Living With Marfan Syndrom Is Not Easy But It Can Be Done!

Hello, my name is Yanira. I was first diagnosed w/ having Marfans at age 29 (in 2005). one day at home I developed a sudden sharp stabbing chest pain, radiating to my jaw and my left arm. I had no prior medical or family hx of any heart condition. In the ED of a near by hospital. I was initailly miss diagnosed. No existing medical conditions, no family hx. Dx was anxiety/ severe migrane ( I developed headache/blurred vision/nausea/vomitting and noninvasive cardiac test showned normal). I was then discharge home with Vicodin for pain. I waited out till next day still with pain and fullness in my chest, I was taken by car to the next near hospital (15 min in the freeway) I was then send to ct scan followed immediatelly with an Echo. my new diagnosis right carotid dissection with a thoracic aortic aneurysm. (arising from aortic valve to the aortic arch). I ended up going for open heart surgery (11 hours ordial due to complications during the process) I woke up with a mechanical valve, and aortic graft up to the arch. I'm not that tall (5ft^6in), I do have long  limbs, I'm slender, have minor scoliosis, but a genetic testing proved it. I Have Marfans. It took time to get adjusted to live with my condition, it precautions and daily beta blocker medications. I thought I was then clear. managing my medications and f/u with my doctors as often as needed was not enough. Just a week ago I had a sudden sharp, stabbing epigastric and upper back reaping  pain. I recognized the horrible pain,  I was taken by ambulance to the hospital. Diagnosis, yes It was an extension of type B dissection.(decending aorta). I considered my self lucky, why you may asked. The dissection stopped just before it could affect perfusion to any other vital organs perfusion. I'm Happy no Surgery at this time.  My doctors ended up increasing my blood pressure medication with more frequents f/u. I have learn to take day by day as it comes. I'm happy that I'm still able to tell my story. I have a positive outlook. I Know I'll be able to overcome this hump as well. This insult only makes me stronger in spirit and willingness to keep going.   I live with Marfans but Marfans doesn't not live me, it doen't define me. To all I send you my best wishes for an excellent good health. Keep up with all your f/u appointments.
bonito1 bonito1
Jun 12, 2012