Just discovered I have a DVT after giving birth. Anybody got any advice/info/experience to share pls? Feeling a bit scared...

[zipzap]

I was diagnosed this week with a DVT at 5 weeks after having given birth, and 3 weeks after having suffered from thrombophlebitis.

I've been having the treatment - quite nasty injections in the stomach and warfarin tablets, and have just been signed off from the hospital to the GP. So no more injections, just warfarin tablets and lots more blood tests for the next 3-6 months.

I'm a bit scared as you hear lots of nasty stories about unhappy endings with DVTs, but haven't been able to do any of my own research as [in what is rapidly becoming a bad week] not one but both our broadband connections are down and not likely to be back on for between 1 and 5 weeks (that's a whole other issue to grumble about!). So having managed to borrow a few minutes on a dial up line, thought I would see if I could tap into the mumsnet collective wisdom to see if anybody had any first hand experience they could share.

Especially if they experienced any side effects or what they were told to do or not do. I have been told both to keep mobile and to avoid exercise, to eat healthily but not take any vitamins or supplements of any sort and to avoid certain foods including greens and cranberries, to wear a support stocking and to carry my anti coagulation booklet with me at all times.

I have also been told that I can carry on life as normal, just being a bit careful about cuts and bruises and situations where they might occur. But have also been told that previously I would have been in hospital for a week or two but they now treat it at home with you going into hospital to get injections, so that although I am at home, I am 'ill' and should do very little... (not easy with a 5 week old and a toddler!)

So all in all a bit confused - any advice gratefully received.

I was also wondering if anybody has carried on breastfeeding while taking warfarin? It has been such a struggle to start breastfeeding that I am loathe to stop and have been assured that it is safe. But then they say to watch out for bleeding or bruising on the baby and that makes me think that maybe I shouldn't be breastfeeding whilst effectively taking ratpoison tablets!

At least I have a good excuse not to eat my dark leafy greens at the moment which is something that I went off big time when pregnant and still really don't fancy . Which is a fairly small silver lining from what seems a very big dark grey cloud at the moment.

Thanks - sorry if this has been a bit long winded.

p.s. I won't be able to log back on to check this as regularly as I would like but hope to check back in a couple of days!

Not many people around right now. I can bump it for you in the morning if you like.

It sounds like you've got it all under control and if they say it's safe to take warfarin in breastfeeding then i'd say carry on.

Sorry you're having such a hard time of it, just when you need it least.

I have had two DVTs. My first one developed into a PE (pulmonary embolism) and I was treated with heparin then warfarin for 6 months.

After I had finished the warfarin, I became pg, and needed to inject heparin every day and a short period post partum. I then went back onto warfarin for another 6 months.

I breastfed successfully for this 6 month period whilst on warfarin. My DD is now a healthy 18mo. It doesn't pass through into breast milk, so there's no need to worry on that score.

Unfortunately, 8 months post partum, I developed another DVT, and was told I would be on warfarin for life.

I am actually back on heparin for the time being, whilst trying to conceive. You should bear in mind that warfarin does cross the placenta and therefore can cause birth defects, so make sure your contraception is covered (if sex is even on your mind with a newborn)

With regards to the green veg, etc. The idea is to stabilise your INR, and in my experience, there's lots of things that can affect it slightly. Just make sure you don't go from no greens one week, to the cabbage soup diet the next!

I have been on warfarin for about 3yrs, with gaps, and have never experienced any adverse effects, bruising, excessive bleeding, etc. The worst thing imo, is going to have the blood tests so regularly.

Have you had a thrombophilia screen to test for any predisposition to clotting? If not, you might want to ask for one. Also, google symptoms of DVT and PE so you know exactly what to look out for.

HTH

HI There

I developed a DVT at 24 weeks pg which they suspected turned into a PE.

Although the 2 heparin injections a day were a real PITA - esp since I was needle phobic - life basically continued as normal. I've got a 6 week old now and am on the injections for 1 more month (6 months treatment in total) This was preferable to switching to warfarin cause all the blood tests etc would do my head in and the heparin is pretty stable.

Some things I've been told:
Wear the support stockings all the time (I don't as they make me far too hot)
You can never go on the pill again
You should avoid long periods of inactivity and drink lots
if you want to get pg again you will have to start heparin injections from when you start ttc as the Warfarin will cross the placenta (as pointed out my Ramble)
Be vary careful of taking long flights, use the stockings.

Other than that, it's been ok, I did feel wiped out for the first 5-6 weeks after diagnosis but the clot shrank pretty fast and I had a lot more energy then, good luck to you and take care.

SM

Sorry to hear you're going through this. I've had DVTs due to a clotting disorder that I have. I was on Warfarin for about 15 years, and got pg whilst on it (which is a very bad idea).

I stopped Warfarin immediately and instead injected myself twice a day throughout pregnancy, and was supposed to go back onto Warfarin immediately after the birth. But I got conflicting advice about BF and Warfarin - the deciding factor for me was when I was told by one of the consultant heamotologists that 'very little Warfarin passes into the breastmilk, so don't worry about it'. Very little? My decision was that if ANY Warfarin passed on to my baby I simply wasn't prepared to take it. I stood my ground and insisted that I continue to inject for as long as they would allow (health risks to me, but none to my baby) - which was for 12 weeks. So I BF for those 12 weeks, and switched to formula after that.

Good luck with this! Warfarin isn't too bad once you get used to it. The main thing is not to change your diet/weight dramatically as it will affect the dosage.

Hi there. Sorry to hear you're going through this.

Like you, I had a post-natal DVT (10 days post-partum) and I think that's actually the most common time to have them. The main thing is that they have found the clot, it is stable, and you are having the treatment. It is very, very unlikely that anything bad will happen to you now - I think that most people with unhappy endings are people who don't even know they have a DVT.

I breastfed on warfarin for 6 months with no side effects at all - and DD1 was a premmie so potentially at greater risk.

Yes, I remember the conflicting advice about resting / keeping active!! I think the main thing is not to go overboard and just keep gently mobile. I had a very large DVT and 5 years on my leg is still more achey if I don't exercise it enough.

I am involved with a charity called Lifeblood www.thrombosis-charity.org.uk who publish a good factsheet on thrombosis and pregnancy, and are campaigning for more information on this issue. It's actually quite a common side effect of pregnancy and birth and I think pregnant women should have more information and less panic!

You may find that once you are off the warfarin, you'll be offered a thrombophilia screen to see if you have an underlying condition which predisposes you to clots. I don't have one, but they suggested that maybe I had a vein 'pinching' another vein which had caused mine. Where is/was your clot? Many pregnant and post-natal women have clots in the thigh or groin, and often doctors seem to be looking for clots in the calf which is not helpful.

bump

Hi Zipzap, I was diagnosed with a DVT when I was 9 weeks pregnant and had to inject twice a day for the rest of my pregnancy and for 6 weeks afterwards. I had no side effects at all and breastfed my DD while on clexane which is a low weight molecule heparin so not sure if its what your on. I was recommended to take gentle exercise i.e. walking or swimming but wasn't really given any more advice than that. I had all the blood tests done 6 weeks PP and thankfully there is no reason for my getting the clot but I will have to start injecting immediately if I get pregnant again (I wish) Good luck, take it easy and don't panic.

i have had four episodes

phlebitis is very painful - make sure you have painkillers

elevate your legs as much as you can - have they prescribed you compression stockings? These really help

you can BF on warfarin ...

Injecting is painful, but after a bath/shower seems to be a bit better (you will bruise like mad, but they will fade)

you shouldn't drink too much alcohol whilst on warfarin as it can mess up your INR

what i will say is that it sounds like they have caught it early and you are being treated in the best way

best of luck with everything