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