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Coping with the Diagnosis
The detection of aortic disease is often a complete surprise to many patients and their families. For others, with family members who have already been diagnosed, it confirms that the condition is present in them also. Regardless of your situation, it is normal to feel afraid and overwhelmed. Gaining knowledge and finding aortic disease expertise to help you are the first steps toward replacing fear with confidence and confusion with the treatment plan that is right for you.
Today more than ever before, there are advanced, life-saving medical and surgical treatment options for aortic disease. The information on these web pages, including Frequently Asked Questions based on real-life experiences, may be especially helpful in explaining those options to you. The Aortic Disease section has a simple diagram of the aorta, as well as descriptions of aortic aneurysm and dissection to help in understanding your diagnosis. You may also review the Marfan syndrome and Bicuspid Aortic Disease sections for additional information if you have been diagnosed with one of those conditions.
At first it may be difficult for you and your loved ones to read and absorb information. The diagnosis of aortic disease, like many other serious conditions, brings many questions about its effect on your life. While not fully understanding what it is, you wonder how dangerous this condition is and what the long-term effects are. It is also very typical, due to the absence of pain or other symptoms, to deny that anything could be wrong. At the same time that you are experiencing these emotions and asking these questions, you must make important decisions about finding the help you need.
The Thoracic Aortic Surgery Program at Cedars-Sinai is includes a liaison who works with our patients and families. Whether you are a patient or not, all questions are welcome.
There are a few basic questions that focus on the most important points about your condition, and the answers are important to both you and the aortic experts that will care for you, regardless of where you seek treatment. Typically, this information is given to you with your diagnosis. Your family medical history may also provide important clues regarding your own condition. If you choose to contact us by e-mail, including answers to the following questions is helpful. This is also the type of information that will be discussed in a phone conversation with you.
- Have you been told that you have an aneurysm or dilated aorta? Where is the aneurysm or aortic enlargement located?
- How big is the aneurysm or enlargement? (The size is given in centimeters. There are 2.54 cm in one inch.)
- Do you have any relatives who have or had an aneurysm?
- Do you know of any close relative that died suddenly? Was the cause of death considered to be heart related?
- Have you been told that you have a heart murmur or any problems with the valves of your heart? If so, do you know which valve or valves?
Family Screening for Aortic Disease
Those who are unaware of the presence of aortic disease are vulnerable to life-threatening emergency situations, including aortic dissection and rupture. In contrast, lives are saved when aortic illness is identified early and treatment (e.g., effective medical therapy, ongoing monitoring, lifestyle modifications and elective surgery) is begun.
Screening family members for aortic disease involves:
- Providing a detailed medical history of the individual and multiple generations of their family
- Undergoing diagnostic testing (including echocardiography and CT or MRI scans)
- Reviewing and understanding test results and medical history
- Planning appropriate ongoing monitoring, based on whether or not aortic enlargement is present
- Developing a treatment plan if heart valve conditions are detected (Bicuspid aortic valves are part of a broader-based connective tissue disorder.)
- Beginning appropriate systolic blood pressure control and planning for appropriately timed elective surgery (typically when the aneurysm reaches 4.5 cm) if signs of aortic dilation are found
If you have any questions about the screening process for aortic disease or would like to make an appointment for yourself or other family members, please contact the program coordinator.
Aortic Disease Treatment Summary
Lifelong medical treatment and lifestyle changes are necessary for those with aortic disease, both prior to and after aortic surgery. The following is a summary of some key points regarding the treatment of thoracic aortic disease. Please be sure to discuss the details of your individual situation with your doctor.
Blood Pressure Optimization
- Non-exercise systolic blood pressure (top number) generally should be maintained in a range of 105 to 110.
- Blood pressure medications should include long-acting beta blockers, long-acting ACE inhibitors, ARBs and a calcium channel blocker if needed. The addition of a low-dose diuretic may also be needed for those who retain water. These medicines can only be used if the patient is not allergic to them and there are no other contraindications.
- A home blood pressure machine will be needed to monitor your blood pressure on a daily basis. The digital type is simple and convenient to use. Please be sure the one you choose has an arm cuff. After purchasing it, check the accuracy of the machine by taking it to a doctor's office and having its readings compared with their equipment.
- Keep a daily record of your blood pressure, and fax or e-mail it to the Thoracic Aortic Surgery Program. An easy-to-use form will be provided for your convenience. Generally, monitoring blood pressure twice daily for a period of seven days will help fine tune the medication dosages and optimize blood pressure control. Once that goal is reached, you may follow up with your primary care physician for future medication adjustments.
Exercise and Diet
- Maintaining an active lifestyle, including cardiovascular exercise, is strongly recommended. Strenuous activities, including heavy weightlifting, should be avoided. Specific exercise recommendations should be discussed with the treating physician.
- Changing nutritional habits to a diet low in fat and carbohydrates and high in fiber and protein is recommended.
- Smoking is a risk factor for aortic disease and should be stopped immediately.
- Passive smoking is also harmful. It is important not to breathe any secondhand smoke.
- Systolic blood pressure can go as high as 300 from crack cocaine usage.
- Using crack cocaine, even once, puts you at risk of life-threatening aortic dissection (tearing) or rupture.
Blood Sugar Optimization
- Appropriate blood sugar levels are very important for the health of the cardiovascular system. Healing is quicker and the risk of infection is reduced after surgery when the blood sugar level is kept between 90 and 110.
- If you are a recently diagnosed diabetic (defined as having a blood sugar greater than 120 and an abnormal level of hemoglobin A1C), it is important to consult an endocrinologist. Purchasing a glucose monitoring device for home use will be necessary. By following an appropriate drug regimen along with balanced nutrition and daily exercise, the goal should be living a normal lifespan while maintaining an appropriate blood glucose level in the range of 90 to 110.
- The ratio of muscle to fat in the body is very important to overall health. The issue is not so much the weight of an individual as what makes up that weight. A heavy but muscular person is much healthier than a very thin individual who has lost their muscle as a result of unbalanced nutrition and inactivity.
- It is most desirable to have very little body fat. Both blood pressure and blood sugar levels are more easily controlled when the muscle-to-fat ratio is optimal. This will also strengthen the immune system and boost postsurgical healing, while at the same time decreasing the blood sugar level.
- A desirable muscle-to-fat ratio is best achieved by a balanced diet and a physically active lifestyle.
Dental and Oral Hygiene
- Aortic patients are at higher risk of endocarditis and graft infection if they develop a dental or gum infection.
- Conscientious daily dental and gum care is important to avoid infection.
- Regular dental checkups are very important, as is taking antibiotics prior to teeth cleaning and other dental work.
- Prior to surgery, echocardiography, MRI or CT with contrast are used to monitor the aorta. Generally, for enlargement less than 4 cm, testing will be done at 12-month intervals. Once the aorta reaches 4 cm, it is checked more frequently - every 6 months and in some cases every 3 months.
- Echocardiography is also used to evaluate the valves and chambers of the heart.
- A thallium test with adenosine may be used to evaluate the coronary arteries prior to surgery.
- Shortly after surgery, a baseline MRI or CT is taken. Followup tests are done on an annual basis and compared with this baseline.
Maintaining a Positive Outlook
- Expert, proactive treatment of aortic disease makes possible the continuation of happy, productive lives. Focusing on personal goals and enjoying hobbies and leisure activities with friends and family, as well as meeting the challenges of every day living, are all important aspects of normal life. When medical care, appropriate diet and exercise, and diagnostic monitoring are all in place, those with aortic disease may live active, fulfilling lives.
- Aortic disease in itself is no reason to become an invalid or "couch potato." Doing so is neither physically nor psychologically healthy. Assuming no other conditions are present that might restrict your activity, long periods of boredom, gloomy thoughts and inactivity should be avoided. Fully participating in your treatment plan, including the medical, dietary and exercise recommendations previously described, positively affirms that you, not the disease, are in control. You need not feel victimized by this condition. There is a great deal that you, in partnership with your healthcare professionals, can do to confidently live your life.
- When it is time for elective surgery, the most recent technical advances in aortic surgery are all available, aimed at achieving the best possible outcome. Following surgery, ongoing medical care, diet, lifestyle choices and a positive attitude are key factors in the pursuit of a normal, active life.
Screening Family Members
- All first-degree relatives (i.e., parents, siblings and children) of those with bicuspid aortic disease, Ehlers-Danlos syndrome, Marfan syndrome and other connective tissue disorders should have a complete aortic checkup. Since these conditions may skip generations, nephews and nieces, grandchildren, etc. should also be notified and have a complete aortic checkup.
- A family history of sudden heart-related death should be investigated. If autopsy reports are available, it will be possible to determine if the death occurred due to aortic disease (aortic rupture or aortic dissection). If no further information is available, all sudden heart deaths should be regarded with suspicion since aortic rupture or dissection may have occurred.