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  1. #21
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    A Haematologist is definately the way to go.

    I had a huge DVT (ankle to belly button) when I was pregnant with my twins. The Haematlogist arranged genetic testing but he didn't find a genetic link even though our family history is a bit suss when it comes to blood clots. I was on clexane from 9weeks pregnant to 1 month after I had my girls.

    Then suddenly when the girls were 5yrs old I went to the hospital with what I thought was Heart Palpitations and they found the PE and numerous clots in my lungs. I'm now on warfarin for life.

  2. #22
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    Wow Dannielle that is unbelievable, I'm sorry that they weren't able to determine the cause. Did you try again with the specialist when they found the PE's? Warfarin for life.... Now that scares the hell out of me

    Me and my family are absolutely convinced that these blood clots are a result of the accident but so far I have been unable to get any of my doctors to put that on paper as they feel there has been too much time between the accident and now I was a healthy person before the accident and I'm determined to get there again even if they do treat it as separate from the workers comp although it does make my situation difficult to manage

    My treating doctor is lovely and I owe her my life for suspecting clots and sending me straight to hospital (at the time I thought she was mad lol) she is also looking after my workers comp case so it feels like I'm always sitting in the doctors waiting room (I'm sitting here now as I type this for my review and INR blood test).

    I have been speaking with my husband and he thinks once I am finished with the workers comp side of things I resign from my job and take some time to relax and recover an focus on my health. The stress of work was getting too much even before all of this so I am looking forward to typing that resignation letter if that's what we finally decide

    I'm still having my good days and bad days but I'm managing with looking after my daughter. I have an amazing support network of family and friends and my MIL has traveled to Sydney to help us until Xmas.

    We have even decided to play INR lotto, guessing what today's results might be haha

  3. #23
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    *Hugs* I hope next year is a better year for you! Hang in there. I know it's tough and you're struggling right now but things will get better xx

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    bubbella  (16-12-2011)

  5. #24
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    well today's results were very good. INR is 2.5 so I'm "therapeutic" whooo hooo, no needles over the weekend, next blood test is Monday, fingers crossed that it stays that way.

    I spoke to my doctor about seeing a Haematologist and she agreed. She is going to request the results from the hospital and go from there. I just want to find out what happened to get me here and how I prevent it from happening again.

  6. #25
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    That's good news.

    I always stress about my INR at this time of year because my GP closes for quite a while. Although my GP is unreal and even got me to check my INR while he was on holidays last year and he rang me. This time though we are the one's going away so I'm nervous.

    Yeah, it's horrible being on warfarin for life but at least my GP makes it easy for me. I have a file at the pathology and just go in, do the blood test and leave a message that afternoon for my GP to ring me. Then he calls with results. We tried going 4 weekly for blood tests but for some reason 3 weekly seems to work better for me.

    Yes, I went back to the Haematologist and still no real answer as to why I had the blood clots and then the PE. He found my case interresting and agreed with the Dr at the Hospital and my GP about being on warfarin forever. He felt the risk of getting another one was too big. He basically guaranteed me that I would get another one if I didn't stay on warfarin. Not much else he could do though unfortunately. He couldn't give me any answers for the PE, there was no warning at all and no reason he could give me as to why it might have happened. With my DVT he blamed twin pregnancy and years of IVF.

    Except he did say that one day there may be a replacement for warfarin that doesn't require blood tests and isn't affected by any food. Apparently it's out now but only for people that are on it for heart problems.

    My grandmother had numerous (possibly just superficial but we aren't 100% sure) clots in her legs for years and years and my mother has had a superficial one in her leg. My cousin had one in his leg when he was 9yrs old. And my sister had a blood clot in the placenta with my neice. Haematologist looked at both sets of my results and my sisters. Weird but he still couldn't find any genetic reasons for the clots.

  7. #26
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    Just thought I would add, a bit OT sort of but when I saw the Haematologist I also saw him because of problems with my periods. He wanted me to get the Mirena (which I did) and said it was perfectly safe for me.

    If I had to guess I would say the accident is to blame. Sounds like too much of a co-incidence. Hopefully you will get some answers.

    Good luck.

  8. #27
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    You poor thing

  9. #28
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    Amazing that they weren't able to find a reason for your clots when it seems there are other family members with similar issues

    I asked my GP about the mirena the other day and she said nothing was suitable as they all contain hormornes, I've been googling non-stop to find out as much as I can about PE's and possible contraceptives as I find it difficult to believe that there are so many of us out there and no solution except condoms Maybe I can get in the Haematologists ear when I get my referral and see what happens.

    My GP is closing over Christmas and New Year and I'm quite anxious about how I can manage my INR especially since we are only in very early days but I asked my Dr when I was there on Friday and she wants to see me twice this week so I'm guessing she will assess the situation on Friday just before they close up for Chrissy

    I like the idea of a replacement for Warfarin even if I'm fortunate enough to never go back on it again, I will always have an appreciation for how difficult it is to manage

  10. #29
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    Quote Originally Posted by bubbella View Post
    I asked my GP about the mirena the other day and she said nothing was suitable as they all contain hormornes, I've been googling non-stop to find out as much as I can about PE's and possible contraceptives as I find it difficult to believe that there are so many of us out there and no solution except condoms Maybe I can get in the Haematologists ear when I get my referral and see what happens.
    The Haematologist I saw is the Senior Staff Specialist - Head of Haematology or something along those lines and he assured me the Mirena is perfectly safe. I actually don't need a contraceptive at all. The girls are all IVF/ICSI and I haven't been on any form of contraceptive in about 17yrs. But the Haematologist said I would benefit from the Mirena.

    Then when I went back to my GP (who had to give me a referal to a Gyno), he also said it was safe.

    But just to be sure I checked with the Gyno as well. Due to my issues he said my only non surgical option was a Mirena. He said it was perfectly safe. (And thats even after telling him not only about my DVT & PE but also about my mum who had breast cancer.) He said the hormones are minimal.
    Last edited by Dannielle; 19-12-2011 at 09:17.

  11. #30
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    What a horrible way to end the year. I hope next is super good to you.


 

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