Angela C

I took fragmin and asprin during my pregnancy. I started the fragmin at about 7 weeks and I had regular scans to check the flow of blood to the placenta and baby. I can't remember when it was (between 14 and 20 weeks I think!) I had a scan which showed slight resistance from one of the arteries going into the uterus (I think!) so I was also put on aspirin at this point until 36 weeks. My LO is now 19months old and perfectly fine.

Hi Angela I don't have any experience with fertility drugs so can't offer you any help on that topic I'm afraid. I'm sorry that your doctors seem to have made you fear for your life expectancy, as far as I'm aware there is no need for that! As long as you are properly monitored and aware of your condition and the dangers that come along with it ie DVT then there is no reason to suggest that your life expectancy should be any different! You don't say where you live but I'm guessing it's not the UK? I live in the UK where I don't think it is normal practice to offer LMWH (lovenox etc) unless you are actually pregnant. I am currently 31 weeks pregnant and have been on fragmin (similar to lovenox) since about 6 weeks. However, when not pregnant I do not take anything. I wish you well and hope that you get the baby that you're praying for Angela

Yes I looked at your tips I find that the lower tummy hurts less and bruises less that the upper part. Not looking forward to when I can't reach that bit but I've got quite a while until I'm that big

Hi Rachel, thanks for your reply Yes, I'm wearing stockings, I have three new pairs which I have been wearing pretty much constantly since I was about 5 weeks. The strange thing is that my leg starts to ache more as the day goes on and my injection is due (I do it in the evenings). It doesn't seem to make any difference whether I'm active all day or if I've spent all day resting (I'm getting some bad nausea days where I haven't managed to drag myself off the sofa ) On a slightly different note I managed to do my own injection last night normally hubs does them but I was a brave soldier and did it myself

So I'm 7 weeks pregnant now and at the weekend I started to get quite bad pain in my leg that I have previously had a DVT in. I went to A&E to get it checked out and was given a higher dose of fragmin to take over the weekend and had to go back on Monday for an ultrasound on my leg. Anyway, they couldn't find any new clot in my leg, he said he could see evidence of the old clot but new ones are normally really obvious and he couldn't see any. So I'm back down to my usual dose of Fragmin and that's that. But I am still getting pain in my leg, it's in my calf and I just don't know what is causing it. Has anyone experienced pain where they've had an old clot before? Could it just be that now I'm pregnant I've got a greater blood volume that is making the old damaged veins and valves work a bit harder so it's getting a bit congested? This pain started two days after I started on the Fragmin so I'm wondering if it's starting to dissolve the old clot a bit? Is that possible? I had this DVT 10 years ago and I've never experienced any pain like this since, I get the odd ache when I've been on my feet all day but nothing like this.

Thanks for your reply Sally. No, I don't have a problem with getting the injections, a while ago I went to my GP about getting them for long haul flying and I also mentioned pregnancy to her and she didn't seem to think I would have any need for flying or pregnancy , but I was told 10 years ago when I had my DVT that I'd need heparin throughout pregnancy. Luckily the haematologist I saw recently agrees. I live in Wales so prescriptions are free anyway I have a load of questions that I should have asked the haematologist at the time but I forgot! If you're classed as high risk does this rule out water births? I will definitely be following orangefoots instructions come injection time - I recently flew long haul and I told myself that I was going to do the injections myself to prepare myself for when I have to do it everyday, but I bottled it and Hubby had to do it again

Thanks to your both for your replies I am quite excited but also quite daunted at the prospect of TTC and not just because of the PSD, just in general! The less appts I have at the hospital the better as the one where the haematologist is based is 45 minutes away, mind you it does mean I get a paid half-day off work My haematologist did seem to suggest I would have quite a few scans though. I guess I'll just see what happens

We are going to be TTC in a few months. I have been PSD and had a DVT 10 years ago, I have recently been to see my haematologist about TTC and she has said that I need to ring her as soon as I get a postive test and I can be booked in for a scan and start the LMWH injections. They will then monitor me closely at the hospital having frequent scans and appts. My question is will I also have a local community midwife like 'normal' pregnancies or will my care just be hospital based? I live in the UK, can anyone tell me their experience? Also when do people start the injections? I thought it was once you'd had a scan at 6/7 weeks and the pregnancy was 'viable' but my haematologist has already given me a prescription and I have some at home already? I am really not looking forward to injecting daily, I have them when I fly long haul and I'm such a wimp I can't do it myself, hubby has to inject me in the departure lounge (god knows what people think we're doing) but I suppose I'll have to learn to do them myself sooner or later.

I have PSD and have had a previous clotting episode (DVT in 2001). I have flown to America a few times over the last few years (8 -10 hr flights) and have had heparin prescribed for me. I currently take no anticoagulants, haven't done for about 6 years but when I was diagnosed the haematologist said that at times of higher risk, ie pregnancy, prolonged bed rest, flying etc I should take some form of anticoagulant. When I went to my GP about 2 years ago to get my first heparin prescription for flying she had never heard of PSD either and actually googled it while I was there and came across this site (I was just hoping she wouldn't come across any of my posts!). She wasn't entirely convinced that I needed the injections as she didn't seem to think that flying was a high risk activity (but she didn't think pregnancy was either ) but in the end she gave me a prescription because she said that it wasn't going to do me any harm and it would give me peace of mind! I also do the things that everyone is recommended to do, whether or not they have a clotting disorder, such as drink lots of water, exercise and wear my compression stockings.

As far as I'm aware, oestrogen is a no-no if you have PSD but progesterone is ok. This is what I was told ages ago anyway. I can't take the combined pill as it contains oestrogen and progesterone but the mini pill is ok as it only contains progesterone. I would definately recommend that you speak to a haematologist to make sure that whatever you use is safe.

Along time ago one haematologist told me to take B vitamins and folic acid. Found this on internet.... 'Blood clotting is also slowed down by the presence of the vitamin B6 in sufficient levels in the blood. Supplements of the vitamin B12 along with the folic acid will lower the homocysteine levels in the blood. A balanced combination complex or formula is the best way to take the vitamins B6, B12 and the folic acid as long as supplementation is intended'. 'Homocysteine is an amino acid in the blood. Epidemiological studies have shown that too much homocysteine in the blood (plasma) is related to a higher risk of coronary heart disease, stroke and peripheral vascular disease. Other evidence suggests that homocysteine may have an effect on atherosclerosis by damaging the inner lining of arteries and promoting blood clots. However, a direct causal link hasn?t been established. Plasma homocysteine levels are strongly influenced by diet, as well as by genetic factors. The dietary components with the greatest effects are folic acid and vitamins B6 and B12. Folic acid and other B vitamins help break down homocysteine in the body. Several studies have found that higher blood levels of B vitamins are related, at least partly, to lower concentrations of homocysteine. Other recent evidence shows that low blood levels of folic acid are linked with a higher risk of fatal coronary heart disease and stroke'. I was rather confused by the advice from my haematologist as my problem was PSD not high homocysteine levels! I have since seen a different haematologist who didn't mention anything about taking any vitamins etc.

Hi Alan I too have had a DVT and have been diagnosed with PSD. This all happened back in 2001/2002. Since the end of 2002 I have not been on any anticoagulants. When my haematologist first suggested I stop taking the warfarin I was a little worried and actually went to a different hospital for a second opinion. The second Dr, said the same as the first really! There is a risk associated with having PSD and not being on any anticoagulants but also there is a risk of being on long term warfarin. The haematologist told me it was about 50/50 and the choice was mine. I chose not to take warfarin as I suffered with a few side effects when I was on it. Plus, if I was on warfarin I would have to be careful all the time not to cut/injure myself and that limits activities that you can safely partake in such as skiing!! Also I was 21 at the time and couldn't face the prospect of the rest of my life like that!! I was told that if I had another DVT then it would mean warfarin for life. I have had no further clots whilst not on warfarin (touch wood!). I do try to make sure I keep hydrated by drinking lots of water and avoid long periods of immobility. I was advised that I may need anticoagulants at certain risk times during my life such as long haul flights, pregnancy and long rest periods ie after operations etc. This summer I flew to New York (from the UK) and was given heparin injections to cover me for the flights, my GP was unsure whether I actually needed them or not but it gave me much better piece of mind! Anyway, I've rambled on for quite a bit there, hope I've answered some of your queries Angela

Yes, I am no longer allowed to take the birth control pill - I was taking it when I got my DVT but then we didn't know that I had PSD. PLus, I have been told that I will not be able to take HRT when I'm older. I 'm hoping that by the time I get there (I'm only 26) they maybe will have come up with and alternative therapy! I have also been told that when I am pregnant I will need to have heparin injections throughout the pregnancy. Protein S Deficiency is a form of thrombophilia, it makes your blood more likely to clot than 'normal' blood. Protein S is a protein that is involved in the clotting cascade, it works with another factor in the blood to prevent clotting when not needed. Therefore, a deficiency in this protein results in an increased tendency to make the blood clot. However, you mentioned that you have been tested for blood disorders and the Drs said this was not what caused your DVT, so I would imagine you have been tested for PSD. Like, Rachel said you are at the start of a long road but it does get better!! Angela

Hi Sally I understand how you feel, it is all very confusing! Like James, I have heriditary PSD however, I do not take blood thinners even though I have had a DVT back in 2001 (but thankfully no PE). Have you been told the reason why you got the clot? Do you have a clotting disorder? You say that you have pain and swelling - do you wear compression stockings? I wore mine every day for about a year or so after my DVT but now only wear them if my legs swells up or starts to get a bit achey. I'd like to tell you that the pain stops but I had my DVT nearly 6 years ago and I still find my legs ache/hurt at times. The leg that I had the DVT in is still swollen and I'm not sure that it will ever go down. It is interesting what James says about the clot being reabsorbed into the body and damaging the valves, I wasn't aware of this but I suppose the same has happened to me. I also get cramps sometimes, especially if I've had alcohol, I guess it's to do with dehydration. It is something that I have to live the rest of my life with, but I'm only 26 and I refuse to let it affect my life. Apart from never wearing skirts now, I live my life exactly the same as I did before. However, I must point out that I'm not on anticoagulants so do not have the side effects of that to contend with! If you are on blood thinners then they do advise that you try to avoid contact sports/activities where you could bruise/damage yourself because of the risk of bleeding associated with the medication. I assume this is why they have advised you to find another job. I have never had an issue with my DVT when trying to get jobs, I have a moderately physical job now where I come into contact with large animals and I do just fine, it wasn't an issue to my employers. I was given a choice after my DVT whether to continue with the blood thinners or not. The Drs said the risks of me being on anticoagulants for life were about as bad as the risk of getting another DVT, so it was a 50/50 choice. I chose not to take the blood thinners. I think everyone's case is a little different which is why Drs don't have definitive answers about what we should do, what will happen etc. Angela

Just to add to what James said - I have no trouble getting health/travel insurance with my PSD. James's history may be more severe than mine but I have PSD and I have had one DVT and I've still managed to get life insurance for my mortgage and travel insurance with the conditions covered.