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PSTENSEN Posts: 34
7/30/10 7:11 P

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Wow Jenn,
Praise God you're okay. 1.5 hrs? That's incredible that you made it in spite. I have Protein S Deficiency (PSD) & so does my son. I started with the clotting problems at age 21 but no one knew why until 1989. That's when I got a clot in the mesentaric vein. I've been on warfarin for left since then, but had been on and off it from '72-'89. I also have a long history of clots before the diagnosis. I have salad once in awhile, but not much. I also test at home w/a INRatio Machine. My son still goes to the lab and refuses to let me home test him. He is 37 & was born with multiple disabilities due to the warfarin. Our plebotomist just passed away 2 weeks ago. My son (& I) took it hard; you get attached to people who serve you on a regular basis like that. Hope all continues to go better for you. God must have a special purpose for you.

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JULEY0129's Photo JULEY0129 Posts: 138
7/30/10 6:55 P

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I am glad that you are ok. I had a blood clot in 2006. I have factor 5, lupus anticoagulant and Viper Venom. I have not had my 2 daughters tested but guess I need to.

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JENNKNUT's Photo JENNKNUT Posts: 484
7/7/10 8:41 P

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I guess my PE stopped my heart and I had to have CPR for an hour and a half... I guess they really didn't think I would make it but I did! I also have Factor V Leiden and so does my daughter. I need to get my son tested as well. I also had a weird thing called May-Thurner syndrome, where my femoral artery and femoral vein in my left leg, crossed over each other, compressing it. I have tried to stay away from the greens, but I miss them. I think I would lose more weight if I started eating some of the healthy things! I am so happy to find other people who take this medicine!

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DKOMADIN's Photo DKOMADIN Posts: 629
7/6/10 5:41 P

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Hi Jen-
I had a PE but there did not seem to be much damage. Wow,you are lucky to have survived. I also have a genetic clotting disorder, Factor V Leiden, inherited from my mother. I love my greens, so I take 10 mg M&W and 15 mg the remaining days. Before I moved to FL I was taking 15 mg and 17.5 mg. The Coumadin Clinic said the hot weather tends to thin the blood and therefore less warfarin is needed. Good luck with the weight loss. I chose to keep eating salads and collards and take more medication. When I cut back on the greens I gain weight because I am loading up on junk instead.

The most beautiful thing is to see a person smiling… And even more beautiful is, knowing that you are the reason behind it!!!

Live in such a way that those who know you but don't know God
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PSTENSEN Posts: 34
7/6/10 8:07 A

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Hi Jenn, I have been on warfarin steadily for the past 21 years, and on & off it for the previous 17 yrs. I'm on for life cuz, like you, I also have a blood clotting disorder, however they have identified it for me. I have Protein S Deficiency. It also is genetic. My son has it too (besides being disabled). The coumadin I was taking when I was carrying him caused his disabilities. I'm sorry to hear that you had the PE & was in a coma. I've had 3 PEs, but never caused a coma so I consider myself blessed. I take 3mg 2x wk, & 1.5mg 5x wk. I also self test at home weekly. I've been really stable for almost 20 yrs now, I attribute that to a great dr. who knows his stuff. I also try to follow the recommendations for foods to stay away from. If you would like more information about that, here's a website you can visit and read more: http://www.ahrq.gov/consumer/btpills.pdf
you can download this booklet & print it out if you want.
I too have trouble losing weight, but it's not due to warfarin, it's due to lack of exercise, I also have Post Thrombotic Syndrome which is caused from clots in the legs. I experience cronic leg pain which can range from .5 to 8. The "8" days I sit w/them elevated, take vicodin, and cry! Anything less, I try to function, but if I NEED to I do take the vicodin, but no more than 2 a day. I don't know if you have leg pain that seems to not go away, but if you do, this is a real possiblity. I suffered for many many years before my current dr. finally told me what it was and that "there's nothing he can do for me except "mask the pain" with pain pills." I hope you're not having this problem too.
Good luck on your journey. This is a great place to get in touch with others with the same problems.
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Edited by: PSTENSEN at: 7/6/2010 (08:08)
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JAMER123's Photo JAMER123 Posts: 46,766
7/5/10 10:45 P

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emoticon Jennifer and emoticon to the team. I had started out with needing 7.5-10mg daily for massive Pulmonary emboli and was stable for several yrs. Then I got a infection and needed large doses of antibiotics which threw me into a free fall with my INR. Took a yr. to get it stable again. I also take ASA, fish oil, vit.E and other meds that thin the blood. We know there is a genetic link as my father and a couple of his cousins had similar clots. My blood has gone to several major labs/research and they all are saying there is a link but probably something that has yet to be discovered. And so I wait.

I don't think the Warfarin has anything to do with weight gain/loss. Try to evaluation closely on what you do, what you eat and what hours you work. Use the food tracker and fitness tracker to see what changes you might need to do. Are you eating more than 1200 cals? The body goes into a "starvation" mode with anything under 1200 cals. This means it hangs onto any carb or fat it can just to be safe in case it starves. Check out these possibilities and post again. I will try to help as I can. Drink at least 8 glasses of water daily; this helps purge the system and also "tricks: the brain into thinking you are full. Best wishes to you on your journey to a healthier lifestyle.

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Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.
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JENNKNUT's Photo JENNKNUT Posts: 484
7/5/10 9:22 P

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Hi, imagine my surprise to find this group here! I am on warfarin and I had a Pulmonary Embolism last year. I was in a coma for a couple of months, and then went through 5 surgeries throughout the year. I have a genetic condition for blood clots and I take 10 - 12.5 mg of Warfarin a day... but my blood is like pudding and that is what it takes. I am having a hard time even dropping one pound! Anyone else having that problem? I get my INR tested each month and I am just really loving life! Jennifer

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