orangefoot

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!)

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/

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

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

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.

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

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

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.

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.

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.

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.

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

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.

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.

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

Go you! The first one isn't easy but it's one less to do! Did you look at my injection tips again? Use the lower part of your belly as much as you can at this point because you won't be able to see it or pinch any skin there in a few months' time:)

Hi Angela I'm sorry you are feeling pains where you shouldn't be. When you are pregnant your blood volume does increase but not dramatically at this stage. What does happen is that all your ligaments begin to soften and that affects your joints which could also affect the connections between the muscles in your leg that have been keeping things moving ok up to now. As your uterus gets bigger it presses on the vessels around the bottom of your belly and in your groin which can slow down the return of blood from your leg. I had a particularly unattractive varicose vein under my belly for months but it disappeared as soon as Frida was born. If they can't see a clot then all you can do is go back to the things you did when you first got the clot to see if they help. I can't remember if you wear compression or not. If you don't then you might want to get some or if you do, order a new pair that are nice and zingy. I always feel better with a new stocking and wonder why I didn't get a new pair sooner. Also, lift up the end of the bed or increase the height if you already have it up as this will help your leg drain overnight. Keep your legs up when sitting and try not to stand still or sit still for too long. Or it might be pregnancy cramp. There is loads online about this and things that help it. There are going to be twinges and oddness in your body as your belly grows and it does put you one edge but try to remember that it is very rare for anyone injecting Fragmin to have a clot and that you are now on a fast-track to seeing someone who will reassure you quickly if you are worried. And of course not everything is about PSD or our clots at all! Take care Rachel

It would have been nice if he could have said "Not yet" instead of "No" in his original response! I have read that the Einstein Extension is the sixth Phase three trial of Rivaroxaban and it has shown to be non-inferior or superior in all of them. I am not sure what is holding things up as warfarin isn't exactly the safest drug in the world is it?

Hi The normal period of time for post-partum injecting is 6 weeks. This is related to the time it takes for the uterus to return to normal size and the hormonal changes brought on by pregnancy to settle. It is the hormonal changes that affect the clotting of our blood so the thinking is that once things are 'normal' again we don't need to be injecting. Post-surgery injection period is 4- 6 weeks as well I think. When I was pregnant with my third I injected for 6 weeks then did nothing else. I had a DVT when dd was 8 months old and I too had been walking strenuously (trying to get to school to pick up older children in a rush!) so thought I had pulled something. When I had my fourth, I had been wearing compression daily for a couple of years. I injected for 6 weeks and then did nothing expect continue as I had before with the compression. Who knows why this stuff happens. Sometimes fate really sucks and you can't know if doing something different might have made a difference. How is your leg feeling now? Can you still get about ok? I hope so. I'll be thinking of you Rachel

Venous surgery is not something I've every been offered either. If your stocking is bunching at the ankle I'd say it is either not the right size or has worn out. Mine last about 3 months at the very most and I wash them by hand then dry over night in the airing cupboard. Your leg might be smaller now than it was when you first got stocking so you might need a different size. Have you tried cycling? It is good for moving fluid in the legs without having to bear the weight of the body as well. If you can get an exercise bike you can do a bit every day at home even if you can't cycle on roads where you are. Craigslist might be a good place to look for one. My left thigh is still larger that my right thigh but my right calf is bigger than my left! I think I've borne my weight on the left for so long that the muscle has got bigger whilst the DVT leg calf looks a bit slim and wimp-ish. It took me a good two years of serious work to get my left leg back to a reasonable size so that I could get a pair of trousers on and the combination of walking and cycling is what I did. Still though, if I try to get anywhere at super walking speed I get that dead weigh shoe full of foot feeling too.

Have you met the OB yet and asked them exactly which parts of the labour they consider to be high risk? This is what it came down to in my labour: the labour itself wasn't considered high risk but everything from the moment the babe was out and after the cord was cut (the third stage) was considered high risk. They wanted to prevent unreasonable blood loss and that would mean quick clamping, chemical assistance to detach the placenta and more chemical assistance to shrink the uterus and therefore shrink the site where the placenta had been attached. OBs will tell you that the scariest labours they have seen are the ones where there is unstoppable post-partum bleeding and this colours their judgement when dealing with pregnant women injecting anti-coagulants. It was explained to me that they can advise you all they like but as a patient you don't have to accept their advice and recommendations. They do however have to do what they can to support you. This is what Patient Choice is about. They can be 'active' during the third stage of labour and administer any drugs necessary in any room in the hospital if they have them ready as soon as you walk through the door and if more help is needed you are in the right place and can be treated urgently if required. The thing to do is keep talking to them and make sure they write down their concerns and their solutions to these concerns whilst taking into account your wishes. Oh and in between do enjoy being pregnant and try not to worry too much!

My second son was born in water and couldn't keep away from it as a toddler! I think you can argue that you want a homely birth room so that you can have a better labour with less stress regardless of your 'risk'. I was classed as high risk and under a specialist high risk team in Oxford but they still agreed to a home birth. I ended up in hospital with a tricky brow presenting babe and no progress after 36 hours with broken waters but I still got a nice comfy room with birthing ball, aromatherapy vapours, bean bags, windows and loads of space!

Hi Angela How exciting! I still saw my community midwifery team as well as having consultant appointments during both of my 'high risk' pregnancies. I think that they used to wait for a scan but in practice it can be quite hard to get to see a consultant for a long appointment to sort everything out at short notice, so it is easier for you to inject from a positive test then see them when they can fit you in. With my last pregnancy I had about 5 visits to the hospital in all but all the other appointments were at home with my midwives as I had booked a home birth. Not having to get to the clinic is another advantage of planning a home birth! During the hospital appointments they did all the same midwifery checks, urine dip, blood pressure, etc but a couple of blood draws for liver function tests as well. They also talked about how birth woudl be managed in terms of when to stop injecting and what they woudl do to stop bleeding post partum and that kind of thing. Quite often the midwives would put questions in my notes for the OBs team and the obs team woudl reply or ask questions themselves through the notes too. The pages got quite packed with all the to-ing and fro-ing. I only had one scan which was a doppler scan to see the blood flow through the cord and the placenta. I think that might have been at 24 week or so. I didn't have the ordinary 20 week scan because we didn't want to have it. Up front they make it sound as if things will be very medically-orientated but in fact once you are injecting there is less concern and you can go for weeks without seeing anyone at all just like a normal pregnant mummy. As for injecting, doing it yourself is better, honestly. Bite the bullet and do it! In case you can't find them elsewhere, here are my injecting tips for beginner. Once you have the hang of it you will be able to inject yourself in other people's bathrooms at birthday parties! Ask your GP surgery for a big sharps bin and also a smaller 'travel' size one too. Lie down and bend your knees so your feet are flat against your comfortable bed. Make sure the bubble is at the plunger end of the syringe not near the needle end. Hold the syringe like a pencil with your thumb and middle finger with your first finger on the plunger. The bevelled edge of the needle should be face up. Pinch a good inch of skin somewhere low on your belly - you'll lose sight of this part of your belly after a while so its good to use it while you can. At this point you might want to remind yourself to take a few breaths and relax. Poke your skin a bit with the needle. If it hurts a lot poke another place until you find a bit that doesn't feel too stingy. There are some places where the nerves seem to be more 'alert' than others - honestly. Once you have found a good place tilt the needle to a 45 degree angle and push the needle in as far as it will go. Now hold very still and press the plunger with your first finger as slowly as you can. Once you have pushed in all the liquid and you have only bubble left pull the needle out and let go of your skin. And keep remembering to breathe! Some doctors will tell you to remove the bubble but you can direct them this paragraph "Subcutaneous Injection Technique: Patients should be lying down and Lovenox Injection administered by deep SC injection. To avoid the loss of drug when using the 30 and 40 mg prefilled syringes, do not expel the air bubble from the syringe before the injection. Administration should be alternated between the left and right anterolateral and left and right posterolateral abdominal wall. The whole length of the needle should be introduced into a skin fold held between the thumb and forefinger; the skin fold should be held throughout the injection. To minimize bruising, do not rub the injection site after completion of the injection." which can be found at Sanofi Aventis prescribing info http://products.sanofi-aventis.us/lovenox/lovenox.html#Dosage%20and%20Administration'>http://products.sanofi-aventis.us/lovenox/lovenox.html#Dosage%20and%20Administration http://products.sanofi-aventis.us/lovenox/lovenox.html

I'm almost 38! Why don't you wear compression? My blood does go up other veins but if I don't wear compression it just stays in my foot and leg and hurts - a lot. In some ways you are lucky not to 'need' compression but wearing a stocking on that leg could hep prevent further clots as it will prevent your blood from pooling and clotting. In the past, people have asked me if I should wean myself off teh stocking I wear and let my body learn how to move the blood again. Those are folks who don't understand exactly what clotted vein and damaged-beyond-use valves actually means!!! The stockings don't stop your body trying to do its best: they help it do better.

It is my understanding that little people have lower levels of Protein S than adults in any case regardless of parental history and this makes testing at a young age somewhat unreliable. I spoke to the DVT clinic a few weeks ago about risks of surgery and the nurse told me that they don't consider an operation of under four hours with general anaesthetic to be a high risk of clotting issues. You could call your haematologist and ask him or her whether they would be concerned about your daughter's operation considering your family history and see what they say. My dd had a skin graft and they were no additional concerns re clotting in her case. Me being in hospital practically bed-bound with her for 10 days was considered a risk though and I injected LMWH for that time. I hope your little one's operation goes smoothly.