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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

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  • youngatheart1
    youngatheart1

    Posted

    Hi all, well that was a worrying appoinment.  After asking and asking my GP if it was ok to just stop apixiban, even though every article say's not too, both times the answer was yes.  Being anxious I still did not accept that and thank god I didn't.  I rang up hospital to ask to speak to them about my treatment or should I say lack of it and was asked to go back in to have a scan, that was last Thursday.  The consultant was ranting that my GP should have organised more scans and sent me to see blood doctors, he said that there is a process to follow once you have been diagnosed with DVT and my GP's have not done this.  I was rescanned and although my leg feels and look virtually normal, there are still a couple of small clots, so have to stay on thinners for a further 3 months and if still not gone, probably about a year in total, maybe more.  If I had come off them too soon the consultant said I could have had further clots, PE or even a stroke.  On that morning whilst I was having my scan, my bosses brother who is 61 had just that, a clot in the lung which caused a massive stroke.  He died on Friday night, he did not know he had a DVT, he just went to get a paper.  So before any of you come off the thinners please have another scan. 

    • grace42110
      grace42110 youngatheart1

      Posted

      Interested to read about your treatment. I was referred to a haematologist after 3 months and was told there would be no further blood test or scans, just told I would be on Apixaban for life.  I was monitored for 6 weeks by a DVT nurse but no scans given. My clot was unprovoked.  I was told they do not do any further scans or tests because it would not alter the treatment but was told I could get a liver/kidney function blood test done by by GP after a year if I was concerned about the effects of the tablets.
    • youngatheart1
      youngatheart1 grace42110

      Posted

      Hi, thanks for your reply, I think the ambulatory care consultant was cross because I was not given any support just tablets. It would have been helpful to have a DVT nurse to talk to about things as I was really panicked. I was diagnosed one day, tablets the next and then left, no blood tests, follow ups or anything.  I suppose all hospitals and GP's do things differently. I was offered a 2nd scan to make sure it was safe to come off Apixiban as I was told I would only need it for 3 months as he could still feel lumps, which I could not and said Apixiban for at least another 3 months maybe a year in total.  What did the haematologist do as apparently I should have been seen one of those as well? especially as apparently I have high iron. I hate being on thinners, but scared to come off in case another one happens and I get PE's next time.  

    • grace42110
      grace42110 youngatheart1

      Posted

      The haematologist did nothing apart from talk and put me on Eliquis for life necause my clot was unprovoked.  He did not look at my leg or listen to my lungs. Told me I could fly and scuba dive until I pointed out that PADI (The leading dive specialists) said it was dangerous and not allowed. He then looked it up on his computer and told me I was correct. A waste of time I got far more info out of the DVT nurse who was assigned to me for 6 weeks at the beginning. Was told not eveyone sees a haematologist. Hope this helps and that you eventually come off your medication. Good Health for the future.
    • youngatheart1
      youngatheart1 grace42110

      Posted

      Hi Grace, not stalking you I promise, but wonder if you have anything like this.  For 2 years following an allergic reaction to an antibiotic have had really weird heart palpitations and flutters, as I am 57 expected some due to hot flushes etc, but I got so fed up with the thuds, banging and racing pulse that was sent to see a cardiologist.  He said that I have atrial fibrilliation, apparently quite common as you get older.  Anyway the weird bit is that AF can cause DVT/Blood clots and the treatment for AF is blood thinners?  So now I am wondering whether AF caused the DVT or whether it really was HRT.  I don't suppose you have AF or palps or anything do you?  I am going ti speak to GP about all this to see if there is a connection. 

    • grace42110
      grace42110 youngatheart1

      Posted

      Hi,  Sorry I do not have AF although when clot was diagnosed my heart was all over the place and atrial fib was mentioned briefly but all OK since. My clot was classed as being unprovoked (I did not take HRT) hence blood thinners for life. My clot was complete leg from groin to ankle which then went to both lungs after starting meds. After care is nil and I am trying to get back to normal and not panic at every twinge/pain I get.  Really think there should be more support for people like us.  Hope all goes well for you when you speak to GP (and no you are not stalking me - nice to have someone to compare treatments with)
    • youngatheart1
      youngatheart1 grace42110

      Posted

      Hi, the fact that it was mentioned to you is a plus for me as my GP's made me feel so bad about even mentioning chest pains and basically told me to go away, it took 2 years to see the cardiologist, who was not impressed that I had not been referred earlier and then having the DVT. I am wondering whether if they had taken more notice it could have been avoided.  It seems all too easy to blame HRT, when millions of other ladies use it without problems. Unfortunately they are not going to admit anything so I will probably never know. Looks like I am going to be on thinners for life also. To be honest I was scared at first but now feel safer on them.  Apart from when I get achey from gardening, like today, I cannot take ibuprofen which used to be my pain killer of choice. Not seeing GP for a couple of weeks but will let you know how I get on.  Take care

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