grains

Medication Cautions:
- Don't take over-the-counter decongestants containing pseudoephedrine or phenylephrine without consulting your doctor, as they can interact with PAH medications and worsen symptoms
- Always check with your doctor before taking any new medications, including cough medicines

Physical Activity:
- Strenuous exercise may need to be modified or avoided depending on your symptoms
- You'll likely need to transition from more intense activities to gentler forms of exercise
- Work with your healthcare team to find appropriate exercise levels that don't cause overexertion, shortness of breath, or chest pain

Pregnancy:
- Pregnancy with PAH presents significant challenges and high maternal mortality risks
- This requires careful discussion with specialists who understand PAH-related pregnancy risks The key is working closely with your healthcare team to understand your specific limitations. A myPHteam member shared: "Fifteen minutes was the max at the gym." Everyone's experience is different, so your doctor can help you determine what's safe for your individual situation.

Consider asking for referrals to specialists like dietitians, physical therapists, or cardiac rehabilitation programs that can help you navigate these lifestyle adjustments while maintaining the best quality of life possible.

January 29
A myPHteam Member

Amen

February 11

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