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Posted by @pattymac in Heart & Blood Health, Oct 13, 2011

I've just spent a week in hospital with multiple clots in my lungs,have been out since monday.I went to my Dr. today and am on Coumadin for life now.I am also feeling like i have the flu since Ive been home.I was given so many drugs while in hospital Im assuming thats why I feel like this.I dont go back till December for another ct scan to see if they are still there.Im so scared that I will throw a clot before then,any advice?

Tags: lung conditions, dvts


Posted by @kevingayle, Oct 13, 2011

I have had dvt's twice as a result of chemo treatments .I am monitored regularly between md visits by having pt/inr levels checked by nurse visits to mds office.These visits hve helped to keep my coumadin therapy on track and serve bas a warning if my pt/inr is not in the theraputic level . The nurse checking my level is also quite helpful answering my questions.


Posted by @kevingayle, Oct 13, 2011

did not mean for my post to be anonymous, I am new to the site.


Posted by @fay, Nov 16, 2011

I have DVT in my left leg since May 2009. Have had 3 visits to Mayo since. Make sure the person watching your INR is a Coumadin Clinic (Nurse whose main job is to watch people on coumadin). My clots are going to probably be with me for life as they are so massive and solid and my valves are leaking - I take 9 mg of coumadin a day. We can't dwell on the fact that they may move - we have to live life.


Posted by @specialed, Nov 26, 2011

I injured my left calf in July '06, and was diagnosed with DVT & PE that September. You will have some tough days, but it's going to get better with time. I tell people that I went from 47 to 74. Find good doctors, ask lots of questions, try to stay active and do what you have to do to enjoy life. Remember my motto "Alive, Kickin and COMPLAINING!" The latter is sometimes most important.

Nat likes this

Posted by @dpeters1, Jan 26, 2012

I just survived my second PE. Had the first 25 years ago at age 19. Second one last month. Had a couple DVT's in my legs in the last 6 years as well. On coumadin 1 year after the first PE. 19 years before I had another clot (DVT in leg). Diagnosed with Factor V Lieden at that time. With history of second PE, lifetime coumadin for me now. A PE makes it feel like you've been run over by a truck. I'm one month out now and still have chest pain that feels like it is coming from my heart and pain in my back where the PE is. I usually sleep about 6 hours a night but can easily sleep 12 hours now. The good news is that the truck that ran me over feels a little smaller each day. I recovered 100% from my first PE and am confident that I will completely recover from this one as well. It takes a lot of patience, but you will slowly improve. I walked my dog for 40 minutes today. I used to walk her 1.25 hours per day. Right after the PE, I couldn't walk her at all. Definitely trending up!

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Posted by @nat, Feb 14, 2012

Thanks - very positive. My first DVT and PE was last year and am V Lieden - yup a mutant ; ). Still struggling with the whole Coumadin/Warfarin dance due to unique vegetarian diet and can't seem to accept the fact that basically, there is no real alternative. Still active, want to be free of the lab needles, but have heard not so good reviews of the home testing machines. Am in awe of the high risk takers who choose the aspirin treatment approach.

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Posted by @piglit, Feb 14, 2012

Hi also have factor V leiden . I am on comaudin for life. I had an major episode of PE'S on both lungs ten years ago along with a Dvt in my leg. Over thelast two years I have had a total of five Dvt's in my leg. However only about 10% have the problem with ongoing clotting problems. I have regular blood tests, once a week as my INR never stays within the range. I too am still active and continue to work and keep busy. I don't use the testing machine under the advice of my Dr, who is sure of the accuracy. Aspirin is not good with the use of comaudin as you know so they are definetley high risk takers. Take care


Posted by @dpeters1, Feb 14, 2012

I've heard that Pradaxa might eventually be approved for anticoagulation for people like us. I hope this is true. Simpler drug to manage and no blood testing necessary. Anyone that is avoiding coumadin and taking aspirin is doing the wrong thing. Whole different path of anticoagulation. FWIW, I was off coumadin when I got my second PE following my doctor's advice. I was on an aspirin a day for cardiovascular health. Got the DVT in my arm and PE anyway.

As for me, I'm still on the slow path to recovery. Definitely feeling better, but I can't wait to get my energy back. If I overdo things, I feel lousy the next day and the chest pain is more pronounced. Grateful for everyday, but getting impatient. Guess that means I'm feeling better!

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