Personal Stories: Ricky Flanders
My name is Rick Flanders, am 34 yrs old,
of Asian heritage and I live in the San Francisco bay area. I stumbled
upon your website and found it helpful. I was recently diagnosed by a
cardiologist after an echocardiogram that my aortic root (ascending
aorta) is severely dilated at 6.2 cm. I just had an MRA a couple of days
ago and am awaiting the results. At this stage, I'm trying to figure out
why I would have this condition as I am not marfanoid.
My primary care
doctor was concerned that I may have Ehlers Danlos since I am double
jointed in my fingers and elbows. But I don't have many of the
characteristics of Ehlers Danlos (especially type IV), which are
traslucent skin, big eyes, no ear lobes, and easily bruised. With Ehlers
Danlos, of course, the risk of surgery is much much greater.
I am curious, did any doctor figure out what the cause of your
condition was? Also, what were your symptoms before you actually had to
go to the ER and had your ascending aorta grafted? Needless to say, I am
very scared and anxious about all this.
It's been a long time since I last contacted you, and so much has
happened. Anyways, I've been meaning to contact you for a while now, but
this is the first time in a couple of months I've been able to get
around to getting back in touch with you.
Well, thanks very much to you and your website (btw, I see that
you've added so much to your website since I first stumbled across it -
that's awesome!), David Liang, Sunny, Julie and Dr. Miller have been
taking good care of me. Due to my HMO problem, David saw me gratis for
the first visit in May and did an echocardiogram on me.
He and Sunny saw me after hours in their clinic and stayed with me
for almost 3 hours after, analyzing me, informing me and answering all
my questions. What a dedicated doctor and staff! The echo unfortunately
confirmed that my ascending aorta (at the root) was around 6.3 cm. My
hopes for a false reading from my previous tests at a different
cardiology office was deflated. David and Sunny was so nice and caring
that they helped me a lot to alleviate my fears.
My next step was to get my HMO to approve me to have the repair
surgery done by Craig Miller. And boy, this was such a nightmarish
experience that I don't ever wasn't to go thru again. After being jerked
around and denied a couple of times by the HMO, and many frustrating
phone calls and visits with my network physicians and cardiothoracic
surgeon, I finally got the HMO to approve me to get the surgery done by
The basis for my requirement to get the surgery done at Stanford was
because Dr. Miller is one of the most experienced surgeons in the world
that can save the heart valves. By the way, Dr. Miller is just as nice
and personable and down to earth as David and his staff are.
Well, I had my surgery on July 20, and am now recovering well at
home. The surgery was 9 hours but Dr. Miller was able to save my valves
and he said they look good and should last me a long time. I stayed in
the hospital until July 25. I must say that the first month of recovery
was not a pleasant thing to go through. My chest hurt every time I
cough, turn, get up, laid down, etc. The worst was probably my throat
(or was it my tongue - I couldn't really tell) hurt badly from the tube
the breathing tube.
This pain lasted almost 4 weeks after the surgery! But once that
healed, I was able to eat better, and in turn, I had more energy to walk
more and more. I am up to walking between 2.5 to 3 miles a day, and
actually today walked over 7 miles straight!
I went to see Dr. Miller yesterday for my follow up visit and he said
I looked and my heart sounded good. He gave me the go ahead to return to
work anytime I wanted to. I am probably going to start work again the
first week of October. My chest still has a little discomfort, both from
the incision (lower part) and the sternum not yet fully healed, but
other than that I feel great.
The biggest thing is the relief that I
have from not having to worry about a dissection anymore and the anxiety
that I had before the operation. Dr. Miller is very sure that I do not
have Marfan's and David ruled out Ehler's Danhlos the first time he saw
me. The weird thing is that my oldest brother who is five years older
than me, has an aortic root aneurysm also.
His aneurysm is asymmetrical in shape and is surgical at this point,
measuring 6.2 at the largest points. He too is now seeing David and will
have the surgery done by Dr. Miller on Sept. 30. Dr. Miller thinks we
have a connective tissue mutated gene, that was probably inherited from
our father. We can't be sure what his aorta looked like since he passed
away from cancer at the age of 37. At this point, the rest of both my
and my brother's aorta looks normal, but of course, we'll have an echo
done every year.
Brian, I just wanted to thank you so much for if not saving my life,
then at least giving me a chance to have a better quality of life with
the valve saving surgical repair- by referring me to David and the folks
at Stanford. I truly believe that I stumbled upon your website not just
by happen chance, but rather by divine intervention. God has blessed me
in so many ways, and I'm looking forward to not waste any part of the
rest of my life away. You are doing great work with your website so
please keep it up. You're welcome to use any part of my story to add to
your site, as a fellow aortic dissection/aneurysm survivor, I too would
like to help others if I can.
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