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RABDALLA SparkPoints: (0)
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9/17/11 11:05 A

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Hello everyone, I am 41 years old and I ve been diagnosed by Factor V. My father passed away in his early 50s, I was 9 years old then. My brother and sister also have it and they had blood clots. I did not have any blood clots and have some symptoms that I dont think are linked. I have muscle aches and lack of energy. I m also overweight. not sure what is the best diet I follow and if there are any medications I should take at the moment . Currently Im on Crestor for Cholestrol , vitamin B and Omega ( fish oil)/ Thanks alot and I wish you all the best and the health in the world for all of you from the deep of my heart. emoticon

BECOMINGDEB's Photo BECOMINGDEB Posts: 4,274
1/14/11 4:44 P

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I've just found out recently that I have this condition as well. So far I haven't received any counseling one way or another as far as diet or whether or not I'll need to be on blood thinner the rest of my life or anything. I was on coumadin once before and knew I just had to be careful to have my vitamin K levels as steady as possible from one day to the next.

"It is never too late to be what you might have been." -George Eliot



BYERSDK's Photo BYERSDK Posts: 452
1/14/11 1:49 P

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Hi-- I was diagnosed in 2005 at the age of 43 after having yet another DVT. I have always had heavy, crampy periods, pain & heaviness in my legs- just didnt know why. I had my first confirmed DVT after an orthopedic surgery... and after that I have had many. So they finally tested me. Was on coumadin for a long time but still kept getting clots. Could not get my INR therapeutic. I finally have transitioned to just taking aspirin per my request-- I have done this for about 2 years & have done ok. My reason for this was I have severe migraines & moderate joint pain & I was told I shouldnt take anti-inflam with the coumadin. I just couldnt take it... so it was my decision & so far ok. I have 2 daughters who have inherited this disorder from me... they both have had issues with their pregnancies & miscarriages. My favorite foods are greens--heavy in vit K-- but if I eat more than usual or notice a heaviness in my legs or arms I take another dose of aspirin. Now-- I wouldnt expect anybody else to come off their coumadin & use aspirin -- but I had my own reasons for doing this. I had lived with this problem without knowing about it or having any treatment for it for over 40 years & i am still here. So my view is at least I am doing something to treat & it has actually been more successful for me that when I was on coumadin. I know my risk for stroke, heart attack & PE are higher than the average person-- but I am doing what works for me. There may come a day when i have to take coumadin again---like before or after surgery-- but I will probably ask for injection form which doesnt require labs.

Edited by: BYERSDK at: 1/14/2011 (13:51)
Live every day to the fullest-- leave no room for regrets...

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BARCLE's Photo BARCLE SparkPoints: (166,188)
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8/28/10 9:23 P

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Hi all, I've joined this team because although I am negative for this my mother, sister, and brother are all positive. I think some of my cousins and aunties are too but I can't remember. In due course I will get my children tested because I understand that even though I am not positive for this there is a genetic connection and it can apparently skip a generation.

Other things I am aware of that need consideration, if you are positive, is if you are facing surgery (we only found out about it when my mum had her hip replaced 10 years ago and had a huge clot in her calf that wasn't discovered for a month or so) For air travel or even long periods of sitting pressure stockings are a good idea.

Anyway, I hope some of my addition is useful emoticon

Smile .... it makes people wonder what you're up to ;-)

The fourth glass of wine is always a good idea before you do it and a really bad idea afterward! ;-)

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_MIDNIGHT_ Posts: 290
12/14/09 10:04 P

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Oh yea, also no contraceptive pill

I'm a pole dancer trapped in a fat persons body.




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_MIDNIGHT_ Posts: 290
12/14/09 10:03 P

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Hi Alkie, I think most of it depends on whether you have had any symptoms of factor v such as any clots? I had a PE after the birth of my son this yr in May and almost lost my life. They found out I have Factor V, antiphospholipid antibody syndrome and Protein S deficiency so I am on blood thinners for life. Because of this, I have to be careful with the amount of greens I eat, because of the levels of vitamin k. I find it hard to keep my INR up so I need to eat the same amount of greens each day or it will affect my levels. Alcohol is also a factor, the odd drink is ok but I need to consult my doctor if I know im gonna have more than a couple so they can adjust my meds(ive just decided not to drink)
My periods were always quite light, even on the blood thinners I had no change, but if you do have problems with them, the Mirena is suppose to be very effective in making them lighter(I had one of these put in cos im not allowed to fall accidentely pregnant on warfarin)
If youve recently been diagnosed with this, you would have had it your whole life as its genetic, so nothing should actually change in this department
Hope ive helped with some of your questions
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Alicia

I'm a pole dancer trapped in a fat persons body.




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MARTIDL's Photo MARTIDL SparkPoints: (9,496)
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11/13/09 10:49 P

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ALKIE69....you pose very good questions in my opinion. I too have just be recently diagnosed with Factor V Leiden as well as DVTs and superficial blood clots AND severe anemia AND severe endometriosis AND severe abnormal bleeding during my periods so I can certainly appreciate where you are coming from! I, too, am interested to know who might be out there with more experience than I concerning the life changes I am needing to make to stay as healthy as possible...

Donna



"If IT is to be, it must start with ME"...Gary Khoury, Master Black Belt


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ALKIE69 Posts: 1
11/13/09 4:59 P

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Hello everyone. I have just been recently diagnosed with Factor V Leiden and my plan is to conquer this thing and stay fit. Can anyone tell me in there experience if there is a better diet to follow than any other? Can any of the woman tell me if they experienced special situations relative to their periods. I am a little concerned about heavy bleeding during mine and if it's especially dangerous during that time of the month. Thanks. Look forward to reading your posts.

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