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Angela C

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Everything posted by Angela C

  1. Hi Lindsey My story is very similar to yours. When my dad died (1983) they thought it was a heart attack but now considering that I have PSD and my mum doesn't I must have got it from him the Dr thinks that it could have been a blood clot (a post mortem was never done so we'll never know for definate). Anyway, I had a DVT in Oct 2001 and was subsequently tested for PSD. I was on warfarin for about a year. My haematologist took me off warfarin and didn't really explain why and this worried me slighlty so I went to a different hospital for a second opinion. The haematologist there said that it was basically my decision if I went back on warfarin. The risks of having another DVT are about the same as the risks of long term use of warfarin. I decided not to take warfarin as I didn't really get along with it, like you it made me feel a bit nauseous, it made my periods really heavy and painful, and it wasn't doing much for my skin or hair. I worry sometimes about getting another DVT plus the fact that my dad died of this worries me too but unlike him, I know I have PSD and having had a DVT before I know what symptoms to look out for! I recently went skiing for the first time (and fell over a million times!) and I don't think I would have done it if I was on warfarin because of the risks. Ultimately you are the only person that can decide what you want to do as it's your life! Hope I've helped a little
  2. Don't be sorry - this place is all about asking questions!! I don't know much about acupuncture (or pregnancy for that matter) but I think that people in the health/therapy industry like acupuncturists have a duty to their clients to have enough knowledge to not put them at risk. When I wanted to go for reflexology, I was told that I shouldn't because of my DVT, she didn't want to get the circulation going too much incase it caused bits to break off!! Anyway, good luck with the acupuncture and the future pregnancies.
  3. Have you asked your acupuncturist? I would have thought that they should know who they should and shouldn't treat.
  4. When I was on warfarin I had very heavy and painful periods. This was one of the major reasons why I decided not to continue on warfarin, I really could not bear when that time of the month came round again. I never discussed it with a doctor but always assumed that the heavier periods were due to the warfarin, especially seeing as now I don't take anticoagulants, my periods are back to normal and are no longer too painful. Like writermama, I too find it hard to believe the two aren't related.
  5. Hello I'm sure you'll find this site very useful - I certainly have. Like you said, it's pretty rare so it's nice to talk to people that know what you're going on about!! Angela
  6. Maybe because people don't really know the answers to your questions. I asked a similar question a while ago. A lot of people wear medic alert bracelets so there must be some use otherwise people wouldn't bother. I don't really know if medics look for one but I would assume they do as that's what the bracelets are designed for.
  7. I am not on anticoagulants either. I had a DVT from knee to thigh in october 2001. I was on warfarin for a year after this, then came off for a while to have the thrombophilia screen. I went back on warfarin after discovering that I had PSD. However, I have now been 'anticoagulant free' for about 18 months. I was a bit apprehensive when my haematologist told me to stop taking warfarin so I went to a different hospital for a second opinion. The second haematologist said that the side effects from long term warfarin treatment are about as risky as the chance of me having another clot so it was my choice whether I wanted to continue on warfarin. I chose not to take it. Sometimes I think it would give me better piece of mind if I went back on warfarin but as long as I look after myself and don't get too dehydrated and keep active etc then I'm ok. I know that during periods of high risk eg long haul flights, pregnancy etc then I'll have to be anticoagulated but until then..........
  8. Diabetics can take insulin shots so I'm sure if you have a DRs letter then you should be allowed.
  9. I had my DVT in October 2001 and my leg is still significantly bigger than the other 'normal' one. I used to think that it would slowly return to normal size, but there has been no change in size for about 2 years now. My compression stocking helps to stop it swell more when I'm active and helps the aching but it is just something that I've learnt to live with.
  10. I remember when I first was in hospital with my DVT and had to have heparin injections for 5 days, it hurt so much, my stomach was bruised and sore for days....I'm so not looking forward to when I have children!!
  11. I would think that being on a low dose of anticoagulants means you don't need INR checks as your INR is going to be quite low. If you were on higher doses then you would need it monitored so it didn't get too high.
  12. Yes, I have this problem too, I cannot sit anywhere for any length of time without fidgeting a lot. I find it very uncomfortable. When I sit in the evenings and watch TV or something, I never sit with my legs down, I sit on the settee with my legs across it. I think this is just another one of those unfortunate things we have to live with....
  13. I went skiing in January and I fell over a million times (it was my first time!!). i'm not on anticoagulants so I wasn't at risk from bleeding. But had I spoken to my Dr beforehand, she probably would have advised me that it was best I didn't go (so i didn't consult her). Perhaps some of you aren't prepared to take these risks but I'm only 24 and refuse to let this condition rule my life, I have always wanted to learn how to ski and now I have and will continue to go every year.
  14. Hi I don' t think there's any definitive way of determining if you have a blood clot without the kind of tests that they do in hospital,like ultrasounds and so on. When I had mine I was really short of breath and I had a pain in my groin like I had pulled a muscle. I collapsed one day at home, the Dr came round, took one look at my leg ( which was twice its normal size) and said 'you have a blood clot'. Don't really know if this answers your question. If you are worried you should always check with your Dr.
  15. In hereditary PSD it does not skip generations, there is a 50:50 chance of it being passed on. If it is not passed on to you then you cannot pass it on to anyone else as you will not have that gene. Perhaps yours is acquired PSD.
  16. Hi Lorie, I don't think there's a fixed age when they test for PSD but I don't think they do it until late teens. Birth control and HRT and stuff like that are not a good idea because of the oestrogen in them (I think). I think most people on this site wear medic alert bracelets, a question which i actually asked a while ago. I don't wear one but that is my choice. As for where you can get info from, you can probably find out pretty much all you want to know by searching old topics on this site or just asking new questions. I hope this helps a bit! Angela.
  17. Hi In my experience its best not to take the pill when you have PSD. I had my DVT when I was 20, I had been on the combined pill for about 3 months. I have been told never to take the pill again and not to take HRT when the time comes. However, the mini pill which doesn't contain oestrogen is apparently ok to take but after my last experience I have decided not to risk it at all!!
  18. Hi, my leg is still swollen from my DVT which I had in Oct 2001, I was hoping that it would have gone down by now but it looks like it's not going down any time soon. Anyway, I too work in a restaurant (also temporarily!) and at the end of every shift my leg is swollen even more, wearing my stocking helps a little but does not stop the swelling altogether. I'm not on anticoagulants so it does worry me some nights when it hurts more than others but I have come to see it as one of those things I just have to put up with......and just hope that some day it will be back to normal. Angela.
  19. hi, i was told that the gene for PSD is dominant and you only need one parent to have it to pass it on to you. so, if its dominant surely it cannot skip a generation and then be passed on because if someone had the gene they would have PSD?? does it mean that they still have PSD but just don't show any symptoms ie clots??
  20. my protein s levels were 15 when i had my last test so 49 doesn't seem that low! I really hope that you get things sorted out, I know january seems miles away to you but Im sure your dr will help you. good luck!!
  21. hi! i have not had my homocysteine levels checked but do take all those vitamins at the instruction of a haematologist! i don't take anti coagulants so i like to take the vitamins to try to reduce the chance of another clot
  22. hello bookie, i understand what your daughter is going through, i was 20 when had a DVT and spent two weeks in hospital on a ward with no one under 60, all telling me how young i was. i'm now 22 and have been diagnosed with PSD, my DVT was also caused by the pill, i too did not know my family history until it was too late. there are quite a few people on this web site that are quite young, maybe your daughter should log on and talk to us if she has any questions.
  23. hi, i have psd and have had a dvt due to being on the combined pill. i have been told i can never take it again. however, i have seen two different haematologists and they have both said that i can take the mini pill. its totally up to the individual to choose to take the pill or not, i have chosen to take the mini pill as i'm not ready to start a family yet and to me the risks of getting pregnant far outweighs the risks of being on the mini pill. but as i said, it's up to the individual.
  24. I've just found out my Protein S levels and don't really understand them. I've had three tests now and the results were 10%, 12% and 15%. I've looked in the archives (only briefly though because there is so much to read!) and I can't find anyone with levels that are percentages. I found that the normal range is supposed to be 66-112. Does that mean 66%-112% ? and if so, does that mean mine are really low? Do levels of 10% mean 10% activity ? I don't understand!
  25. Hi, I've only recently been diagnosed with PSD and everytime I read this forum, something else worries or confuses me! Are the fibroids caused by the PSD or is it just coincidence??
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