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  1. Hi Lois I had my first clot at age 30. Lots of people with PSD have clots in early adulthood so you've done well to get to your 70s before having one. That said, its a shock at any age and having to make accommodations in life is harder the older we get. There's a thread here on the forum where people have posted where they do and which doctors they see. It's a bit old but specialists tends to stick around so have a look there and see if ether is anyone close to you. Wearing compression is good and keeping moving is also good. In the beginning I kept my leg up as much as I could, mainly because it hurt if I didn't! . Any time I sat down I rested by foot on something to my foot was in line with my knee. I lifted the end of my bed so that my foot was higher than my hip when asleep and that way I started the day with a pain free and slim-ish leg. This will help your varicose veins as well as general swelling in your leg. It took years to reduce the swelling in my leg and now I still wear compression because I have what's called Post Thrombotic Syndrome- basically I still have pain if I stand for 5-10 minutes without compression. I can manage a shower then I really have to put my stocking on to go about the rest of my day. As there's nothing we can do about the PSD, the anticoagulants are our shield and everything else is about reducing pain and swelling so that we don't feel limited. Elevation, compression and movement at the things to focus on and bearing weight on your leg to make the 'foot pump' vein in the sole of the foot do the work to push blood back up the leg. I hope some of this helps. Although it can feel lonely and bewildering, you are not alone on this journey. If you are struggling to put stockings on this is a good way to do it. (I think her stocking is loose so easier to get on though!)
  2. Hello and welcome! Have you had a clot? Is that why you are taking Pradaxa? I take Pradaxa to reduce the risk of having another clot. I have Protein S Deficiency and had a long ankle to groin clot in 2003. There isn't any treatment for PSD and usually you will only be prescribed anticoagulants like coumadin, warfarin, Pradaxa, and Rivaroxaban when you have had a clot and it is likely that you may have another. The only trouble I have with Pradaxa is remembering to take it twice a day! I have an app on my phone to remind me and that helps. This forum is anonymous but if you don't mind being known by your name and friends seeing your posts about PSD you can join our facebook group https://www.facebook.com/groups/2506274438/
  3. Hi, I'm glad you have found each other! From what I have read, LA is associated with Antiphospholipid Syndrome (APS) also known as Hughes Syndrome so you might find more info on it by searching with that name. It is an acquired thrombophilia and PSD is a genetic one so you have been a bit unlucky to end up with both. Even with both these conditions you might not have had a clot but adding hormonal contraception probably tipped the balance. Have you been given good advice on contraception without taking the pill? This is a really long audio of a couple of hours but well worth listening to while you're doing something else! It is all the speakers at the Hughes Syndrome Foundation patients day last year and they talk about causes, treatments and outlook for patients, some of which might be useful to you. https://www.youtube.com/watch?v=7dKM-DjQIuo
  4. Hello again! I don't know about aspirin and heart problems but I know that aspirin isn't necessary if you are injecting LMWH for Protein S Deficiency in pregnancy. If you were to plan a new pregnancy that would be something to talk about with your OB team and see what their advice is. I'm glad to hear that your daughter is well. My Frida is going to be seven next week and has had no problems with her health from me injecting LMWH during her pregnancy. Time flies doesn't it? Rachel
  5. Me too, I was away from home for a fortnight last year eating out every night and not eating much green stuff. My INR was way too high when I was tested on a day I popped home after a week so I bought bagged baby leaf spinach and watercress salad for lunch for a couple of days the following week and got it back to normal again. Thankfully getting back home and eating 'normally' again settled everything down.
  6. I've been reading about rivaroxaban and risks and such and wondering if I might end up just having to keep taking warfarin rather than changing. What bothers me about warfarin in the long term is that it it inhibits Vitamin K2 which is the vitamin that makes calcium move from your blood to your bones where it should be. There is increasing evidence to suggest that it is a lack of Vitamin K2 which exacerbates atherosclerosis as the calcium stays in arteries and doesn't move to the bones. When we start taking warfarin we are told to restrict our consumption of vitamin K rich foods which leaves us without any of it's beneficial actions. It is possible to consume Vitamin K rich foods and take warfarin but if you aren't eating anything green at the moment you will need to talk to your doctors about this and perhaps go back to more frequent testing to monitor its effects. This is an interesting article which draws on theories that taking Vitamin K supplements can even out INR. Several people have posted on the Facebook group saying that their INR is not well controlled and I wondered if this might be something to discuss with our doctors as it may be beneficial in protecting our bones and our arteries as well as managing INR. http://www.lef.org/magazine/mag2007/jun2007_report_vitamink_01.htm HEMOSTASIS, THROMBOSIS,AND VASCULAR BIOLOGYVitamin K supplementation can improve stability of anticoagulation for patientswith unexplained variability in response to warfarinElizabeth Sconce, PeterAvery, Hilary Wynne and Farhad Kamalhttp://bloodjournal.hematologylibrary.org/content/109/6/2419.full.pdf
  7. For those of you who would like support without sharing this with your friends, come here and ask whatever you feel you want to ask or share what you want to share. If we all pop over here once in a while we'll be able to support each other here too. Rachel
  8. Hi James I'm glad you are noticing a difference when wearing compression and I'm sorry you're feeling cold. Maybe the foot sweats and the sweat is sort of stuck in the stocking so cools down or something but I know what you mean about being chilly. You need some wooly socks for when you're at home to keep your feet warm! I'm wearing some angora socks right now and they're great. I'm still wearing Juzo Soft which are comfy and fit my leg better than Medi did. From info on their website they do wide or long foot fittings as well as short leg for below knee and thigh high so they might be worth a look. http://www.juzo.com/uk/products/compression-stockings/juzor-soft/ YOu can buy tehm direct if you ring them and they are a bit cheaper than Sigvaris of Medi.
  9. Finally! NICE Guidance has been released recommeding Rivaroxaban for long term prevention of DVT. I talked to the Haematology team locally about whether or not I could have it instead of warfarin and they said yes, ask my GP. So I asked my GP and she says she'll have to talk to the Primary Care Trust as she can't make a decision like that. Ho Hum. I reminded her that the Guidance allows 3 months for implementation so I will be needing her to find information on dosage and any additional testing that may be necessary before then. I love the phlebotomist at my clinic but I will be so glad to live without her soon.
  10. I wasn't workign when I had my DVT but I did go back to university not long after. At that time I could not sit for long without my leg raised even with compression so I always had an extra chair to put my leg on and that was accepted without any trouble. When I went back to work teaching I spent my time standing and moving about so the sitting wasn't a problem. I haven't 'declared' my problem at work but have shared with colleagues mostly because they noticed the compression stocking! Now I work in our own business so there are no issues at all. I think I would need to talk to a future employer (should I ever need one) about regular INR testing though as I'd be missing work to go for tests. I'd also tell them that the chance of me having another DVT and being incapacitated are very small now that I am on warfarin but I'd probably give in and get a medic alert bracelet too in case I had an accident at work. I am assuming that you are not in the UK so I'm not sure what your Health and Safety at Work policies or Disability Discrimination protection is where you are. I think an employer here would have to accommodate any physical or medial needs of an employee but that may not be the case where you are.
  11. Hi Mia I think GPs are still a bit flaky where PSD is concerned but hospitals have really upped their game and are much more proactive post surgery for everyone regardless of whether thay have a genetic risk or not. I recently visited my MIL in hospital and everyone on her ward had TED stockings on. A midwifery fried of mine says that in her unit they now put TED stockings on all new mums who are in hospital for more than a day too which is great news. It sounds as though the Hemo team are working well for you and I hope you can get a good overview of everything soon, as you say.
  12. Hi Katy It's good that they took care of his clotting risk during surgery but it's bad that it didn't fix the problem. I hope you find a surgeon with a plan B and things get better for Harry soon. My sister is now 35 and still hasn't had a clot despite being hetero for PSD just like me. Harry has the same chance of never having any problems as she does so here's hoping that he is lucky too. Rachel
  13. It may not be this way for ever. I thought all kids had lower than adult protein s anyway? How many kids do they test? If the end result is more cautious treatment after his operation which will ensure he doesn't get any clots at all then that is a good thing for now but I'd be hoping that as he gets older he's still got a 50/50 of not ending up with it by his 20s. I hope everything goes smoothly and he recovers well. Sending your child into surgery is never nice and five hours is a long time to wait for news. I'll be thinking of you.
  14. Eek! That's high. I've had peaks of about 3 and a bit but nothing higher than that. I know this sounds obvious but have you eaten anything seasonal that has made a difference? I eat more greens in summer than winter and that changes my INR downwards but it is still within range of 2 -3 so they don't change my dose. I hope you can get stable again soon as I can imagine that blood in your urine is a scary thing to see.
  15. Indeed! When I got bigger I went round to where your hands are when you put them on your hips and that didn't bruise badly either. I didn't do anywhere above my belly button unless I was desperate and then only if it didn't hurt when I poked about. Happy days
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