Hughes Syndrome Foundation

snow bound here in New Hampshire U.S.A.

jetjetjet
Posted by jetjetjet
9 Feb 2013
11 comments

Close to 2 ft, snow on ground now-- gotta get out and snow blow again-- much trouble with I.N.R 's doc.s watching me close another trip to E.R. fri day my rheumy ordered me to E.R. wanted plazma done -inr was 6.7 at 12;oo noon time 7.7 by 5:00 P.M. -E.R, doc did nothing about my problem rheumy's office is in a rage- gotta get blown out to tes blood they put me on vitamin K and want me monitored very closely - they don't know how i am going to react to the K as i have never had it before and i have a tendouscy to go to extreme's so i have to get to blood lab bye 11:00 this A.M. - let you know more as i can . not looking to good at this point. don't know if this is going to interferr with my surdery slated for the 6 th of March ????????????? O well gotta get to work _____________________ frosty the snow blowing fool :-) :-) :-)------------------------- jet

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11 comments

MaryF
MaryF Admin
9 Feb 2013
Hello.. that all sounds hectic to be happening with two ft of snow.. I hope you have some positive results, keep us posted and keep toasty and warm. Mary F x

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Manofmendip
Manofmendip Admin
9 Feb 2013
Hi Jet

It sounds like you may be a candidate for Heparin shots rather than Warfarin, if your INR is so unpredictable.

Best wishes.

Dave

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jetjetjet
jetjetjet
9 Feb 2013
last month i plumetted inr 1.1 so i started lov nox which i have plenty off -- right now we have a war going on bettween the hospitals - - the E.R. are the ones that are wrong -- and i'm not done with them by no means they ARE going to answer to there mismangement of my problem-- and i have Leb my hemo's and my main Dc. Chou on board with this. you mess with the bull you get the horn . Sheena once said that i must be a bear to deal with -- well they have angerd a grizzly--- this is far from over with the E.R doc's that didn't follow my speacialist direct orders- even after i told them that has to be done !!!!! E.R. doc asked why was i so ftrustrated with them ????? G you don't know ???? ou had 2 directives to follow and you choose to do nothing except wait and see what my inr does ????? i asked what they knew about APS -- answer nothing and i had all my document's right with me which they choose to ignore __--------------- so now i'm in this boat - it makes me so angery ////////////////// the briun jet

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MaryF
MaryF Admin
9 Feb 2013
Well you may be a cross big bear, but you are tame at times:







Mary F x

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APsnotFab
APsnotFab Admin
9 Feb 2013
This is my desktop screen as I kind of think that what he may be thinking sums me up!!

www.oodora.com/wp-content/u...

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APsnotFab
APsnotFab Admin
9 Feb 2013
I agree with Dave above it would seem that if the warfarin is causing problems with unstable INR that perhaps permanent Fragmin (low molecular Heparin) may be a better option for you to keep you stable. Just a thought.
You be careful in that snow, no throwing snowballs at the docs you dont like or ramming them with a sledge!!! :-D Thinking of you xx

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jetjetjet
jetjetjet
9 Feb 2013
Doc"s have addresed me staying on 120 mls of enoxaparin with both -rheumy and hemo -got together with me and because i'm aps and a triple positive they were concerned it wouldn't be enough-- i had asked about staying on with enox after the 7 weeks i was on it after my surgery in june of last year -- i needed to stay on it to test my protiens S and C because they were so elevated-and you can't test them while on warfarin-- i still have it as an emergency

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Kristina
Kristina
10 Feb 2013
Hey jet! We got 33 inches last official count. Apparently us and Farmington got worst ....

Hope you get your INR sorted soon.

Chilled out all day. Have a cold......

Surgery? The one we discussions?

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jetjetjet
jetjetjet
10 Feb 2013
Great likeness to the griz, accept i'm balding and a tad lighter, nose bit shorter , heigth about the same {not }- teeth not as many , breath could be the same ,diet - i'm a little on the lighter side -- but over all Mary great likeness !!!!Doc. on call at Leb -- wanted me not to drive to Leb in this blizzard we had- labs all closed as almost everything was. held warfarin dosages for thurs and friday - # 5 sat ---# 6 sunday -- test 1 st thing on mondat -- watch for all sign's of bleeding- bruising - eye sight and dizziness- numbness and or tingling in extremities- This Dc. had some new advise and quite a different aproach to my treatment ? not sure if i like it or not. will be talking to all my Dc's on monday morning. still not sure if this is going to delay surgery or not on the inguinial hernia- that surgeon want's it done as soon as possible-baring any compications of APS. i'll know more mid monday morning ------ Gentle Ben jet

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GinaD
GinaD
10 Feb 2013
Gentle,(when appropriate) Ben Jet,

Good luck. As I sit in my favorite chair in West (by God) Virginia I am amazed that someone from more civilized parts of the country is having more problems with ignorant, intransigent docs then I have down here in Appalachia! Feel free to share this email if you think the shame factor may push those ER docs in a more positive direction. Last time I ended up in an ER ( after I broke my leg) the first thing the attending did was phone my hematologist and get a run down from him.

(Did I tell you I live in West Virginia?)

Gina

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lisakay
lisakay
10 Feb 2013
How scary! I was at 14.4 this summer and with one vitamin k pill it dropped to 1.1 in less than 24 hours and my doctor was shocked by that...so yes, they do not know how vit.k will react. Everyone is different. Not fun...my body hurt, kidneys, everything!!!! Thinking of you and hoping they get this figured out!!

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