If you are diagnosed with Eisenmenger syndrome, you'll be referred to a heart specialist (cardiologist). It's important for you to find a cardiologist who has experience treating people who have congenital heart defects.
The symptoms of Eisenmenger syndrome, such as blue or grayish skin color (cyanosis) and shortness of breath, are serious. Even if you haven't been diagnosed with a heart defect previously, these symptoms require prompt medical attention.
Because Eisenmenger syndrome is a complicated condition and because there's often a lot to discuss, it's a good idea to be prepared for your appointment. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
- Make note of any previous heart treatments. Because Eisenmenger syndrome most often develops as a complication of a heart defect, it's important that your doctor knows about any medications you've taken or surgeries or procedures you've had if you've been previously diagnosed with a heart defect.
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask whether there's anything you need to do in advance, such as fill out forms or restrict your diet. For some imaging tests, for example, you may need to fast for a period of time beforehand.
- Write down any symptoms you're experiencing, including any that may seem unrelated to Eisenmenger syndrome. Try to recall when they began. Be specific, such as days, weeks, months, and try to avoid vague terms such as "some time ago."
- Write down key personal information, including a family history of heart defects, pulmonary hypertension, lung disease, heart disease, stroke, high blood pressure or diabetes, and any major stresses or recent life changes.
- Make a list of all medications, as well as any vitamins or supplements that you're taking. Also, be sure to tell your doctor if you've recently stopped taking any medications.
- Take a family member or friend along, if possible. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For Eisenmenger syndrome, some basic questions to ask your doctor include:
- What are other possible causes for my symptoms or condition?
- What kinds of tests will I need?
- What treatment will I need?
- What's an appropriate level of physical activity?
- How often should I be screened for changes in my condition?
- What are the alternatives to the primary approach that you're suggesting?
- I have other health conditions. How can I best manage them together?
- Are there any restrictions that I need to follow?
- Could you recommend a specialist who has experience treating Eisenmenger syndrome?
- Is there a generic alternative to the medicine you're prescribing?
- Are there any brochures or other printed material that I can take home with me? What websites do you recommend?
In addition to the questions you've prepared to ask your doctor, don't hesitate to ask questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask the following questions:
- Have you previously been diagnosed with a heart defect or pulmonary hypertension? If so, what treatments did you have for your condition?
- Has one of your doctors ever said you had a heart murmur, but didn't pursue a diagnosis? If so, when was this?
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?