Living with PAH*
If you're like most newly diagnosed pulmonary arterial hypertension (PAH)* patients, you may be overwhelmed. Feelings of shock or uncertainty are common. At the same time, you probably have questions about your disease.
It is hard for physicians to predict how your disease will progress in the long run. Despite this, in the last decade a great deal has changed for the better in the treatment arena. There are medications that may improve some of the symptoms of PAH*.
To empower yourself, it is important that you understand your disease and how to live with it. You may need to adapt in a number of ways by making lifestyle changes and adjustments. The best way to get answers about managing PAH* is to talk with your healthcare team. Your healthcare team is most familiar with your medical case history, and they are most qualified to give you the best advice.
What lifestyle changes could I make?
Wondering how you can adapt and live with PAH* a little easier? Your healthcare team is most familiar with your case history and qualified to give you the best advice. You may also want to consider some of these small changes. They may add up to big differences in your day-to-day life.
1. Keep a journal. All you need is a notebook and a pen to help monitor your progress. The details you record about your disease may help your healthcare team give you the best possible support and advice. You may want to write down:
- Lists of things to do, such as phone calls to make or household tasks
- Symptoms you have each day and their severity
- Questions for your healthcare team and then the answers you receive for future reference
- Dates of medical appointments
- Outcome of your appointments for future reference
2. Watch your diet. It's important that you eat a wholesome diet and get proper nutrition to keep your energy levels up. Eating fresh fruits and vegetables, whole-grain foods, and lean chicken and fish while limiting fatty foods and keeping sodium to less than 1,500 mg a day is part of a heart-healthy diet.8 Always check with your healthcare professional before changing any part of your routine.
3. Look into appropriate physical activity. While certain physical activities may put too much strain on the heart and lungs, many patients benefit from some level of physical activity. Talk to your healthcare professional about whether starting or continuing an exercise program is right for you.
4. Quit smoking. People with PAH* should not smoke because it may contribute to breathing difficulties caused by PAH*. Smoking also may cause the already narrowed blood vessels in your lungs to tighten even more—placing more stress on your heart.
5. Get support. There is a network of support available to you that includes medical professionals, family, caregivers, and patients like yourself. Communicating with and relating to others who are "in your shoes" may help you cope better with your disease. Take advantage of support networks.
6. Learn about working with PAH*. Having PAH* may not mean you have to quit your job. Many people continue their careers and are productive employees. Still, your disease may affect your ability to perform your job, so talk with your healthcare professional, monitor your on-the-job performance, and be sure to discuss with your employer any changes that need to be made.
7. Travel safely. Traveling can sometimes be challenging. Before traveling, check with your healthcare team and discuss any changes you might have to make to your routine. Consider these helpful suggestions:
- Ask your healthcare team for a letter explaining your medical condition and treatment plan, and have the letter handy in case of an emergency.
- Bring a cell phone and provide any travel companions with emergency instructions and phone numbers.
- When flying, check with the airline to see if it requires advance notice if you wish to bring oxygen. Try to inform them of your condition well in advance. And ask your healthcare team if you should use supplemental oxygen while waiting in the airport.
- Altitude affects air density and may result in a more difficult breathing situation. Find out ahead of time if your destination is at a much higher altitude than your home.
8. Talk to your doctor about your sex life. Ask your healthcare professional if there are any limitations. Always use contraceptives, since pregnancy can be very dangerous and some medications like Tracleer® (bosentan) can cause birth defects.
9. Enjoy each day. Deal with your reality as it unfolds, and look for the pleasure in every little thing.
10. Get involved. Be proactive and come to every doctor's visit prepared to discuss your questions, concerns, side effects, and progress. Share your feelings and frustrations. Make a list, and don't be embarrassed to ask anything and everything.
Also, be sure to tell your healthcare team what you are currently able to do. This can help them determine your functional class and better manage your treatment.
Because it can be a complicated disease, lifestyle changes may differ from one person to the next. Always check with your healthcare team before changing any part of your routine.
Tracleer has not been studied in all PAH* patient populations.
Studies showing Tracleer is effective included mainly people with mild to severe symptoms (called NYHA Functional Class II-IV). In these patients, PAH* was caused by: unknown causes (called idiopathic), hereditary causes (a family history), connective tissue diseases (like scleroderma or lupus), or being born with a hole in the heart between the left and the right sides.