Hyacinth

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About Hyacinth

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  • Birthday 03/10/1971

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  1. I have semi-insomnia. It is like I am always awake!
  2. I have VWd and questionable PSD. My levels are only slightly lower while pregnant, and basically normal while non-pregnant(or so I have been told). I do not have the exact levels while non-pregnant, but I was told I was alright. However I still seem to have clotting problems while non-pregnant, even with the VWd(which should protect me somewhat).I believe everyone's system is different. If you have not had any problems so far, I do not think they would recommened putting you on blood thinners.
  3. Thanks for that article James. Just recently a younger cousin of mine was diagnosed with Lupus. She is from the same side of the family that I inherited PSD from. I am passing on the link to my mother who can hopefully pass it on to my cousin.
  4. I have taken aspirin a good part of my life, and the only time I stopped taking it regularly was after they found out I had a bleeding disorder. I then had a stroke episode, and I self medicated with aspirin, which always helps within 20 mins, back to normal after about 2 hours. Aspirin has always been a life safer for me. One doctor told me that it was just fine to take aspirin if you thought something was happening, i.e. a clot or stroke,etc. It can't hurt you basically. For cramping in the legs caused by clots, I usually take a combination of aspirin and paracet. Works wonders. I always have a bottle of the stuff handy, just in case I feel like I will die.
  5. How sad! She was such a nice person. Rest in Peace Zarin. We will miss you.
  6. I have flown for long flights with my needles and always took the injection an hour or two before the flight, and had the injections in a hardcased makeup case in the cabin of the airplane with me. I had a note from my doctor and informed the cabincrew and security people that I had them with me. Once I forgot to inform one security checker and he pulled me aside and asked what it was I had in my bag....oppps. So make sure you inform everyone that you have them.
  7. Hi Sandy, Alright. I suffer with anemia at times too, but take a dose of iron every day. there are brands that are easily absorbed. slow-fe they are called I think. Hope your results come in soon and they can give you some help!
  8. After looking on Wikipedia about the cephalic vein, I am almost certain that is the vein that was enlarged. It seems surface veins can get clots in them as well. Up-close pictures of the veins of the arm: http://en.wikipedia.org/wiki/Cephalic_vein In the leg: This is where I recently had a small clot form! http://en.wikipedia.org/wiki/Small_saphenous_vein
  9. Hi Sandy and Lisa, Sorry you are having these problems too! All I can say is just keep pestering your doctors. Do you suffer from varicous veins? I recently developed them this past year. My mother said she developed them while pregnant. My mother hemorraged alot(while pregnant with me as well), and lost a baby as well. They do not know why, but it might be von Willebrand's....but it is her side of the family that passed on the PSD too. I have been just diagnosed with von Willebrand's disorder, where you bleed too much. The past months have been very bad for me, stroke, things that seem to be clots in the veins and sever pain in my left lower leg, swelling of the left leg and arm(same arm that I am sure I had a clot in many months ago)! My doctor has no idea what is up with my system. I am now going to get checked out by my gynecologist to see if I have bleeding inside the womb/endometriosis or cysts. Just have to keep looking for answers... Oh and I was put on blood thinner aspirin(Albyl-E) for the stroke symptoms. It really helps the pain and clots. I just take 2 or 3 times more what is prescribed depending on how sever the symptoms are.
  10. Usually you would start treatment as soon as you know you are pregnant, or when you find out that you have PSD. I would talk with your doctor about it. But as long as you are on treatment now, you should be fine! Just for further pregnancies, make sure you start treatment earlier than 24 weeks!!
  11. Aspirin can be pretty dangerous, so be careful! I actually stopped taking my aspirin while waiting on test results to see if I should be or shouldn't be taking an anti-coagulant. (On advice from the doctor) Have you asked your doctor what you should do until you get your results? I took aspirin as a precaution for MVP, not for the anti-coagulant effect.
  12. Zarin, My mother and her sister's all had hysterectomies early. They suffered from pain, growths and bleeding. My sister has considered a hysterectomy(not from the standpoint of a bleedin disorder though), and they will not allow her to have one! I guess you have to have a really good reason to get one at times. Do you bleed abnormally now? or do you not get it checked since you are not on any medication now? There seem to be many reasons why people bleed too much...I get a headache trying to figure it all out!
  13. Orangefoot, Congratulations!! Frida is so lovely in her sling. Glad to hear everything went well with the birth.
  14. Onna, He is so cute! Love his chunky face. Crowdermom, OMG! She is adorable! I love her face as well. She looks kinda like me when I was a baby. I am a redhead. hehe... Here is a new picture of Holly. She just turned 1! She keeps me very busy. She is skinny still and very tall. Most people think she is 2 years old. http://img.photobucket.com/albums/v220/Wol...2partycrown.jpg
  15. My gums and tongue bleed sometimes. I took aspirin reguarly as a safeguard against MVP complicatations and for PSD. Aspirin can cause bleeding if you take too much of it. It can be your medication causing it. But it is always best to check out that you do not have any gum/teeth/mouth problems. Visit your dentist regulary(twice a year if possible) and he/she will be able to answer your questions more than likely.