Personal Stories: Karen's Husband's Story

My husband (who has Marfans) suffered an aortic dissection in January, 2004. After a week stay, he came home and went back to work. I saw this site back in January but was so freaked out, I could barely stand to read stories from other people at that time.

To say I was depressed and stunned and mad as hell is an understatement. After a lot of similar experiences to those I have read here (fatigue, leg circulation problems, getting used to the new meds, etc), he just got back the results from his latest CT - the dissection is no bigger. However, his cardiologist still thinks a graft is the next step, which I found surprising (and upsetting all over again) since I thought the plan would be to treat this with medication for as long as possible.

I was under the impression that if the meds kept his BP low and his dissection did not increase, that we would live with this until something seemed worse. The surgery is elective and I am very curious to know what people would do in our place. My hubbie is due to see a cardiac surgeon on Monday to get his opinion. We live in a good area of the country (Chicago) for this type of care, but if he undertakes this surgery, we understand there is a risk of dying or permanent paralysis and why would you risk these horrible options if it absolutely required.

There doesn't seem to be a lot of knowledge of the long-term prognosis for just staying on meds versus the surgery. I think one of the greatest risks in the world is simply entering a hospital for any reason. However, my first goal is to keep my husband as healthy as possible, obviously.

I am also unsure how to find the very best doctor there is with experience in performing these types of operations, especially on Marfans patients. Any recommendations or recommendations on how to do this research would be great. We don't have a lot of friends who have ANYTHING like this to ask.

Thank you for any recommendations. It's nice to know we're not alone in dealing with this

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