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 medicines that may improve pulmonary arterial hypertension symptoms.
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.
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.
VENTAVIS has not been studied in all PAH patient populations.
The study showing VENTAVIS is effective included mainly patients with New York Heart Association (NYHA) Functional Class III-IV PAH (WHO Group 1). In these patients, PAH was caused by unidentified or hereditary factors (65%) or connective tissue diseases (23%).1
What lifestyle changes could I make?
Wondering how you can make adapting to living 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 make a difference 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 salt intake, is part of a heart-healthy diet.7 Always check with your healthcare provider 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 provider 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 may also 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 provider, 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 provider if there are any limitations or other considerations.
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 doctors 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.
What is VENTAVIS?
VENTAVIS® (iloprost) Inhalation Solution is a prescription medicine used to treat adults with certain kinds of severe pulmonary arterial hypertension (PAH), a condition in which blood pressure is too high in the blood vessels between the heart and the lungs. VENTAVIS may improve your ability to exercise and your symptoms for a short time by lowering your blood pressure and opening up the blood vessels in your lungs.
The study showing VENTAVIS is effective included mainly patients with NYHA Functional Class III-IV PAH. In these patients, PAH was caused by unidentified or hereditary factors (65%) or connective tissue diseases (23%).
VENTAVIS has not been studied in children younger than 18 years old.
What should I tell my doctor before taking VENTAVIS?
VENTAVIS may not be right for you. Before taking VENTAVIS, tell your doctor about all of your medical conditions, including if you:
- have liver or kidney problems. Your doctor may need to give you a lower dose of VENTAVIS.
- are pregnant, or plan to become pregnant. It is not known if VENTAVIS can harm your unborn baby. VENTAVIS should only be used during pregnancy if the benefit to you is worth the possible risk to your baby.
- are breast-feeding. It is not known if VENTAVIS passes into your breast milk. You and your doctor should decide if you will take VENTAVIS or breast feed.
Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
VENTAVIS and other medicines may affect each other causing side effects. VENTAVIS may affect the way other medicines work, and other medicines may affect how VENTAVIS works.
Especially tell your doctor if you take:
- medicines used to treat high blood pressure or heart problems
- medicines that lessen blood clotting (warfarin, Coumadin, Jantoven)
Know the medicines you take. Keep a list of your medicines and show it to your doctor and pharmacist when you get a new medicine.
How should I take VENTAVIS?
- Take VENTAVIS exactly as your doctor tells you to take it. Your doctor may change your dose if needed.
- You should not take VENTAVIS more than every 2 hours. The benefits of VENTAVIS may not last 2 hours, so you may adjust the times that you use it to cover planned activities.
- Do not drink VENTAVIS.
- Do not let VENTAVIS solution come into contact with your skin or eyes. If it does, rinse your skin or eyes with water right away.
- Do not allow other people to be exposed to VENTAVIS while you are breathing it, especially babies and pregnant women.
- If you take too much VENTAVIS, you may have a headache, red face, dizziness, nausea, vomiting and diarrhea. If this happens stop taking VENTAVIS. If your symptoms do not go away, call your doctor or get emergency help right away.
What are the possible side effects of VENTAVIS?
VENTAVIS may cause side effects, including feeling dizzy, lightheaded and faint. If you have any of these side effects, you should stand up slowly when you get out of chairs or bed. Tell your doctor if your fainting gets worse during treatment with VENTAVIS. Your doctor may need to change your dose or your treatment.
Do not drive a car or operate any tools or machines if dizziness or fainting from low blood pressure is a problem for you.
You may have trouble breathing after taking VENTAVIS because it may cause the muscles around your airway to tighten (bronchospasm). Get emergency help right away if you have trouble breathing.
Other important side effects of VENTAVIS include:
- red face (flushing)
- increased cough
- low blood pressure
- spasm of your jaw muscles that makes it hard to open your mouth
Talk to your doctor if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of VENTAVIS. For more information, ask your doctor or pharmacist.
Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please see full Prescribing Information.