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any one else had a blood clot?

(30 Posts)
Mommof2 Thu 24-Jan-13 18:59:22

Last August I got rushed to hospital and found I had a considerable sized clot on my lung, I had no reason really what made me more likey to get one.

I am now on warfarin and only 29, just wondering if anyone else has had anything similar and if they are still on medication and how long ?

digerd Thu 24-Jan-13 19:11:42

Hope somebody who has had one soon contacts you.
I have known people who had a blood clot elsewhere, but not in the lung, and some who have been on Warfarin for years - usually the elderly.
One man had one in his thigh and was in hospital for 2 weeks on a blood thinning drip into his big toe. He was monitored for some time to get his blood back to normal, as was too thin and had to be careful he did not bleed by scratching , cuts etc.
Did they do anything else than give you warfarin? And was the clot in the lung or the pulmonary artery?

mypussyiscalledCaramel Thu 24-Jan-13 19:36:50

I had a blood clot in my groin when I was pregnant with DS1, I was 25. I now have to inject heparin everyday if I get pregnant again, just in case.

I was lucky that it was pregnancy related, but even then there was no support or information out there.

blissa Thu 24-Jan-13 20:11:57

I had bilateral clots 4 years ago when I was 27. Wore compression stockings and took warfarin for 6 months before having blood tests to determine the cause. I was found to have a variant gene that makes me more prone to clotting. I'd had 3 pregnancies with no problems.

I can no longer take the contraceptive pill and I will need anticoagulants for any further pregnancies (not happening!) or for surgery.

It is a really scary thing to go through, especially when there is no obvious cause. I did go through a stage of extreme anxiety and panic attacks but I have over come it and live my life pretty much as I did before my PEs.

3littlefrogs Thu 24-Jan-13 20:19:13

Was your PE related to surgery or illness, or did it just happen?

Depending on the probable cause, or lack of one, you should have had some investigations at the time, then a fixed period of treatment - either 3 or 6 months depending on the cause.

Then, when your treatment ends, you should have further screening by a haematologist to determine what should happen in the future, inparticular to discuss whether you are at risk of further clots.

Is there a family history of DVT/PE?

Sorry to hear you had this, it is a horrible, scary experience.

Mommof2 Thu 24-Jan-13 20:21:27

Thank you all, it was a pulmonary embolism digerd (can't spell) but they called it a PE for short.

The nurses did tell me that it normally occurs in older people, I am scared to be honest to come off the warafrin. I have an appointment soon for further tests. I am also under a lung specialist as a part of my lung died when I had the clot.

Can I ask did any of you gain weight after being on the warafrin?

3littlefrogs Thu 24-Jan-13 20:23:25

Can I just say there is loads of information and support out there:

"Lifeblood" is a charity devoted to the prevention of blood clots - just google it.

Anticoagulation Europe is an organisation for patients and health professionals. Again, just google it - the web site is packed with information, there are regional patient representatives, a regular magazine, a patient forum and support group etc etc.

Mommof2 Thu 24-Jan-13 20:24:32

Thank you 3littlefrogs and no the PE wasn't related to anything. It just happened and it was scary as it was out of the blue. They put me on the warafrin for 6 months and then I do have to go back for further testing.

I am scared to come off it as before I would never of thought I had a blood clot so when I do come off I will be paranoid over every cough, I just no it.

3littlefrogs Thu 24-Jan-13 20:30:19

That is exactly the right treatment. You will be referred to a haematologist and have lots of tests and a very careful history taken.

Do try and find out if there is any family history, in particular any sudden deaths related to childbirth/pregnancy in the past.

pm me if you like.

Mommof2 Thu 24-Jan-13 20:38:31

No there isn't any history, well not that I have known about or my mom or dad knew of. That is the scary part, you always think why me? But I do hope they do the right thing and don't take me off the medication unless they are sure.

3littlefrogs Thu 24-Jan-13 20:50:02

You can't have the genetic screening until you are off the warfarin, so you will have to stop for several weeks while that is done. Then they will decide how best to proceed.

blissa Thu 24-Jan-13 20:52:53

From what I remember they can't do the tests whilst you are on warfarin. I know how you are feeling, I was terrified when I came off, I kept imagining my blood thickening up. But it was ok, and if the tests show anything up they will put you on the right treatment.

Happy for you to pm me too if you want
Xx

digerd Thu 24-Jan-13 21:02:55

How terrible for you, they can be fatal. The only thing I have read about them is that they are normally a blood clot in the leg that travels up and blocks the pulmonary artery and yes Embolism it how it is spelt. What were your symptoms?

Mommof2 Thu 24-Jan-13 21:05:12

Thank you both, yes I remember them telling me about the tests but I have to come off the warafrin first, they said they dont want to keep me on it for a long period because of my age, and the bleeding side of it. My levels go from one extreme to the other though, one week I was 4.0 and I am meant to be in the range of 2-3 xx

Mommof2 Thu 24-Jan-13 21:07:02

My symptoms were just at first like having a chest infection, then bit by bit my breathing became harder and harder until one day I couldn't even walk down the stairs without gasping for breath. It was scary, and at the time I was on my own with my 2 children.

blissa Thu 24-Jan-13 21:18:00

My levels started to fluctuate after I had been on it a few months, my dr said that can happen, can't remember why. I think I convinced myself the rat poison had stopped working blush

I know it's easier said than done but try and keep calm and positive. Make yourself get out of the house everyday, even if it's just for half an hours walk. Something like this can really knock your confidence and the fear that something may happen can be debilitating.

digerd Thu 24-Jan-13 21:19:26

You are actually very lucky that you had these warning signs, as many don't and is fatal.
You are very young to have had this. But I know of a man of 28 who had a blood clot in his brain which gave him a stroke, but he did survive and was fine.
Blood clots are very frightening and serious, and usually it is not known what causes them.
My brother did not have a blood clot but blocked arteries in his groins caused by some protein. He was told to take 300mg of Asperin daily, which he has been doing for12 years to keep his blood from thickening.

zipzap Thu 24-Jan-13 21:27:59

I had one in my leg (DVT) a couple of weeks after I gave birth so it was related to my pregnancy. I had warfarin for about 9 months in total - they really struggled to get my INR under control so I ended up having it for longer than I was originally told.

I think there were also a couple of dippy doctors or people working out the doses because there were days when I'd dropped significantly below what it was supposed to be and they were telling me to take very small quantities of warfarin (luckily I'd been put back on to heparin injections again but that's kind of missing the point!) and then they would be surprised it had fallen even further.

I got the tests done and it seems I don't have an underlying genetic condition, I was just unlucky and got it as a side effect of pregnancy. If I ever got pg again, I would need to inject heparin. I'd love another dc but this has put me off (especially as I'm now 43, I was 39 when it happened, i was hoping I'd get a bit more courage up after a year or so but it just never happened sad ). I also discovered near the end of my course of warfarin that if you have been pg your body reacts differently to warfarin and needs a different protocol to the normal one - again my gp and the hospital doctors hadn't heard of this, the gp was at least interested and thought it was relevant and found out more info, the hospital team were not at all interested as they thought they knew better (despite screwing up my treatment and my condition exactly mirroring the conditions described in the research).

I found I put on loads of weight whilst on warfarin - and have continued to do so ever since. I was breastfeeding (lots - a hungry baby!) and by the time I started the warfarin a couple of weeks after giving birth, I'd lost all but a couple of kilos of my baby weight, which I was really chuffed by as my weight had crept up a couple of stone after ds1 and then more whilst I was pg. (I'd only lost the ds2 baby weight but was hopeful that more would follow). But I put on weight really quickly - I've read some stuff that is anecdotal where people say that they have had weight problems with it but it doesn't seem to be an acknowledged side effect.

Conversely, ds2 is now 4 and very tiny for his age. I still wonder if this is because I was taking warfarin despite them saying that it was fine to take when breastfeeding... There's just that niggling thing in the back of my head that makes me wonder.

It was really scary - and made all the more so by the lack of information around (doubly so by the lack of information relating to dvts in relation to pregnancy despite them being one of the leading causes of maternal deaths these days).

digerd Thu 24-Jan-13 21:43:05

I don't know what medication my neighbour had for 2 weeks in ICU. But saw him some time after with a plaster on his ear lobe. He told me it was the blood testing to see how his blood was returning to normal as was so thin was dangerous. He was elderly though, and had a swelling in his thigh that was too big to travel anywhere, when diagnosed. Cause unknown, just some people get it.
We were told never to cross our legs or ankles as can cause Thrombosis < blood clot>. Also lying flat in bed for long periods can cause it too.

Mommof2 Fri 25-Jan-13 09:55:28

Zipzap I am exactly the same, the levels have been up and down and mostly a result of the doctors. Because same here when my levels dropped they never increased my warafrin. It can get very fustrating. I also suffer with endometriosis and my GP recently prescribed me with the pill, when I read the leaflet it said not to take if you have had a blood clot. I told the docotor and it was like she wasn't happy I challenged her.

I also seem to have put weight on very quick, I no I haven't been able to do as much exercise but still this isn't like me. I am also finding it hard to loose it. I think it is scary that it just happened really, they did ask me the questions like have I been abroad, or been ill where I have been in bed for a while, does it run in the family ect. But it was a no to all of them. The only thing I can pin point it to is the pill I was on.

And digerd I have been told not to cross my legs but it is hard to stop these habits now, but yes it can be very dangerouse when the blood gets too thin. I worry about falling over and all sorts.

Themobstersknife Fri 25-Jan-13 10:18:25

So sorry to hear you are going through this OP. I also had a PE following the birth of DD2. I had a section under GA, I spent loads of time sitting around breastfeeding and I have a rare condition which makes clotting more likely. So lots of risk factors. On the other hand, I was taking clexane at the time, so the fact that I still had a PE is quite frightening and as a result, I am on warfarin for life. I am older than you - in my early forties - and I really struggled with anxiety and depression in the early days. I am about 9 months down the line now, and coming to terms with what happened, but had a period where my INR was lower than the range, and all the anxiety came flooding back. We knew I was at risk of clotting, but it still came as a huge shock, so I can imagine how shocked you must be without any risk factors. Interestingly, I had problems with my lungs years ago after taking the morning after pill. It was never diagnosed as a PE but I was very poorly and told to never take the pill, so I now wonder if that was something similar.
I also have struggled with my weight, although if I am being honest, I have been comfort eating so it is no surprise. I also find that I crave chocolate which i have never done before. I am now slowing getting myself sorted, and starting to cut down and have lost a few pounds.
I hope your testing goes well, and they work out the most suitable treatment for you that allows you to relax and enjoy your life. The fact that you have come through the PE and have got through the period where recurrence is most common is very good news. You are in a less frightening place now than before your clot in reality, as now the medics know you are at risk and can monitor you and put plans in place for prevention.
Sorry to hear from the other posters who have also had clots but good to hear you are getting on with their lives and feeling more relaxed about it.

digerd Fri 25-Jan-13 13:45:30

I too cannot get out of crossing my legs, as is more comfy on the tummy muscles. But I developed a dent in my calf musles as I got older as I favoured the same leg over, so try to remember to keep changing the crossed leg.
The crossed ankles danger was while we were all bed-ridden < in the olden days> after birth for the first 3 days in hospital and stayed in a further week. It is dangerous when you are lying prostrate, as in/on a bed to cross your ankles, and the nurses would slap them if they found us doing it. The good old days!
I am lucky as have had only 2 harmless surface vein Thrombosis, one on my outer shin after losing my balance and knocking it on a bucket rim, and the other from an anaesthetic in back of hand which caused several very painful clots in that wrist.
I was on the pill for 13 years and now 18 on HRT. I do worry about blood clots
.So sorry you have been through all this at such a young age.

Mommof2 Fri 25-Jan-13 17:57:55

Sorry to hear about you too Thembo, it is a scary thing to go through isn't it. There are things though that are so similar though, I have never been a chocolate lover but feel like I could eat it for England. I do stop myself but it is so easy. Good luck to you loosing weight though, it is so hard. I am trying myself but it isn't going to plan at the moment. I am just waiting for these tests though because either way I think I will be scared. If they keep me on the warafrin I will think well I am a bit young to be constantly on it but on the other hand I dread coming off in case I get another!

But no point worry about it now, just a case of trying to get on with it now and see what happens.

Digerd when I was in the hospital with my clot the nurse hit my legs because I had them crossed, I felt like a naughty school girl! But I understand why they do say it.But thank you, I can't believe it either really but I was grateful they found it when they did. Dr said If I had been older I would never have got on how I did. Very scary!

digerd Sat 26-Jan-13 09:13:08

OP
How was your PE diagnosed as your symptoms are similar to a clot in any of the coronary arteries. Was it with a contrast dye injection and a PET scan?
Glad you can " count your blessings" that it was found in time, and that you are receiving treatment to prevent it recurring. But still scary for you.
My nephew IL had a mild stroke - which is normally caused by a blood clot> at 40, but he also was relieved his problem was caught early and is receiving treatment for his condition now.

Mommof2 Sun 27-Jan-13 20:10:00

Yeah it was diagnosed, they gave me a x ray and a scan and they did have to inject me but I can't remember a lot as by the time I was taken in I was not really with it as my oxygen levels were low and I was put on oxygen.

I am glad though it was found even though now I am a little angry that I seen 2 doctors before and one of them doctors I seen twice. So I do think they could have done more checks.

Bottleoffish Mon 28-Jan-13 00:00:44

Hi OP. I had bilateral PE's in one of my pregnancies. I was put on heparin for 6 months as you can't take warfarin when pregnant and have had to have aspirin and heparin in a subsequent pregnancy. I have been diagnosed with Hughes Syndrome and although I am trying to concieve so on low dose aspirin at the moment and will go back on heparin during pregnancy, after that I'll be going on warfarin for the rest of my life. I'm only 36.

My symptoms were severe shortness of breath, which, as I like to brush things off, I put down to pregnancy! It was only as the midwife suggested I get checked out I begrudgingly went. At the time I was at very high risk of an infection that would mean delivery of my twins and I was only 21 weeks, so I was just relieved it wasn't that!

digerd Mon 28-Jan-13 07:25:36

Blood clots are very dangerous and very difficult for a GP to diagnose, unless , like 2 men I know, they had painful swellings in their legs.
My dad died of one in his coronary arteries - didn't show up in an ECG- and he had chest pain and breathlessness and weakness in his legs, for months beforehand. He was 75 though and in 1984 it was the average age of men's life expectancy and the hospital did nothing.
Last year my 83 year-old neighbour, had a mild stroke, and her carotid artery was cleaned out and she was given a heart by-pass on one of her coronary arteries - despite having no symptoms with her heart they checked it as well as part of today's MOT for the elderly.
Young people are not bothered with as not expected to have blood clots/furred up arteries. But obviously some do.
Good luck OP.

Mommof2 Wed 30-Jan-13 18:21:34

Sorry to hear that bottlefish that is a young age to be put on warfarin for life, I was considering having another baby with my new partner, not now but in the future but I am scared now that it will be too dangerous. But I am going to hospital Friday so I will find out more details, and whether I can come off the warfarin.

Also sorry to hear about your to hear about your dad digerd, it is more common in the elderly but still doesnt make it any better, I go and see some people in the clinic. They are all older than me, but it is a shame as one lady said she had been on it for 20 odd years. It is a scary thought really. Dreading the out come sad

Bosgrove Thu 31-Jan-13 21:39:44

I have had two DVT's, one in each leg, so high up in the leg veins that they had stretched up to my stomach.

I was 28 when I got my first, I was put on the usually clexane and warfarin, until my blood levels stablised, then just the warfarin for 6 months.

When I finished the six months I was weaned off the warfarin and tested via a thrombophilia screen, I turned out to have protein S deficiency (PSD)

I wasn't told how the PSD would effect my life, but was told that if I ever had a second clot I would be on warfarin for life. I got home and scared myself silly reading the internet.

A year later I had my second clot, so now on warfain unless pregnant in which case I self inject clexane (it is a lot less painful if you do it yourself)

I have three beautiful children, all of which were conceived while I was on warfarin, and I had two trouble free pregancies. The first was a bit harder as I have to be on a lower dose of clexane than usual or I bleed a lot, it took until week 13 to realise that I wasn't losing him and to get the dose right for me, and I went straight back onto warfarin straight after the birth and had a secondary PPH a week after DS was born. We learnt from the first pregnancy and the following two were straight forward.

If I had listened to the locum GP who when ask what should I do if I get pregnant while I was on warfarin (have an abortion was her answer) instead of my lovely haemotologist (phone and we will see you straight away, was his) I probably would have been to scared to try for a family.

I am now 40, and have been on anticogoagulants for over 10 years, if doesn't really effect my life. Ok I probably won't fly to Australia, but I have the family I also dreamt of.

Bosgrove Thu 31-Jan-13 21:51:45

Just seen you question about family history and weight gain.

Family history, PSD is either inherited or acquired, I didn't inherit from my Mum (she has been tested) but my Dad is scared of needles and knowing where it came from does effect me. My children have a 50 /50 chance of having it or not.

Weight gain - I have both put on weight and lost it while on warfarin. I alway put the weight gain down up the number of Burger Kings and cream cakes I ate, and the weight loss is down to slimming world and eating a healthy diet.

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