Anyone with Thrombotic Thrombocytopenic Purpura? Posted: 02-21-08 21:36pm
I have been in remission for nearly ten
years now. I was diagnosed when I was 25
years old after a period of stress(I had
left my husband). I was hospitalized for a
month, given plasmapheresis, vincristine,
steroids, and blood transfusions.
Recently it was discovered that I have a
blood clot behind my left eye. I'm going
back to see my hematologist because as we
know the TTP can cause clotting as well as
bleeding.
I hope it's not the TTP again because I
didn't respond well to the treatment when
I had it last time and I can't imagine
what it will be like this time.
I'd appreciate any thoughts.
Sharon
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^Serenity^
Moderator
Joined: 02 Dec 2007 Posts: 1189 Location: ,
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Thanked:108
Posted: 03-01-08 19:38pm
Hi
I don't have any thoughts on what is
happening but I wanted to let you know
I've read your post a few times and
thought I'd let you know I'm thinking
about you.
The unknown with our health is very scary,
I am going through a few problems myself
and my son, we both see a hematologist. If
you need to talk I'm here.
How are you doing? Have you been to the
hematologist yet?
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HarryPotterfan1972
New User, Becoming EHEALTHy
Joined: 21 Feb 2008 Posts: 4
Posted: 03-01-08 20:03pm
I saw the hematologist this past
wednesday. He ordered about 20 tests to
check my clotting factors and they took 9
tubes of blood. My right leg feels hot
inside, if that makes sense, so I'm a bit
worried about that. I'm going to let him
know about that when I talk to him.
Other than that, it's just a waiting game
unfortunately. It's really scary.
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^Serenity^
Moderator
Joined: 02 Dec 2007 Posts: 1189 Location: ,
Thanks: 104
Thanked:108
Posted: 03-02-08 10:20am
Waiting is always the hardest part, it
seems like we do a lot of that when we are
sick. I hate getting so much blood drawn
every time we go but they need it to help
get answer.
And yes it is scary.
Keep posting and I'm here for you.
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snazzaro
New User, Becoming EHEALTHy
Joined: 02 Feb 2008 Posts: 2
TTPer here Posted: 03-02-08 19:45pm
I am 27 years old and was diagnosed with
TTP last July. I was in the hospital for 2
weeks and also received plasma exchanges,
platelets, high doses of steroids, and
several blood transfusions. I was able to
go back to work at the beginning of
December but here lately I have been
thinking that maybe the TTP has come back.
I have a headache that never seems to go
away and have a general feeling of
something just isn't right. I am so scared
that it might be coming back. I don't know
if I could handle going through all that
again. So you haven't had a relapse? You
only had the one episode when you were 25?
That is awesome!
Keep us updated. I really hope that the
TTP isn't back.
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HarryPotterfan1972
New User, Becoming EHEALTHy
Joined: 21 Feb 2008 Posts: 4
Posted: 03-13-08 16:54pm
Well, I got a diagnosis. It's not the TTP
but it's as scary. I have lupus
anticoagulants. I saw my hematologist
yesterday and that is what he told me. He
wasn't sure what he wanted to do about it
until he spoke with my retina specialist.
Well, today I had a voice mail on my cell
phone telling me to call my hematologist.
They are going to put me on some meds, but
just what I don't know yet. My
hematologist is going to be calling me
tomorrow morning to talk to me.
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