Has anyone else suffered from pregnancy-related DVT?

[katmam]

Hi,

Last year I had a DVT in my left leg at 10/11 weeks pg with dd2. I had to inject myself daily with heparin until dd2 was born and then took warfarin for 3 months. I had a "batch" of blood tests sent away for analysis to see if there was anything in my blood which pre-disposes me to clots, but all the tests came back all clear (which is great but ...)

I was wondering if anyone else has been in this position (or knows anyone who has), and gone on to have another baby - did you have to inject all through the pg or were you just closely monitored throughout?

I'm not sure if I'd rather just "wait and see" what happened if I got pregnant again, or if I'd rather be put on preventative medicine as soon as I found out I was expecting.

I'd really appreciate hearing from someone else who's been through this. Thanks.

Dear Katmam

Don't know if you'll read this - sorry that I only just found this post today (having thought about putting the same sort of post up myself).
I had a post-natal DVT with DD1, and had heparin for a while then warfarin for 6 months. Like you, I've been told I don't have any predisposition to clots, but that I'll need a daily heparin (fragmin) injection if I decide to go ahead with another pregnancy. I think this is probably a good plan, as the test just prove you don't have a general tendency towards clotting, not that you don't have a tendency towards it in pregnancy. I know a couple of people who've done the injections and come through fine with no recurrence, but can't decide myself whether to go for it or whether the worry will be too much! Do you have outstanding pain and swelling in your leg normally? Mine is larger than the other now, and achey anyway, and the circulation in it is clearly dodgy, so I think I'd want the heparin to make sure that that doesn't cause another clot. I think that there's a fair amount of dried clotting stuff left behind after a DVT which make the circulation worse and might lead to another one.

Hope this is helpful to anyone who reads it. I'd really like to see more information around about pregnancy and post-natal DVT as it's more common than most people think. When I had my clot, I really felt the need for impartial information, rather than panic, which is what I got from most doctors, midwives etc! Like you, I was desperate to talk to someone else who'd been through the experience, but didn't meet anyone else who'd had one until much later on.

Katmam - Like Bramshott -just seen your post. I had a DVT in my left leg (above the knee to groin) at 32 weeks with ds1 6 years ago. Was in hospital for 2 weeks with a heparin drip then discharged with the daily fragmin injections until 6 weeks after the birth (Fragmin was the new treatment at that time, I was told). Like yours, my DVT was purely pregnancy related, although I've had no recurring pain etc in my leg since then.

I have since had another son - 10 months ago. Spoke to my GP prior to becoming pregnant and his advice was that it shouldn't automtically prevent a 2nd successful pregnancy. As soon as my pregnancy was confirmed, I was allocated to shared care between my midwife and the hospital consultant due to the previous DVT, although all my routine appts etc were done via the midwife. My pregnancy was complicated ( for the medical professions - not for me) by the fact that this was my 2nd breech baby meaning a 2nd c section).

During my second pregnancy, I was put onto daily heparin injections (tinzaparin) from 28 weeks to 6 weeks after the birth. With tinzaparine, no need for regular blood checks etc. Following the birth, they increased the dosage big time and I had to wear those bloody awful white socks (Arrgg!!)

So yes you can have another baby following a DVT in pregnancy, although do think its worth while just checking your own situation out with your GP. I now have 2 beautiful boys. HTH

Hi Katmam, I had a dvt in my first pregnancy (at 32 weeks). I have had 2 other children since and am now pregnant again. Each time I have had to go on Clexane/heparin from 24 weeks and warfarin after the birth. Also have the awful stockings!! They say that clexane should stop another dvt, although the risk is slightly higher than for people who haven't had a dvt. It doesn't stop me worrying with each pain I get, but they are very good about checking out any pains straightaway. hth.

Pollyanna - so what happens if you're already on heparin and you have leg pain? You say they checked them out straightaway, but what did that involve? Was there lots of sitting around in outpatients departments?

I'm still trying to decide whether to go for it with another pregnancy, or whether I'll be in casualty every day with imaginary leg pains!

When I had a scan to see what the inside of my artery was like now (post-DVT), the guy who did it said (in one of those doctor-style throwaway comments) that it would be very difficult to tell if I had another clot at some point, because of all the dried clotting material that's in the vein already. So that made me wonder how they'd be able to say whether any pains in a future pregnancy were down to a clot or not, and how they would check?!

Any advice gratefully recieved . . .

Hi i had a dvt three weeks post-natally i had been in hosp as little boy was in SCBU limped around for days thinking i had a sore hip but turned out to be a full leg and pelvic DVT.
I absolutely freaked out was complee mess about it for months. I was on wafarin for 6 months. I am now at ten months. Leg still slightly larger and aches randomly have been to GP three times since coming off in a panic. Hate that it happened to me as i was paranoid about them anyway and wiggled my legs all the time.
Now i am terrified of having any more children incase it happens again cant bear the thought that i mighn't be so lucky next time and leave my son and future child with no mother if any on sees this does that feeling of fear go away

Dear Flic23

Wow - your situation sounds SO like mine that it's uncanny! My DD was also in SCBU, I also had hip pain and hobbled around for a week or so before they took me seriously. Also had a lot of trouble trying (and still trying) to get it all in proportion and not end up in casualty weekly!

As you've probably read from here, I'm still trying to decide whether to go for another pregnancy or not - or whether I'll worry too much and turn into a neurotic wreck for 9 months (quite apart from fear of dropping dead)!

It's now nearly 2 years since I had my DVT, and I think that maybe I have got it better in perspective now. Some days I hardly even think about it, but some days I obsess about it quite a lot, but that's just the type of person I am, I guess! Some of the things I think on my good and rational days are:

• I'd probably always regret it, if I let the fear put me off having another child.
• with heparin injections, your risk is probably just as low as that of someone who hasn't had a DVT and therefore isn't on heparin
• at least they'll take me seriously next time if I tell them I've got leg pain
• someone people have to live with a general tendency to clots, and at least mine is just pregnancy-related so only for 9 months

Of course on bad days I verge between being convinced I've got another one / being really angry that this happened to me and I have to put up with leg pain for the rest of my life / being really angry that the doctors didn't find it straight away last time!

Sorry - don't know if this is helpful. I would say I'm no longer "terrified" of having more children but still "scared". I'm trying to get as much info as possible about proceedures etc before deciding - have now been told that I have to go for another type of scan so they can see what's in my leg now and "assess the risk". Think there's a long wait for those though, which puts off the decision for a bit and leaves me half-relieved, half-annoyed, and convinced DD will be at secondary school before they've finished all the tests!

Hi bramshot see what u mean about uncanny nice to know its not just me that freaks. I was so angry that i was in hosp and i got one that bad coz no one checked my legs coz i was past the fortnight checking.Didnt know about scan to check legs, all i was told was that if i was pregnant again i would be heparinized at 4 months.

Sorry Bramshott, I didn't see your post as we have been without a computer for a few weeks. No, i haven't had to wait in casualty for hours to be checked. I go into the haemophilia department at the hosptial to get the clexane, and I have just mentioned any pains to them. They send me straight to the vascular studies (or something) department who scan the veins straight away.

Like the rest of you, it was an enormous shock getting the first blood clot and my symptoms were ignored for weeks before it was diagnosed (my leg went blue, so it was pretty difficult to ignore by then). I'm not quite so blase now (35 weeks pg), had a horrible appointment with the consultant who has taken me off midwife care for the rest of the pregnancy and very kindly told me about the risk of getting a pulmonary embolism (apparently higher risk than in my first pregnancy). Have had 2 pregnancies with no recurrence of the dvt, and am desperately hoping that this one will be ok too.

hi there,
can't believe the wait in diagnosis for so many is it just me or should healthcare professionals not pick up on the fact that women are exposed to DVT in these circumstances and query any leg pain ASAP. Was wondering why Doc would say P.E was more likely 2nd time round. Surely P.E is caused by DVT and if they are aware of the danger and you are heparinized and wear sockings ect, in theory you shouldnt get one so how could u possibly throw a clot if there isn't one there in the first place?

Doctors are very keen on throwaway comments aren't they! I remember one who said to me "I can't promise you you won't have a pulmonary embolism" and then told me to go home and not worry! As you say flic23, you wouldn't think we would all have had such trouble being diagnosed as DVT is a known complication of pregnancy/birth! And 10 days of midwife checks is not long when a clot would often not present itself until the week after birth (I think the highest risk period is the 6 weeks after). To clarify - I've had new scans recently because my haematologist referred me to a vascular surgeon, and she sent me for a vascular ultrasound, then referred me for an MRI scan as than one was inconclusive. I think they're looking to see if there is some obstruction in the pelvic/tummy area (my clot was in the femoral vein) which caused the clot in the first place.

Thanks Polyanna for explaining how you're checked for leg pain. I think I'd probably be happier if I knew more about the process for the heparin etc. Good luck with this baby - sure you'll be fine! I've never been able to get a straight answer out of anyone re level of risk - i.e. does the damage in the vein from a past clot mean another one is more likely, or does the heparin sort this out?

I do feel quite strongly that more advice / support is needed in this area. All you get is a little paragraph in the pregnancy books which says "this happens to very few people, but can be fatal" - and in fact it seems to me that it's quite common. When I was diagnosed there was a lot of panic around, when what I felt I needed was calm explanation and advice (all the advice I had was different). And it would have been great to be able to talk to someone else who'd been through it too. I've written to the NCT about this in the hope they'll feature it in their magazine at some point. Have also thought about starting a local support service for people who are going through the problem at the moment (via community midwives probably), but haven't got far with that. Anyone else got any thoughts?

Think that's quite enough from me! Clearly don't have enough work to do!

I completely agree wih the lack of information on the condition available. I simply read that my legs would be checked. I only knew about it through my training as a radiographer as i had spent time in ultrasound assisting on leg scans. Perhaps i would not have been so lucky if i had put it down to a pulled muscle?
Surely the information should be included in all the NHS pamphlets and books we recieve. They tell you plenty about pre-eclampsia and placenta previa so why not DVT!!
Also as I know Bramshott had the same circumstances as me Does anyone feel that if u have to remain in hospital after birth for whatever reason for more than 48 hours then they should routinely be put on low does heparin as a precaution. I saw women in Pre-natal ward at the same time as i was being put on warfarin so why wasnt i offered it in post-natal.
A query on different area i live in the scottish highlands the nearist consultant led unit being 100 miles away. I was breast feeding and initally told i would have to stop because of warfarin, thankfully a midwife queried this at last minute and it was deemed safe. Therefore my DS had to come with me.I was treated like a leper by medical staff as they would not find anywhere for us. They wouldnt let us go to maternity ward as there was no medical cover even though the medical ward was litterally through the door.I had to be transfared miles from home alone as it was to late for any one to follow.Safely the worst night of my life as i had no support as i was so far from home. Just wondering if anyone experienced the same sort of thing

Sorry womenin pre-natal were being put on heparin while i was being put on to warfarin bit of a mouthful got it wrong way round

I am very lucky as I am near a very large London teaching hospital who seem to know their stuff. The haemophilia team, who deal with the heparin etc, have told me that I have a slightly higher risk of getting a dvt during this pregnancy than normal women, but it is not drastically higher. I haven't checked with them about the risk of getting a PE this time, but I expect they would say that the obstetrics doctor has exaggerated (well I hope they say that). If I have a really high risk of a PE, the haemophilia dept seem very relaxed about it. I won't relax until after the pregnancy is over though.

I agree that education about the risks of a dvt is very poor, especially as (I think), a dvt is the biggest cause of dying in pregnancy/childbirth.

My midwife told me that too - that PE from a DVT causes the highest number of maternal deaths each year so you'd think there would be more publicity. I guess the largest risk is if you're not aware of it as a risk factor and explain away your early symptoms.

My local hospital were fairly good at treating me, and only 15 miles away, but I had lots of problems with no-one wanting to take responsibility. I was having my post-natal checks at the hospital, rather than at home, because my daughter was still in SCBU, but they didn't want to take responsibility once I started having problems, and told me to got to my GP - particularly as the problems started around a week to 10 days after the birth. Two or three weeks, rather than 10 days of post-natal checks would have made a big difference to me, as I guess then they would have been under more pressure to check and treat me on the ward, rather than thinking I wasn't their problem any more and telling me I couldn't see a doctor there without being referred by my GP.

Personally, I think that post-natal checks for longer would make more of a difference than routinely offering heparin, as I guess there are other problems with that and it can lead to post-partum haemorrhage in people whose blood is not over-thick.

I was also told initially by three doctors that I couldn't breastfeed on warfarin (this whilst my daughter was in an incubator and I hadn't yet had a chance to feed her), but then someone overruled them and said it was fine. I remember being concerned that if I had any problems past 28 days then I wouldn't be able to take my daughter back into hospital with me though. It sounds as though you had a very bad experience flic23.

It wasn'tgreat bramshhot but saying that some folks were really good to me,particulary the midwife who knew about the new research on warfarin. It binds to proteins and as breast milks main agent is fat the amount that passes into the milk is negligable.(Kinda thought the docs should have known this) it was his feeding that kept him in SCBU wasn't about to start all over again, also wanted to BF due to pre-term.
I personally feel that in this day and age when BF is pushed so heavily by the medical profession thay should be able to take measures to accomodate nursing mothers under such circumstances.

Didn't realise P>E was the largest killer in pregnancy that makes it more unbelievable that education is so poor why is such as serious issue being overlooked!

Haven't suffered from DVT but did have unexplained chest pain when 5 months pregnant a year ago - had chest x-ray (bump covered with a lead apron), was put on low-dose heparin as a precaution and then had something called a VQ scan (?) where they inject you with radioactive dye so that they see the blood circulating. Had a half dose of the dye because of being pregnant but still feel a bit weird about the radioactivity - is it possible it could affect dd in the long-term? Does anyone know? (by the way, they didn't detect a PE and the chest pain went away in the end).

hi yulettsdaughter,

don,t take this as gospal but i trained as a radiographer and the law regarding radiation is very tight the examination has to be completely jusified ie the bnefits of having the scan would have to outway any risks. The radiation levels are very low. I myself had a VQ scan about 5 weeks after DS born as a i had some pain. I had to express all milk for 24 hrs but then it was fine as the isotopes used have a very short half life. So i figure the levels in me when i started feeding would have been what you had to start with and that was ok.
Finally from what i remember from my training radiation exposure to unborn babies can affect the main organs. Given that the major development is over by three months particularly of the brain it is deemed safe from the second trimester

Thanks for taking the time to reply to me, flic23. They did say at the time that it was more important to rule out a PE than to not do the scan but since I didn't have a PE in the end, I have worried a bit about whether there might be consequences of the scan. What you said about the trimesters is somewhat reassuring.
Sounds like you had a scary experience, being transferred all those miles away. Glad you had a m/w on your side though.

hi yulettsdaughter

like i said dont take it as gospel(its a few years since i trained) if ur still worried i would check with ur G.P, i'm sure they would know for sure. Your right my experience was bad but its sorted and i have a lovely DS he is an angelic baby think it must be karma!I would have missed BF so much so thankgoodness someone spoke up at he 11th hour. Haveing query PE isn't nice either though and the added worry about baby can't help hope ur even a bit reasurred glad to help

Well dd is 7 months now and has had no health problems - I'm probably worrying over nothing.