DVT/PE & Blood Clotting Disorder Support & Information

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

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Doctors, more clotting, some natto, and a bag of fish
fetchingferret wrote in thrombi_support
Well, no fish, it just sounded right. :D Har.

Anyway, Jello, my name is Ferret, and my body is trying to kill me. I was diagnosed 4ish years ago, and have been clotting like a trooper ever since. PE's every time. Lately my GP's new trick is to say "No, its not as clot, go home and take some pain killers" then conveniently forget to give me some. Last time I was in the hospi they based everything off a D-Dimer and an X-ray. My clots have ever only shown up with a VQScan (the one where you breath the stuff in) which I keep telling them but they are convinced otherwise. It would show up on the X-Ray and there is no way you would get a negative D-Dim they say. Which I now know is a load, and I keep trying to tell them, but hey, they are doctors!!! And I am the only fricken FVLer in the Village! (Sorry, to much little britian on adverts today)

Anyway, my issue is this:
  • I keep getting the ouchy clottie pain, have had it this round for months, and as of today it hurts worse then the very first time I went in, and nearly died.
  • The GP will listen to my chest, and say its clear thus no clot, but its always clear and I always have great O2 stats. Anyone else get this?
  • When I do make it past the GP to the Hospital its:
    • Listen to chest
    • Check INR
    • D-Dimer
    • X-Ray
    • Bit of Morphine
    • To a room if INR is low, home if its near normal, with crap pain killers and a "its not a clot"
  • When I ask: Ok, its not a clot, then what is it and how long will I be begging friends and family to kill me for? I get silence, then "Its not a clot" Which, you know, irks me.
  • My warfarin is screwing with me, but they wont put me on anything else, despite the hair loss, sickness when I get above 8MG, and severely unstable INR. What else is there that I can suggest to them?

I guess what I really need to know, is what questions to ask, and what could be going on? My only symptoms are generally feeling crappy and having chest pain, which is why it took them 20 hours in the ER to figure out what was wrong with me the first time as the D-Dimer and EVERYTHING ELSE were normal. Which I keep telling them and get "that's imposable, you would have had definite results with the D-Dimer" I can change doctors, if I can find another one in my "area" that is taking patients. As is I have to go a few miles onto the Island because all the GPs around here are booked, even the one right across the street from my fricken house. Hooray NHS. I can't go private cause I can't afford it, so pretty much I have to move to get a different doctor, which is a bit excessive.

Anyone else have freak clots? Anyone have ideas or suggestions? Help!?! Also, does anyone else get the pinching in the brain feeling that oozes out and feels like your nose is bleeding even when it isn't? Any idea what that is? Again, clueless doctors. Oh, I am taking natto as well, which I'm not sure is helping, but the leg cramps are gone, so I guess it is a bit.

Thanks guys! Sorry so long!!!!!


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D-dimer can give false negatives if you're on blood thinners. As for alternatives to Warfarin, there's Lovenox and other injected low-molecular weight Heparin type drugs. (Assuming you've never had a bad reaction to Heparin) I don't know if Lovenox is called the same name in the UK, it may very well be sold under a different name.

For what it's worth, my huge honking saddlebag clot didn't show up on a simple X-Ray either, only on a CT scan.

Yeah, it can give false results if the clot is to new, to old, if you have had a clot before, if you are on warfarin, and about 200 other reasons, but its all this hospital depends on, they are going to kill someone. They say they don't want to put me on Lovenox as they don't like sending people home on injectables, so I wonder how every UK diabetic is still alive..

Mine showed in the CT but only when they did the VQ to find where the blood stopped flowing into the lung then went page by page, and the sucker was massive!! They said if they had sent me home I probably would have died or at least had a heart attack. But that was in a US Military Hospital where my dad was very important, so they went out of budget to find what was up, that and I had a doc just off his school and intern looking for weird shit to write papers about :P

I need another one it seems lol! Bless med students!

Sorry, just catching up - was in the hospital several times with clotty goodness from March til May ^_^;;

Anyway, both instances I had of PE wer with excellent O2 sats, until I developed pulmonary hypertension with this last bout, where my O2 dropped to about 88% and I developed syncope in the bathroom of all places (I was in the hospital when I got these clots - thanks doc!).

My lungs were always clear, except when I was coughing up blood, which was caused by PAVMs, I later found out (pulmonary arteriovenous malformations).

I have a freaky bleeding problem in my lungs. But I'm a clotter. So don't feel bad in your freakiness. And I went to the Mayo hospital here in Minnesota - Rochester. THEY can't figure out why I bleed and clot. They can fix the episodes as they occur...sort of. I am full of what I call "shrapnel" in my lungs - titanium plugs for the AVMs. And once again on blood thinner for "life", although I was told that last time. They can't find a genetic cause for the AVMs. Most people who get them have either Lupus or Osler-Weber-Rendu syndrome. I have neither. Go me! I'm just happy I didn't bleed to death, and that my bilateral PE, bilateral DVT, and clotted filter that occured at the same time I was gushing blood from my lungs didn't kill me. *cough*


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