2nd PE in 9 months

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i had a large bi lateral PE in July 15 which nearly finished me off! was put down to a DVT from a long journey in a car (8 hours) - i was put on Warfarin, and sent home. I went to my GP and we came up with a plan (i didnt want to be on Warfarin - or anything else for that matter for life. So we planned that in December i would have a CT scan to make sure the PEs had gone, which i had - and they had gone. Then i came off of the warfarin at the end of January, and gave it around 6-8 weeks to get out of my system - then i had a Thrombophilia test to ascertain whether i was at risk of further PEs - the test showed i was not, and i was given the all clear - 1 week after the all clear, i started struggling to breath again, and recognised all the old symptoms plus a few more - chest pains etc - i took myself off to hospital, where i was scanned and found out i had several more PEs! - furter blood tests revealed that i have mild Protein C deficency in my blood - which is a known cause for PEs - so much for the tests eh - now i'm on Riveroxaba, and actually - i'm not so worried about taking it for life any more! - currently still have the PEs - but trying to get along as normal as possible - mind you i feel like a heavy smoker at the moment! PS - smokers usually die from these.

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10 Replies

  • Posted

    Crikey, it sounds like your doctor did all the right things and you still got a second hit.

    i do hope that you start feeling better soon as the medication allows your body to deal with the PE's

    Both my sons seem happier on Rivaroxaban than they were on Wararin and not appear to have any side affects.

    i'm really sorry you had to go through both episodes and the pain and worry that goes with blood clots in the lungs. 

    Welcome to the "lifer" club though. I actually feel quite reassured now I'm on the medication and slowly regaining my health and fitness.

    well done for surviving again smile 

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  • Posted

    What kind of doctors re you going to?  It's good, I believe to be  proactive with the kind of doctors or specialist you select.  If i had it to do all over again, I would include a Hemotologist and a pulminologist as specialists I would want to touch base with them on a regular basis.  I would suggest you read  all the posts on PE here  and see what you think might be best for you.  i suggest you stay very involved and very proactive in your own behalf.  Become an expert on your own problem.  I have had on going problems from my original PE and am sorry I was not more proactive at the beginning.
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    • Posted

      Hi, i had bilateral pe's 2 years ago.  Told imhad to have warfarin. I hate taking it and want to change to apixaban.  No follow up from pulmonologist or haematologist since original event but want to see one now.  GP not musch use. How do i get appointment privately to discuss this with consultant?

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    • Posted

      I guess that means I just have to live with the after effects and cannot discuss change in medication with the professionals.

      Surely there must be someone to get advice from, GPs are not qualified enough to do this much as they do a food job

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    • Posted

      Hi ann12538,

      The 'after effects' as you say need to be documented, the medication is bolted onto a Nice Guideline, and the professionals refer to the guidelines as gospel.

      In my case I was given rivaroxyban when it was a prelaunch UK drug back in May 2014, after a medium DVT & PE without written consent under nice 287. It was an option, health professionals could adopt. I had a massive PE in early October 2014, apparently due to compliance issues. There was no investigation into the issues, Nice 287, failed to accommodate for someone like me.

      The official UK launch for rivaroxyban was last week of October 2014. Rivaroxyban was rushed through without pragmatic analysis or practical pathway to people with recurring provoked or unprovoked VTE of escalating or diminishing size, quantity and locations of clots, and the affects this has on a person's well-being.

      All clots start somewhere, in suspension or anchored to a deep vein. Depending on the cause, clots either increase in number or increase in size. Each instance of VTE can have a different cause or source from the same subject person.

      I can go on and on, but this falls on deaf ears.

      I think it's sad. I am hopeful, authorities that genuinely care will pay heed to what I say. Not only does multiple VTE zap your energy, when you try and rebuild and get your life back, you are waiting to old clots or clots to detach again, and that may be it. You see, rivaroxyban does not dissolve clots. You body is meant to do that, I've been told that in some instances, clots stop dissolving and maybe scar over.... what's to stop the old scarred over clot from detaching after a massive PE? Or what's to stop old residual clots detaching from anywhere in your body? You have a limited number of vessels from the pulmonary artery to your lungs, each blockage large or small tentatively reduces the fresh blood oxygen intake into your lungs.

      Also, another worry for those that have recurring clots, is the thought of clots breaking off from other circuits within the body, is stroke or heart attack. To be honest, massive pulmonary embolisms should be treated with the same seriousness as a major heart attack. The difference between the two, is that I believe the heart attack patient either dies or survives with recognition and support. With major PEs the course of action is taken one tablet a day to thin the blood, you might get anxious or stressed. Very scary stuff, and no-one really knows what its like.

      It takes time to get used to it, but your life changes, as you're faced with the chance of death everyday thereafter, and there's nothing you can do about it other than letting go or being really really careful. Another dynamic will be the age of the person having VTE and the responsibilities, obligations that person has, parenthood, job, business, mortgage, rent...all these areas add to anxiety, stress, depression, physiological trauma, mental trauma and so on.

      I hope this helps someone out there.

      This is my opinion though.

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    • Posted

      Ann, I'm in the UK and I just phoned my nearest private hospital. I had issues with the vein in my leg so chose to see a Vascular Surgeon. Following wing his advice I changed medication and it as certainly been a help for me. It cost about £180.

      if you just look up your nearest private hospital and give them a call the receptionist should be able to book a private haematologist appointment for you.

      of course, your dr surgery should help and advise too. 

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  • Posted

    Why do you hate the warafin

    I have been on it for years.  The frequet testing is annoying bUT if you have no side effects I would not change.  Lots of the new drugs have serious side effects which I think should be your primary concern

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    • Posted

      I hate warfarin because i need antidepressant and anxiolytics but there are very few allowed with anticoagulent and ive tried them. Still no energy and very depressed
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    • Posted

      hi all,

      i think the 'warafin delivery' encourages support and engagement for those that have their initial PE. The support comes in the adjustment of diet and to an extent lifestyle - furthering awareness of the condition. This is beneficial for those with close family, friends and relatives. The size, location, quantity and severity of the clot/PE will temporarily immobilise the person. So buying and preparing the correct foods becomes a serious issue, and priority concern. 

      Some people have a fear of needles and so taking a tablet (vitamin, paracetamol, rivaroxaban, apixaban) is easilly administered. 

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