Hello everyone I am on rivaroxaban and have been for over 3 years, but on blood thinners since 2009 due to numerous blood clots in both lungs (also in 1997 I had a massive clot in my left lung 7 weeks after having my son, on warfarin for 6 months) after the second pe I found myself being very breathless and so I got all the tests including a lung function test, they told me I had fibrosis of the lungs fine that's the answer, but this year I have noticed my breathlessness has gotten a lot worse walking to the end of the road I am wheezing and feels if I can't get enough air, but lying down is even worse, only a few Sunday's ago I was in a&e unable to breath, they said I had a temperature they tried the nebuliser but that didn't work, my blood pressure was high and pulse rate was too, I have an adnormal ecg, but they gave me antibiotics and strong steroids to take for a week but it hasn't cleared it, the doctor was very good and told me to see my gp and ask to be seen by the specialist for a check of the lungs and heart, I am still waiting to see my gp, has anyone else experienced this? Sorry it is long winded (unlike myself!)

10 Replies

  • Must be awful, do you have Hughes syndrome only asking because Post pregnancy clot, Hughes syndrome is on this health unlocked site also see Hughes foundation site.

    Please see your GP as soon as possible you shouldn't have to wait with symptoms like that if it were me I would try for an appointment today

    Hope you feel better soon

  • Hi Daisyd I have antithrombin def 3 found out in 2004, after my mum had 2 pe episodes but we can trace it back as my maternal grandfather died of a pe and also his mother. I have to see my own GP to get my referral so they say, she works part time and on holiday till next week, thanks.

  • Your symptoms sound very much like those of pulmonary hypertension. I would advise that you request that your medical team investigate this. Good luck!

  • Thanks smythian, have to see my GP on Thursday so should know more then, it's just a waiting game I am only 43 and feel more like 63! Fingers crossed I get to the bottom of the symptoms.

  • Just home from the doctor, she thinks it's asthma and has asked for another pulmonary function test, home with a salbutamol pump to use, so another waiting game.

  • I would suggest that you request an echocardiogram just to rule out any possibility of pulmonary hypertension. This test can measure the pressure of the valves in the right hand side of your heart. An abnormal ECG and your other symptoms indicate more than Asthma. Best of luck!

  • Thanks Smythian, the pump doesn't work anyway! Gone to wait till after the lung function test is done shouldn't be too long she wants it done ASAP then take things from there thanks

  • Ok a quick update! It isn't asthma as thought I have had a chest X-ray today and am getting pulmonary therapy for 6 weeks and an appointment for the chest consultant, just want an answer!!! Function test is reduced, have pulmonary fibrosis so what's caused the increased breathlessness have to wait and see..

  • Hope you feel better soon, thanks for telling us how you get on

  • Good morning just a quick update, after being taken to hospital again with breathlessness I gave seen a fantastic doctor who then confirmed that I do have chronic asthma (spiro 225) and copd and that the condition does get worse year on year, just wanted to know if anyone had the same problem due to the damage of blood clots in the lungs? now on high dose inhalers and steroids.

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