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trouble with INR...help


Guest madison2021

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Guest madison2021

:rolleyes:

hi im a 21 yr old female......this november 12 i was diaqgnosed with a severe dvt in my right leg which had started above the knee and was to my lower stomach..i was put in the hosptial for tons of tests.....my INR was under control...but then about 1 mth later it went out of control and my doctor didnt do anything about it and i had to get the inahep shots again to get it under control

january i had a check up with specialst and a doppler was done and it showed it had grown in the time my blood got out of control...so now it starts at bottom of right foot and to the bottom of my breasts.....abotu 2 wks ago my blood get low again

i was wondering if anyone has ever had this much trouble with there INR???

right now i am taking 7mg of coumadin again and getting blood checked once a week..but my foot is swoolen again so i bet its low again

i need some info on y this is happening so if anyone could help me out it would be appreicated

thanxs

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  • 7 months later...

Hi Madison,

My name is Jackie and I was in the hospital last October for clots in my lung. No one knows why I got them (had them 20 years ago and now all of a sudden got them again) Was told I'd be on Coumadin for the rest of my life I'm 52. Up until about three months ago my INR s have been pretty stable but just like you they are all over the place. One week it's 4.7 the next week it's 1.2. Anyway I went to a hemotologist spelled wrong) and he said after some blood work that I tested postive for some form of Lupus. I was in the hospital last week for 3 days with what they suspected was another clot in my lungs. My hemotologist saw me while I was in the hospital and he order more blood work should take about two weeks for results, but said he wasn't confident the results would be accurate due to the fact I'm on Coumadin and I guess it messes up the testing. I guess I wanted to respond to you as I've been pretty freaked out about my INR's and feel kinda lost as there really is not a web-site for people like us to talk to one another about what is going through our heads, the worry, stress etc. This site is really for folks that have Protein S thats why you won't get alot of people responding to your request for information. This whole situation is pretty scary for me and I'm sure your stressing out also. I stopped drinking cranberry juice as I read that can effect your numbers, I use to drink tons of it. Know one can give me a direct answer as to why my numbers are all over the place either it's quite frustrating.I don't know if any of this will help you I can only suggest being diligent in getting your INR done my doctor will tell me go in two weeks when I'm real low or real high but I go earlier then when he tells me to. As crazy as it sounds I can tell when I'm to low or high I feel different thats why I went to the hospital last week and sure enough I was positive with another clot. Dont be afraid to be aggresive and assertive regarding your care Madison, I've come to realize these Doctors and their staff seem to be overwhelmed and understaffed, but things have fallen through the cracks personally for me (for example not getting the call for my INR results until 24 hours after I had the blood drawn) and I don't care if they think I'm a pest or a "B" this is my life. I will check this site often to see how you are doing feel free to respond, good luck Madison!

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I guess I wanted to respond to you as I've been pretty freaked out about my INR's and feel kinda lost as there really is not a web-site for people like us to talk to one another about what is going through our heads, the worry, stress etc.  This site is really for folks that have Protein S thats why you won't get alot of people responding to your request for information.

You could try http://www.thelupussite.com/forum/ ... They use the same forum software as we do and have a staggering 9000 forum members. So you ought to be able to find someone with Lupus to talk to!

There is a charity for Lupus operating in the UK (I'm sure there are more Lupus charities for other parts of the world) so if anything you are one step ahead of PSD folk. Maybe we will catch up with Lupus UK at some point?

http://www.lupusuk.com/

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Guest mjshogren

Hi my name is Mandy I was told i had PSD last Feb. after getting a blood clot in the portal vain of my liver. For the first few months that i was on Warfin. I didn't have a problem with my INR and no every week I am either to high or too low. Most of the time time it is too high. I asked my doctor and he said that it is very common for this to happen most of the time it is caused by the foods u eat and ur exerise level. I hope that helps u a little bit

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