DVT/PE & Blood Clotting Disorder Support & Information

Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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o rly ♥, coy
elfmoogle wrote in thrombi_support
Well, after being off of coumadin for three weeks, I had an episode of massive hemoptysis. I went to the ER, was admitted, and was kept in there for a week. Then I started feeling pain in my calves, toward my ankles, and I told the nurses, who waited until two days later to do an ultrasound. I was found to have bilateral DVTs from my femoral veins to my calves (I think that's how it goes..they were from my mid-thigh to mid-calf anyway). I was incensed. The hematologists on call didn't want to put me on blood thinner for fear of more hemoptysis. They figured the IVC filter would catch any clot I let loose from my legs. I insisted a transfer to Mayo, since I had already fainted once, my heartrate was higher than normal, I was shown to have moderate to severe pulmonary hypertension, and I could barely walk without panting. Once I got to Mayo, they suspected PE, so they did a CT scan, and sure enough I had PEs in the main artery and segmental and subsegmental PEs. I also had a big clot beneath AND above my filter. So much for it catching things. All this after three weeks off coumadin and a one week bedrest stay at a hospital. So, to recap: bilateral DVT, bilateral PE, and clots above and below my IVC filter. I'm lucky to still be here, frankly. At Mayo, the cause for all the hemoptysis I've been having was FINALLY found. I had a bunch of PAVMs - at least seven areas were embolized with titaniam coils, not counting what my local hospital embolized (three areas) with some quicker but more likely to recanalize material. Fluid ended up gathering in my left lung afterward - 250ccs were drained. I spiked a fever. My lower left lobe collapsed. My left diaphragm raised up due to the embolization procedures and it's unknown whether it will fall back in place or not. My lung is expanding, doing better, I was on oxygen for most of my hospital stay, but I'm not on it now. I do get very short of breath if I stand for a long period of time or walk farther than several hundred feet (I know I can walk more than 300 per physical therapy, but beyond that I don't know the exact distance).

The hospital I started out at KNEW I had FVL (heterozygous), and they had pneumatic compression boots laid out to put on me but they never did. They had TED stockings for me which they never put on. After I was in a great amount of pain, THEN they started pushing me to move around and by then I couldn't. I was in the hospital for over a month. Now my legs (especially my right) hurt a LOT when I walk, sometimes when I'm just sitting or laying down. I have most of the feeling back in my left leg, but my right leg is half feeling, part pinpricks, part tingling, part numb. I wear support hose now that I've come home (just got home today), but in the hospital, they wrapped my legs with ACE bandages to help keep the swelling down and improve circulation.

At Mayo, they considered putting another IVC filter in, but had to ditch that idea because it would have to go on top of the old one, and they were afraid of renal vein embolization. I feel like a giant clot, but I'm glad to be alive. I celebrated my 24th birthday in the hospital.

Oh yeah, I'm back on coumadin now. While at Mayo, until my INR hit 2>, they had me on Fragmin as well, but today my INR was 2.1, and it has been steadily climbing at 10mg per day of coumadin. I see my doc on Friday, I'll likely get a check then, to be sure I'm not climbing right over the 3, or dipping. I think I'll be able to return to my old dose of 10mg 5 days a week and 7.5mg 2 days a week, since 10mg every day seems to be making my INR creep up .2 every day.



(x-posted to my journal)

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Dang, you really went through the wringer. Again. I am starting to think that The Wringer™ is an actual, technical term of hemotology, because that's what they keep saying to me every time they bring up my recent medical history on their computers. I know! The Wringer™ would be a great brand name for those compression boots!

And happy birthday. Many highly superior people are born in March, y'know.

Happy Birthday! You really have been through the works lately. I'm glad the transfer to Mayo got you better care. I dispise hospitals anymore.

You've got amazing strength, and I wish you a fast recovery!!

Thats good that your INR has been pretty stable.
Mines way too low and keeps dropping..but can you tell me more about the venacava(sp) filter? im getting one when im older

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