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Diagnosed with DVT, not really told what to expect

Posted , 5 users are following.

youngatheart1
youngatheart1

Hi all, was diagnosed with a DVT 4 weeks ago, behind knee and halfway up thigh.  On Apixaban which is not troubling me apart from being cold all the time and the fact I am scared of cutting myself as there is no antidote, or so GP said.  On blood thinners for 3 months only, which is great and the lumps are going slowly, although still really sore to touch.  What happens now, am I going to be susceptible to more or can you just have one and never have a another one, how long before the worry of having a PE goes, also no idea what caused it apart from started HRT 11 months ago so told to come off that, but cancer was mentioned, which to my knowledge I do not have anyone, but obviously I did panic at the mention of that.  To be honest it may sound weird but the blood thinners seem to be making my legs feel lighter, the varicose veins in calf have definitely gone down and my skin is not so red around ankle, I had a horse fly bite in the leg about 3 years ago and got bad cellulitis and the skin is still quite red looking.  I just feel a bit nervous about it happening again and any little pain in calf sets me on edge.  GP's in UK do not have time to answer all the numerous questions.  Anyone gone on a long flight after a DVT? we were hoping to go to USA later in year, I know insurance will be higher, but that is one of those things I suppose.  Thanks

1 like, 23 replies

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  • Vivi3nne
    Vivi3nne youngatheart1

    Posted

    I had a DVT from back of knee, up my thigh and across my abdomen.  At the moment, you need to rest the leg, no standing for long periods, sitting you should have it raised.  Walking is good, just do what you are comfortable with.  Three months is the minimum for anti coagulant after a clot, you should see the specialist then and be reasessed.  You should wear a compression stocking for 2 years. They did not know what caused mine. I had CT scans looking for cancer, did you have any?  I was on Warfarin for 12 months and now Apixaban for the rest of my life.  I took a 10 hour flight six months after having the DVT, they said it was fine as I was on the Warfarin, just to move about a lot in the aircraft and drink plenty, normal advice for a long haul flight.  I use the free European travel insurance that comes with my bank upgrading it to worldwide other than the States and Canada and it cost me £100 extra after having the DVT, before it was just £10 for the upgrade.  If you did not have a PE it does not affect the insurance too badly but it would be much more for you going to the States. 

    • youngatheart1
      youngatheart1 Vivi3nne

      Posted

      Hi thanks for your prompt reply, I am lucky just to have it half way up leg, it must have been so painful in stomach.  I have been told to take apixaban for 3 moths and then stop, which is a worry in itself as you are not meant too, but I will speak to GP before I stop and see what they recommend. Does the length of time you are on it depend on the blood tests, how do they decide if you need it longer?  I have not been given a referral back to hospital, but am getting a blood test done in a couple of weeks and will ask more questions then.  The thought of being on tablets for life is not a good one as I am so scared of cutting myself and I have arthritis so need ibuprofen which I cannot take.  Glad to hear your flight was ok, I will invest in some compression stockings before we go and also make sure it is ok to do fly.  With regard to scans, I have just in the last 3 months had a breast scan, and a smear which all came back clear and a scan which looked at stomach, liver, spleen and kidneys so they did not order any.  I started HRT 10 months ago and they seem to think it is that, but I have lost 4lbs since stopping HRT and your mind automatically thinks oh no cancer.  I did not have a PE and hopefully at 4 weeks am now past the danger stage.  I expect the insurance will be a lot higher but we will just have to take it on the chin I suppose, that was my husbands first comment about the extra cost, not how are you LOL Take care
    • Vivi3nne
      Vivi3nne youngatheart1

      Posted

      I am not worried about taking Apixaban, i was more worried about getting another clot. There is no antidote for it but it does not stay long in your system like Warfarin does.    My GP said I keep taking the Warfarin until I saw the consultant and it was up to him, the consultant changed me to Apixaban.  The appointment just came from the hospital I was in for 2 weeks with the clot.   You should be wearing the compression stockings now, you should get them on prescription (they are very expensive, the ones I have now are nearly £90 a pair), you need to visit your  nurse to be measured up for them.  You should also carry a card or wear a medical bracelet to say you are on apixban (I got a bracelet from ebay).  If i were you, I would go to your GP to discuss your worries, it does not seem right you have just been left like this.

    • youngatheart1
      youngatheart1 Vivi3nne

      Posted

      Hi, you are right rather take a tablet than get a PE.  I was lucky compared to you as I just had to go back for a couple of days and have an injection in stomach, I did not stay in hospital so perhaps mine was not a major one, it felt like it as there were several lumps.  I have been rather left to get on with it and had no instructions so have made an appointment to talk about what happens next.  I did get a copy of the report today and it just says tablets for 3 months so hopefully that will be the end of it, I do have a card that I carry with me stating I am on it, good to know that it does not stay in system for ever.  Take care
  • Hankat
    Hankat youngatheart1

    Posted

    Hi youngheart sorry to hear about your dvt, scary stuff eh. You won't get another clot while tour on blood thinners & even once your off if they think its the hrt you should be fine, of course there's no guarantees but is there with anything in life.

    Go to your doctor & ask for stocking you should be fitted for them & wear them daily. I was told to exercise as much as I could as it can only help your leg.

    I'm 5 Months out from my dvt which was quite extensive & I've finally come to terms with it & I'm not nearly as paranoid as I was, I used to measure my leg quite often with any little ache but that lessens with time. It's such a shock & a scary thing to happen.

    If you go on the thrombosis Uk website there's loads of Information on there. As for cutting yourself if you do I'm sure there's a way to stop it. I was on warfarin but it wasn't working for me so I changed to rivaroxaban & I was so anxious at first but now I don't worry anymore.

    Good luck & it does get easier.

    • youngatheart1
      youngatheart1 Hankat

      Posted

      Hi Hankat, yes sure is scary. Glad to hear you are getting better. I am just panicking I think but had appointment with GP today and asked her lots of questions, she said the same as you while on blood thinners it would be extremely unlikely to get another one.  My oxygen levels in blood were excellent so apparently that means no clots anywhere.  I just wish I was 100% sure it was HRT, when they said at A&E it could be cancer before I said I was on HRT your mind goes into overdrive and the fact that I have lost 6lbs in a month over christmas since coming off HRT is even more scary, people talk about putting weight on with HRT but no one seems to know what happens you come off. Logic tells you that you would lose weight even if it is just fluid, but will have to wait for a few weeks and see if it settles down before I am 100% convinced.  Sadly health anxiety is a bit problem for me.  I will look at website and try to calm down a bit.  Thanks again take care 

    • laura74991
      laura74991 Hankat

      Posted

      How long did it take your leg to get back to normal size? how much exercise and how long after the DVT? Mine is 5 weeks old. I'm on xarelto

    • Hankat
      Hankat laura74991

      Posted

      Hi Laura, my leg went back to its normal size after about 2 weeks but it did continue to ache & change colour

      Up until til about 6 weeks out it still aches sometimes now but not too bad. I exercised pretty much straight away i was

      Told & also read that the more you exercise the better for the leg in preventing

      Or slowing down pts. I walked at first then started back running after 9 weeks.

      My clot was completely dissolved with thrombolysis though so each person is different.

      Good luck & keep that leg moving smile

  • grace42110
    grace42110 youngatheart1

    Posted

    I took a DVT at start of Dec 2016 from groin to ankle which then unfortunately went to both lungs. Injected for 10 days on clexane before starting on Apixaban. Agree Apixaban makes you feel cold. I too was checked for cancer (nothing showed), think it is to do with the d dimer reading and age. Apixaban at the moment does not have an antidote but also leaves the system very quickly. Bleeding from a normal cut should stop within 10 minutes - like you I was very scared at the start but know are getting my head around everything.  Waiting to see haematoligist but have been told by DVT nurse that chances are I will be a lifer on medication. I had my first clot at 17 following a car accident and surgery (no internet then and treatment very different, but you just got on with life) and now 46 years later for no reason it is back in same leg. Do wear your compression stockings for at least 2 years, they are available on the NHS and you will be measured to get correct size. I was meant to be on a flight to Cuba 2 days after it happened but obviously did not take that trip but have been told it is Ok for me to do a 5 hour flight at end of Feb. I have not contacted my insurance company (have annual insurance) yet but I am sure the price will be high. Had told them about my previous DVT which had already put the policy up slightly.  It is hard not to be anxious at every little pain but try to remain positive - Remember we can still see the daisies and are not pushing them up. Hope things continue to go well for you.
    • youngatheart1
      youngatheart1 grace42110

      Posted

      HI Grace, we must have had them together, mine was diagnosed on 11th December but had it for a week before as GP said it was cellulitis.  Am getting used to taking tablets, have not cut myself yet so no problems with that.  Funny you mention about a clot previously in same leg, I had a plebitis in the calf of the same leg many years ago, so perhaps just bad veins.  Glad no cancer found for you, I wish they had checked me, what tests did you have?  Hospital assumed it was HRT as I had started the 10 months earlier.  I have had the usual age related breast screening and cervical smear in past 6 months and also scan of stomach, spleen, liver etc due to overload of iron, so perhaps that it enough proof that it is not cancer related. Just the word worries me.  I am only 57 with an 18 year old son who I want to see through Uni etc, so am keeping myself positive.  I have been told I will be off axipiban in another month, only need to take for 3 months, my concern now is that leaflets all say do not stop cold turkey, but GP said if hospital said to stop after 3 months, then do it.  I will be checking before I do though.  Take care
    • grace42110
      grace42110 youngatheart1

      Posted

      Hi Yes I took mine on the 1st Dec. Swelling in calf and sent to hospital for all the normal tests. Had VQ scan the day after which showed it had broken off and gone to both lungs. Signed off by DVT nurse last week and now waiting to see heamatologist. Was tested on day 1 for  cancer due to d dimer being so high plus loads of other tests to check iron etc., but like you had usual age related screening cerivival and breast screening recently. I have no spleen due to losing it in car accident (surgery resulted in my first clot). Still taking apixiban (injected for 10  days to start with clexane) and nurse thought it could be possible it would be for life. What leafets did you get?  Treatment for everyone seems to be so different but with little guidance on anything e.g. recovery time, exercise etc. Do let me know how you progress and good luck for the future.
    • youngatheart1
      youngatheart1 grace42110

      Posted

      Hi, I went via A&E ambulatory care, so have had no tests or follow ups, or referrals or anything, I feel really a bit left in the dark. I am in the UK and too be honest was in A&E for 9 hours and just pushed out the door and told to come back for scan the next day which I did, this confirmed DVT and was given heperin in stomach and told to come back next day, which I did was given another injection and prescription for apixiban and told I would need to take it for 3 months.  All the leaflets say not to come off it, but I have no follow up booked or anything.  Luckily mine did not go to lungs so maybe not so serious.  What is d dimer as I have not heard of that?  I have made an appointment to speak to one of our older GP's so hopefully will get some more info then and ask for tests. my iron is actually high and GP flag it up then irgnore it so not sure if that is related.  Stupidly been googling today and found an NHS article from 2012 which said that all DVT's which appear for no reason should be looked into as 1 in 10 will be being caused by an unknown cancer.  I wish I had done the ironing instead.Take care

    • grace42110
      grace42110 youngatheart1

      Posted

      D dimer is a blood test taken when first at hospital to ascertain if blood clot is present. I had further blood tests taken the next day by the specialist DVT nurse who I was assigned to for 6 weeks. One of the blood tests was to check for cancer. 9 weeks on, I am still on Eliquis and will be until I have seen the hematalogoist, hopefully within the next few weeks. He will then decide how long to keep me on it.  Not sure what happens then - everyone seems to get treated very differently depending where you live. I am in Northern Ireland and cannot fault my care so far. It is just trying to get information that is so hard and like you I google alot and have joined a few support groups via facebook.
    • laura74991
      laura74991 youngatheart1

      Posted

      I got diagnosed on Feb 2nd.  I was told I'm going to be on Xarelto for 6 months.  The doc told me I would keep the compression stockings for 3 months. I'm reading here for 2 years.  My leg and tummy are super swollen still. 

    • laura74991
      laura74991 grace42110

      Posted

      I could not find any support groups on facebook. Can you please send me names?

      are your legs back to normal size?

    • grace42110
      grace42110 laura74991

      Posted

      Hi Laura I managed to find a few support groups by searching the internet and then signing up through facebook (they are all closed groups but easy to join). Anticoagulant Support Group UK., Pulmonary embolism & DVT Awareness, Xarelto/Eliquis Club., Blood Clot Recovery net., Thrombosis Support., DVT/PE/PTS/RVT   - I found one group tends to lead to another.  My leg with the DVT is still slightly swollen but it is the 2nd clot in the same leg. The first was when I was 17 and then again at 64 which also went to both lungs.  4 months in I am doing well and back at the gym and Zumba. The only way my life is changing will be that I am now no longer able to scuba dive due to being on Eliquis (anticoagulant) for life.

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