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22 yrs old with blood clots in lungs

Posted by @lrprice in Lung Health, Sep 24, 2012

Hey. I'm 22. In April of this year I was diagnosed with several blood clots in both lungs. I take high doses of warfarin daily, 25 mgs. In June I started having severe leg pain. A few days later it was in my back. Now I have severe pain everyday of my life. Have to take pain pills so I can move. I visit the Dr every week. And frequent er visits. I'm tired of taking pills. They say my clots came from smoking and birth control pills. My INR levels have not been therapeutic ever. Please help me.

Tags: lung conditions, Blood Clots

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Posted by @piglit, Sep 24, 2012

Hi sweetie so very sorry that you have and are experiencing these problems at such an early age. I can fully relate to what you are going through. I too have had clots on my lungs and in my legs. I will be on warfarin for the rest of my days. I have a disorder called Factor V Leiden . As for the pain take the pain relief somedays will be better than others and at times if you have to go to hospital for some help well be it my dear. You know I've found that somehow we just have to remain as positive as we can and make the best of the good days. As for the inr levels mine too can go out of the therapeutic range and this is quite common to occur with some of us. Sweetie try to just settle down a little and keep yourself as stress free as you can. Also try to watch what you eat as high potassium will also alter the inr reading a good healthy diet or if you can obtain the comaudin book it will guide you into what you should and shouldn't eat. You will stay in my thoughts and prayers and I'm always here anytime that you need to talk. Take care Annie

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Posted by @lrprice, Sep 24, 2012

Thanks for the response. Today I'm in a very bad shape. Every muscle in my body hurts. Have to crawl up my stairs. I'm gonna look up the condition you mentioned. Thank you again

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Posted by @piglit, Sep 25, 2012

Hi sorry that your having a bad day today. With the Factor V Leiden it will only show if you are tested for this so don't be alarmed with reading about it Take care Please let me know how you get along Annie

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Posted by @judyparker, Oct 1, 2012

SO sorry to hear that don't lose hope . Keep up the fight ...

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Posted by @caroleann, Oct 3, 2012

I would reply and agree with piglet's response. I had 4 pulmonary clots in my lungs in 2006 and was hospitalized for 10 days. I used the Coumadin for about a year and then the decision was left up to me to either continue or not. I had a different situation as mine came from a break in my leg so I decided to stop the Coumadin and opt for my two aspirins ecah night. I've done that all of my life. Irprice, take piglet's suggestions, especially the one about calming down some. Sometimes the stress of worrying about these things can make everything seem so out of proportion. Take care little one. You'll be ok.


Posted by @lrprice, Oct 3, 2012

Thanks. I was off my cousin all weekend. Had No pain at all. But had tl start it all over today:(. Thanks for the encouragement


Posted by @piglit, Oct 3, 2012

Take care sweetie and always here anytime if you need to talk also a suggestion lavender oil or cream helps to relax as well I find that it helps. Talk soon Piglit


Posted by @lain59, Oct 7, 2012

Love to you, Roxe and Piglet.


Posted by @piglit, Oct 7, 2012

Love back to you too sweetie


Posted by @allanhoffman3, Oct 3, 2012

I take it Irprice you have already exhausted all resources at both VCU and UVA and have you checked Eastern Virginia Medical School?


Posted by @brittany1, Oct 20, 2012

I was 18 and had 6 in my lungs. they said the same to me. I am currently 23 and am struggling to find a doctor to help me. I cannot get therapeutic. I'm on 15mg of Coumadin and a lovenox daily. throughout the years, I have come to find I have more than lupus anticoagulant. I am in so much pain daily. I also have Raynaud's phenomenon, i'm having TIA's, spinal stenosis, APS, 40% blockage in my carotid artery or something ( I just was released from the hospital for that), my heart rate jumps to 150 resting, my skin feels like I am laying on sharp rocks all over sometimes, not often, but it is so painful, migraines.. the list goes on. I was accepted into the mayo clinic in Rochester MN but I never sent back my triage papers BC I was losing my medical insurance that week and was overwhelmed with finances. I am begging for help as well. I look to the lupus anticoagulant group on Facebook as a family in need. they have helped me so much. I talk with all my problems and have actually had gotten correct information and was able to tell my doctor what was wrong for once. it's just a support group, not a medical advise group. just making that clear. and I would love to help BC I am at my bottom with this disease. no one can understand except those whom have it


Posted by @lindaanglebrandt, Aug 20, 2014

Ask your doctor if he thinks you may be Coumadin Resistant. Also, ask about genetic testing to be safe should it be decided to discontinue thinners. Google Post Thrombotic Syndrome, and see a Cardiologist to see if your heart has damage. At your age you will pay in the long run if you don't self advocate for proper care. Having a Hematologist check for genetic disorders can save much stress worrying about recurrence, and ask about your diet - Vitamin K intake.It is now recommended you continue eatting the same amount of vegetables containing K that you did before. The body needs Vit K to have proper clotting balance.


Posted by @piglit, Aug 20, 2014

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