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PE 15 months on.

Posted , 5 users are following.

nick58
nick58

I had a massive PE 15 months ago and to start with recovery seemed to go well  Warfarin for 6 months then no medication. However during the past few months I have suffered from chest pains, shprtage of breath, general tiredness and overall not feeling wel. Have been checked out with the respiratory clinic but they have discharged me saying that they cant find anything wrong. I have an appointment with the cardiologist in 3 weeks time. Do I have the symptoms of pulmonary hypertension? Or is this normanl for a massive PE?

0 likes, 5 replies

5 Replies

  • barbaraG
    barbaraG nick58

    Posted

    I don't know if it is normal but I would, if the Cardiologist finds nothing check it out with a Pulminary Hypertension specialist.  If there is a large residual clot or a scar from that original clot that might be the cause. Ut can be removed with one of those new Vac procedures
  • wendy75
    wendy75 nick58

    Posted

    Hi, Nick - I have had exactly the same experience. I had multiple clots in both lungs 17 months ago and was discharged from respiratory medicine. I recovered somewhat and then all progress just stopped. I was still completely breathless doing the slightest exertion, even washing dishes! I've been terrified and finally convinced the GP to refer me back to respiratory medicine. I saw a different doctor who told me that although the recovery time is said to be six months, that is recovery from the clot and doesn't mean your respiratory "fitness" will return that quickly. Although I am going to have lung function tests, I feel much relieved and am now undergoing pulmonary rehabilitation, a supervised exercise program with educational tips on living with lung problems. It's really great! Good luck with your recovery - it's a very slow process.
  • Allexie
    Allexie nick58

    Posted

    Hi there

    I too had a massive P/E 15 months ago!  Was on Warfarin for 9 months and now on Rivaroxaban, (or similar), for life.  I have never got back to feeling truly 'well' either.  Like yourself I have chest pains, breathlessness, lack of energy and also dizzy/lightheaded spells.  Since my initial diagnosis I have had follow up ECG's, chest x rays and a heart echo and was told all were OK.  I have been discharged by the respiratory specialist but am still waiting for an appointment with the haematology consultant which should have happened a year ago.  I feel quite despairing sometimes....is this how it is always going to be now??

    • wendy75
      wendy75 Allexie

      Posted

      I too have had all these tests and all fine and I still have the same symptoms. I'm also on rivaroxaban for life. If nothing is structurally wrong after your haematology appointment, I would suggest asking about pulmonary rehabilitation. I'm just a couple of weeks in and have several more to go, but it really is helpful and I'm seeing small improvements. 
  • barbaraG
    barbaraG nick58

    Posted

    [u]I was never referred to a specialist and I think that was a big mistake.

    I think think that everyone who has had a PE should be followed up by a hemotologist.  Each year I have been feeling worse.  I am unable to do any excercize,  and at this point I can only walk a very short distance wihtout feeling breathless  Recently I went to a Pulminary Hyperesion specialist and he thinks I might have Pulminary Hypertension from a residulal scar from the clot from the  first  PE.   If that proves to be correct, and we have to do a Lung Scan next, he would advise a Vac procedure to remove the scar[/u]

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