Welcome to my roller coaster - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Welcome to my roller coaster

jetjetjet profile image
5 Replies

Blood gone wild again --Dc {PCP } wants me back on the Enoxaparin 2 shots a day 75 mls --- today -tomorrow --and Thursday --

Warfarin -- 10 mls tonight--7.5 weds---5 on Thurs.--retest Friday ---- i guess he is finally getting it that i can't be doing this testing every week .

in the past i have gone from a 2.4 on a Tuesday to a 9.1 on Thursday .

i found an article that was in some of the info that Mary sent me -- this Dc. in Australia { i think } spoke of people that are hyper and the effects of the body;s metabolism and the warfarin . and take into effect i am APS triple positive with 26 Dia. problems. me body goes hay wire . and it can do it in as little as 3 days.

i have been battling with them since 9/1/09 on this very thing.{ just had my anniversary } --- Horray -- now maybe they will listen-- the emotional roller coaster they put me threw really is the culprit. and when one thing goes off the rest usually follows if i don't catch it.------ 0 well that's it for now -- next step the E.R.-----

Casey knows that i am having a big problem -- he is after me -- i can't move with out him at my heels-- he knows dad is in trouble -God love him.

just ride it out I guess -- waiting for confirmation from PCP office -- i have 70 syringes of the stuff 30 outdated. $1100 dollars a shot . is what the insurance company charges !!!!!

I have 40 mls and 120 mls syringes.

after my surgery i used 120 mls a day for 9 weeks so they could revisit my protein S and C as they were out of sight , but you can't check them while you are on the Warfarin so after the bridging for the surgery they kept me on it for 9 weeks total- 7 after the bridging. well got to E mail Dc Meg with the wonderful news :-) :-) :-)

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jetjetjet
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5 Replies
MaryF profile image
MaryFAdministrator

Hang on in there, you will come out again on top as usual! MaryF

jetjetjet profile image
jetjetjet in reply to MaryF

Thanks for the confidence-- i can use it

Lure2 profile image
Lure2

Hi there,

I agree with Mary who is moving her house at the moment.

Hang on!!!!!

Love from Kerstin to you and Casey

jetjetjet profile image
jetjetjet in reply to Lure2

Thanks my friend-- how are you doing- will feel like a pin cushion by Friday !!! so glad to hear from you . life pretty hectic right now..lets see what hapens//

Lure2 profile image
Lure2

Hi jetjetjet,

I am fine now. I had a little roller coaster last week when I was coughing with fever Not like yours!!!

Keep fighting. I can only wish you GOOD LUCK and give a hugh to Casey from me. Hope he wags his tail for me.

Your friend Kerstin

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