When you have pulmonary arterial hypertension, your doctors will prescribe medicines and other therapies to treat your condition. But your role in your care is just as important. You’ll need to keep track of how you’re feeling so your doctor can make sure your treatment is right for you.
You may need to make changes in your diet, exercise, and activity. It’s important to follow this advice so you can ease your symptoms and feel as good as possible every day.
The first step is to learn all you can about your PAH and what is and isn’t normal for you.
A Symptom Diary Can Help
Start by keeping track of your symptoms in a diary or journal. It can be hard to notice when things change or gradually get worse. When you write down how you feel every day, you create a record you can review and share with your doctors. This way, you don’t have to rely on your memory to recall when you felt dizzy, short of breath, or overly tired.
Note the symptom, the day, and the time you noticed it. A simple pen-and-paper system is fine, or you can keep track on your computer or smartphone. Many apps that help you keep tabs on your symptoms are free or low-cost.
It’s also a good idea to keep track of your weight. If you quickly put on some pounds (2 or more pounds in a day or 5 or more in a week), it could mean your PAH is getting worse. Weigh yourself at the same time every day and write the number down.
However you do your diary, bring the information when you see your doctors.
Also, know what symptoms shouldn’t wait for your next appointment. For example, if you have chest pain, fainting, or any problems that get worse, be sure to call the doctor.
Take Charge of Your PAH
Get your records. Ask for copies of your medical records and tests, including X-rays, CT and MRI scans, blood tests, and heart tests. Keep everything in a binder, and take it with you to your medical appointments. You might want to put the most recent information on top so the doctor can easily see what’s happening. Because you may have more than one doctor, the binder is a good way for everyone involved to keep track of what’s going on with your health.
Know your medication. Learn the names of your medicines and the schedule for when you should take them. Make a list and keep a copy with you at all times. Be sure to include those you take regularly and the ones you take “as needed.” If you use oxygen, add it to the list, as well as your dose and flow rate.
Some people keep an emergency phone list with them, too. It should include phone numbers for your doctors and pharmacy, and for the ambulance company that serves your area.
Know what to expect. Your doctor may ask you to take an exercise test to find out how well your treatment is working. One test measures how far you can walk in 6 minutes. Another checks how well your lungs and heart work while you use a treadmill or stationary bicycle. When you get this test, ask your doctor what the results mean for you.
Ask questions. Keep a list of them for your doctor and bring it to your next appointment. It’s easy to forget what you wanted to ask, especially if your time with the doctor is short.
When the doctor gives you a new prescription, take a good look at it. Ask what the medicine is for and how long you'll take it. Ask what to do if you miss a dose -- should you double up, or is it better to change your schedule? This can help you avoid mistakes with your medicines.
Ask your doctor if a medical ID bracelet is a good idea for you. It can quickly let an emergency responder or doctor know that you have PAH and what medicines you take.
Pulmonary arterial hypertension can be complex. When you’re well-informed, you can better manage your condition.