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Old 09-28-10, 06:02 AM   #1
Mr IGH
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2nd DVT, any factor 5 folks here?

I am so depressed. I'll be 50 in Feb, I just received my second DVT, first one was over 5 years ago in my right leg. Doc took me off Wayfarin 4 years ago and everything was good until three weeks ago. Got a shallow clot 2 weeks ago, it dissolved as of Friday. Was starting mild exercise Saturday (Tai Chi). Sunday night I new I had a bad clot, went to ER first thing Monday morning.

I have factor 5 blood clotting disorder (~4% of the population has this). Anyone here have any personal/significant other info on living with this?
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Old 09-28-10, 09:30 AM   #2
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Factor 5 Leiden mutation?
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Old 09-28-10, 02:41 PM   #3
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I'm not a doc, they just call it factor 5 to me, when I tell the nurses/docs they just nod their heads and say "Oh, factor 5".
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Old 09-28-10, 04:13 PM   #4
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http://www.fvleiden.org/
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Old 09-28-10, 05:07 PM   #5
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Clot moved to my lungs, now I'm in the hospital...this isn't fun....
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Old 09-28-10, 05:09 PM   #6
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Clot moved to my lungs, now I'm in the hospital...this isn't fun....
Wishing you the very best. That's tough. In our prayers.
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Old 09-28-10, 05:11 PM   #7
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Clot moved to my lungs, now I'm in the hospital...this isn't fun....
I know nothing about your condition, but wishing you a full and swift recovery.
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Old 09-28-10, 06:39 PM   #8
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Best to you.
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Old 09-28-10, 06:53 PM   #9
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Thanks for the kind words and prayers. I'm not in any pain (except from all the sticks and the CT). These days the hospital has free wireless and HDTV with DVD. I need to learn to live with this condition. I'll see the expert doc tomorrow and learn more.
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Old 09-28-10, 07:37 PM   #10
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If you plug into a search engine "Factor V Leiden mutation" and then stick to the reputable sources (NIH, Cleveland Clinic, Mayo, my own web site -- just kidding --) you'll find out lots of good stuff. I know several of the cyclists on the over 50 site are on long term warfarin and seem to do just fine. When you get seriously bored, you can use the BF search engine and enter either warfarin or Coumadin (same stuff) and read the threads about their experiences.

I bet you'll be up and running much quicker than you think. Best wishes.
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Old 09-28-10, 07:40 PM   #11
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my dad's been on Coumadin for years, but I don't see him regularly enough to talk about how he lives with it. One of my sisters might have inherited the same sticky blood.
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Old 09-28-10, 08:47 PM   #12
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I'm guessing you're hooked up to a heparin infusion. Glad to hear no discomfort and free wi-fi and HDTV, to boot.

As TWL said, lots and lots of folks on long-term warfarin.

Remember to ask everybody who comes into your room: "Did you clean your hands?"
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Old 09-28-10, 09:10 PM   #13
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Clot moved to my lungs, now I'm in the hospital...this isn't fun....
Been there done that twice... I nearly died the first time I had pulmonary embolism problems. The lovenox/hepiren (sp?) injections they gave me in the gut, twice a day for 7 days, were not fun; kind of like a bee sting with a half dollar size bruise left behind. Second time I wasn't in nearly as bad of condition, because I knew what to look for symptom wise, but it was on Christmas Eve 2006, so there went the holidays for me.

At least in some ways you are lucky because they found a cause for your problems (not that they can solve it). But, the doctors have ran probably 50 tests on my blood, (my blood has been to cities that I'll never see) and never came up with a definitive cause for why my blood at the age of (then healthy active male) 45 just suddenly started clotting in my veins, they just treat the symptoms, because they can't find the overall cause.

Well, best of luck and quick recovery to you, I feel for what you are going through. I guess my final statement would be... Welcome to the Cumadin/Warifarin for life club. It's not as bad as some would have you believe.
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Old 09-29-10, 03:42 AM   #14
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...The lovenox/hepiren (sp?) injections they gave me in the gut, twice a day for 7 days, were not fun; kind of like a bee sting with a half dollar size bruise left behind.... Welcome to the Cumadin/Warifarin for life club. It's not as bad as some would have you believe.
Hey, that's me! They wanted me to do the injections...I told 'em I can't so I'm going to the Dr office every day.

I saw the hemo doc late last night. We determined that I had blood clots in my lungs for two weeks. Two trips to the ER and two Dr office visits yet nobody figured it out...Dr told me I am very lucky. The last two weeks I kept reviewing my life insurance and 401K funds value in my mind and had weird mortality thoughts.

Dr told me I am a life long Cumadin user and I'll never have an alcoholic drink again. Fine by me, I get to love my wife and kids and ride my bike. What more could I ask for?
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Old 09-29-10, 05:52 AM   #15
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Hey, that's me! They wanted me to do the injections...I told 'em I can't so I'm going to the Dr office every day.

I saw the hemo doc late last night. We determined that I had blood clots in my lungs for two weeks. Two trips to the ER and two Dr office visits yet nobody figured it out...Dr told me I am very lucky. The last two weeks I kept reviewing my life insurance and 401K funds value in my mind and had weird mortality thoughts.

Dr told me I am a life long Cumadin user and I'll never have an alcoholic drink again. Fine by me, I get to love my wife and kids and ride my bike. What more could I ask for?
What a great attitude. That's going to help your long term outlook more than anything else. My sister had a leg injury and dozens of clots moved to her lungs, part of her lung is now dead, and she's still a young 45. But she has an irrepressible spirit and a cheerful outlook, and she's come through fine. Now she needs to lose the weight she gained from being immobilized for so long.

My prayers go out to you and your family.
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Old 09-29-10, 07:30 AM   #16
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Pharmacists and/or nurses should start teaching you about warfarin use and dosage regulation while you are hospitalized - learn as much about that as you can.
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Old 09-29-10, 07:55 PM   #17
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Pharmacists and/or nurses should start teaching you about warfarin use and dosage regulation while you are hospitalized - learn as much about that as you can.
No kidding.

I was on it about 10 years ago for a DVT and just about bled out due to a dosing issue. Nasty stuff if attention is not paid.

Good luck and get well soon Mr. IGH. Not a pleasant time for you.
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Old 09-29-10, 08:20 PM   #18
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Watched the DVD today, was tutored by the RN, gave myself my first shot, I have to do it again to be discharged. At least I'm done with support stockings, now I can wear shorts again!
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Old 09-29-10, 09:11 PM   #19
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The shots in the belly don't hurt as much as you would think, do they? That's what I always told patients beforehand, anyway.
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