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    Posted January 20, 2014 by
    Alpharetta, Georgia
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with a ghost

    I have a condition of the arteries called "Takayasu's Arteritis". There are various places in my body where the arteries are thick, for no good reason. This creates narrowing of the blood vessels and may show up as a high blood pressure. A major part of my aorta (largest blood vessel supplying blood to the lower extremities) is occluded. For a number of years I was treated for the only symptom that showed - high blood pressure. There was never an active inflammation (source of the occlusion or thickening) nor any other symptom. I follow-up annually with a cardiologist, a rheumatologist and a vascular surgeon to monitor the progress, if any, and effect of my condition.
    Two years ago my husband and I were considering getting pregnant even though we were advised against it. The advice came from specialists that I had been seeing and was based on the fact that there is no statistical data that would show how a woman in her mid-30s with Takayasu's would be able to successfully sustain a pregnancy and carry it to term. There is practically no study of this condition other than one published paper that is referred to by specialists all over the world.
    Because we wanted to prepare for the pregnancy, I set up a visit with our cardiologist to get the necessary A-OK to proceed. He suggested I take a stress test since the last one I had taken was over 3 years ago. I failed the stress test. He then had me undergo a CT Angio of the heart and based on the imaging had me scheduled for an angiography. The arteritis had affected my coronary artery and my left main was 99% blocked, my heart was functioning on only 1% blood flow for don't know how long. During the procedure, I went into cardiac arrest and had to be given CPR and revived. The doctors then took an emergency decision and did an angioplasty. That was two years ago. Today I am living a healthy life with my husband but there are still unanswered questions. Was my coronary artery always affected, just like the aorta, but it was never detected until the failed stress test? Or was the coronary getting affected a new development since my last stress test 3 years ago? Will the disease affect any place else? What about the uterine arteries? Will I able to carry and sustain a pregnancy to term?
    The medications that I have to be on because of the stent in my heart do not work well with pregnancy and given that I am 36 I may not have a lot of time to change medications, monitor the effects and then attempt to get pregnant. Even if I do, there is the risk of the condition flaring up because of the hormonal changes. Also, with the existing block in the aorta, will my body be able to satisfy the extra demand for blood flow to the uterus?
    A lot of unknown unknowns and not even the best doctors have the answers. By now, I know better than to even ask these questions. I am living with a ghost, don't know where it might show up next, don't know how or when. There's no prognosis of the condition. I am good as long as I'm symptom-free.
    Sometimes I wish the block in my coronary was due to cholesterol or something easy and identifiable and like that. But no. Whether there could be more blocks like that is another unknown.
    The hardest part for me is having to deal with the fact that a normal pregnancy is not possible for me. I never had symptoms other than high blood pressure but I know that this is a life-style condition that just needs to be monitored and managed as when something shows up.
    #raredisease #lifestyle #Takayasus
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