RE: [FH] LILLIE! CRAZY (GOOD) UPDATE!
- This is a great way for all of us and esp Lillie to start the wkend.
Linda and the boys
Sent: Friday, October 01, 2004 4:38 PM
Subject: [FH] LILLIE! CRAZY (GOOD) UPDATE!
Hey everyone...we JUST got back, so this will be quick...
YOUR Good thoughts and PRAYERS have done some amazing things. I
think the Cardiologist was looking for ways to explain the very
EXTREME change in her condition. He is quick to say that she by all
means still has a heart condition, and is still calling it HCM...but
is questioning it at this point. I couldn't POSSIBLY reiterate how
exactly he explained it, but it has something to do with the
papillary muscle, and how part of it may look "2 headed", which could
be a possible deformity of some kind, and that could have made
something look like something else (great med terminolgy I grasped
here, sorry I was lost), and they are going to keep monitoring
it...but she's not due for another echo for 9 months.
The gist/translation I interpreted it to be, was that Lillie's
heart is AWESOME (but he is quick to add "today" but that could
change) , and it just doesn't seem possible that HCM could have been
the right diagnosis (POSSIBLY).
Now don't take this news TOO far, because she still needs to be on
her heart meds...BUT she is being taken off the Lasix in a couple of
days...but I need to monitor her breathing patterns to be sure that
she is okay off it. He said that should also decrease the chances of
her getting that awful constipation issue again. He also said it is
up to me whether or not to keep her on the aspirin every third day...
I will need to think about that one for a while...I am a bit scared
to change that. He said that her likelihood NOW (today) of a blood
clot is low (normally it is HIGH with HCM)...but to me, low is still
at risk, and she isn't having problems on it, so for now I am going
to keep her on that.
I think what we have here is a MIRACLE that defies conventional
explanation! And for that I THANK YOU for thinking of her! This
Cardiologist is also AMAZING! His med changes in January also played
a huge role in her present condition. He even said that her heart
looked better THIS time than even in January when we went there and
he was amazed by the change from the original x-rays and echo. I
wish he was closer to here.
I ran back to get a copy of the echo report, but the student was
the only one there, and he said he'd ask the Cardiologist when he got
back...so hopefully they'll mail that to me.
I may or may not be on the board tomorrow... The plan is to SLEEP
the entire day (since Lillie won't allow sleep at night at ALL these
days, with all her new found energy). I have been SO SO chronically
fatigued, I have been REALLY doing weird things (ie: typing
completely opposite letters from what I thought I was, putting
grocery cart back in the return cage (and leaving groceries)), and
complete and utter exhaustion to the point of fighting to keep my
eyes open in classes. ....Nevermind intense headaches! Need.
Sleep. Now. zzzzzzzzzzzzzzzzzzzzzzzzz
Lillie's photos are the 1st album in the "photos" link at the left....
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