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  • Von Willebrand disease?

    Has anyone heard of this?

    I went to see a new GYN (my old one moved) and the woman went over my chart and after about five minutes "Von Willebrand disease" popped out of her mouth. She said I fit all of the symptoms perfectly (easy bleeding/bruising, gum bleeding after dental work, heavy and prolonged periods, problems clotting durring surgery, ect). She told me to have all my operative reports (gallbladder, appendix, and knee surgery along with cystoscopy reports) and a clotting factor report one of my docs did and is going to review them to see if further tests are needed (which they probably are) inorder to make a diagnosis.

    Anyway, just wondering if anyone has heard of this. I always thought that my bleeding was from the Elmiron, but when I stopped taking it the bleeding problems didn't stop.

    Medical "Issues":
    IC
    GERD
    Tachycardia(resting rate is 125-130 )
    Medicastions:
    Tramadol-as needed (IC)-50mg
    Elmiron 200mg twice a day
    Levsin .125mg 1-2 pills 4 times a day

  • #2
    I don't know much about it, except that it's an inherited condition. Have you had the easy bruising and bleeding all your life? If you do an internet search, you'll find lots of information.

    Donna
    Stay safe


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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I always bruised like a peach, that I know. Once when I was about...6 or 7, I remember while I was riding my bike, I got this awful nose bleed (there was blood all over everything). My mom had me do the "tilt an pinch" and it evntually stopped.

      The last few (3) years I have been having problems with bleeding during surgeries and my uro said it took a while for me to stop voiding blood after my cystoscopy. When I had my gallbladder out they had a hard time getting one of the inscisions to stop bleeding (the surgeon said it took an hour to get it to stop and they had to pack the inscision with...something). It was the same with my knee surgery, I had a lot of blood in the joint after.

      Medical "Issues":
      IC
      GERD
      Tachycardia(resting rate is 125-130 )
      Medicastions:
      Tramadol-as needed (IC)-50mg
      Elmiron 200mg twice a day
      Levsin .125mg 1-2 pills 4 times a day

      Comment


      • #4
        von Willebrand factor is a blood glycoprotein that's involved in clotting -- your endothelial cells (cells lining your blood vessels) produce it, and so do a few other tissues. It's involved in proper platelet aggregation -- ie, clotting.

        Von Willebrand Disease is a lack of this protein; Donna is right, it's an inherited disease -- either you don't have the gene or you have a mutated form of it.

        There are treatments for it though; hopefully your doc will get you started and your bleeding issues will improve.
        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          I just got back from my blood work (I forgot about it :P) They took 3 containers of blood and then realized they only needed one. Lovely.

          The woman then did the bleeding time test. That consisted of her ultimatly stapling a knick in my arm and watching it bleed all while having a BP cuff on my arm set to 40. She would "collect" blood that dripped every 30 seconds, using a special paper thing, until the bleeding stopped. It took me 8 minutes. And by the time she was done, my arm was blue and I couldn't feel it (because the BP cuff had to be left on the whole time).

          Anyway, I hope I get the results soon.

          Medical "Issues":
          IC
          GERD
          Tachycardia(resting rate is 125-130 )
          Medicastions:
          Tramadol-as needed (IC)-50mg
          Elmiron 200mg twice a day
          Levsin .125mg 1-2 pills 4 times a day

          Comment


          • #6
            Ouch! That doesn't sound like fun. I hope that you get the results soon and they can do something to help if you do have it
            Christine



            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus

            Comment


            • #7
              Still waiting for the results. In the mean time, I have a bit of a problem.

              The little cut that the blood drawing lady made on my arm is getting infected. It's rather deep because she "cut" me twice. The first wasn't done right so she did another next to it. Anyway. It's got little red streeks coming from it and it itches.

              I put some Neosporine on it and covered it with a Band-Aid. Here's the problem. I'm allergic to latex...wait, wait, it get's better I'm allergic to adhesive too . The Band-Aid was latex free, but it obviously can not be adhesive free. Either way, I broke out in hives a lot quicker than I usually do. So I had to take it off.

              So now I have a semi-infected wound and around that, hives .

              My question is, does anyone have any ideas how I can keep the cut away from germs and coverd. Maybe wrap gauze around my arm and tape the gauz (so there is no tape-skin contact)? Or do any of you know of sensative skin friendly Band-Aids?

              Thanks!

              Medical "Issues":
              IC
              GERD
              Tachycardia(resting rate is 125-130 )
              Medicastions:
              Tramadol-as needed (IC)-50mg
              Elmiron 200mg twice a day
              Levsin .125mg 1-2 pills 4 times a day

              Comment


              • #8
                I have very sensitive skin and I use Nexcare kids bandaids since they are made out of paper. They have Winnie the Pooh on them but because they are paper they don't irritate my skin. You could also get gauze in a roll and wrap it around your arm and only put a small piece of tape on top so the tape doesn't touch your skin.

                Comment

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