Multiple PE on both lungs-tips?!

Posted , 18 users are following.

Hi, after a couple of weeks of what I considered to be pneumonia...my GP sent me to hospital to be checked as he said my shortness of breath wasn't sitting right with him as I am on the combined oral contraceptive. So off I trotted for precautionary tests to rule out PE and so I could get stronger anti-biotics and today they have confirmed I have clots on both lungs.

Gutted isn't the half of it. I am 28, (female), walk 2/3 hours a day with a few sets of dogs and have never smoked! The only risk factor is the pill.

However now I am getting over the shock (I think!) and the "woe is me" and trying to think positively.

So are there any of you lovely PE survivors able to offer a newbie some advice...about what to ask the doctor tomorrow, lifestyle changes you had to make, issues you've had...anything I might find useful?

Thanks in advance!

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  • Posted

    Hi there I am a Newbie,42 year old guy with factor v Leiden roughly 4 1/2 weeks in since my bilateral pe, how's the shortness of breath ?? Mine has just about worn off but I still have a dry cough that's just not going.

    I have multiple clots in both lungs , I have opted for rivaroxeban , less messing with tablets , less visits to hospital etc .

    My best bit of advice is read as many threads on here as you can , take it really easy , I have 2 jobs over 14 hours a day and I went back after 2 weeks , knocked myself out tired in 2 days and am now signed off till next week, so don't do too much too quickly !!

    Hope this helps I am still trying to find out bits of information , this is a very helpful place with nice people so stick around

    James

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    • Posted

      Hi Jimmy...thank you for your super quick reply!

      My breathlessness manifests whenever I exert myself...worse in the mornings. Had my first dose of Clexane yesterday and second shot today. And it's already helped with the breathlessness. That's what scares me yesterday evening as I was convinced I had pneumonia but the shot helped me. But even still I was convinced the tests were going to come back clear.

      Tomorrow I start apixaban (think it's that one) that's taken orally but doesn't need monitoring like warfarin.

      Will try take it easy...it's hard when you're a mum of two who works! Will keep reading.

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  • Posted

    Hi

    I had a PE my risk factor was estrogen pills.  I did not smoke.  My advise is to get the best advise from everywhere.  Be proactive.   See a hemotologist and  see a Pulminologist and go from there.   

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  • Posted

    I'm not familiar with either of those meds names , I had heparin injections in the hospital , and now the rivaroxeban . My breathlessness stopped within 48/72 hours , and my cough is still happening now.

    At the moment I am having ups and downs with the whole mortality and situation , apparently most people are prescribed anti depressants at the same time but I don't like taking tablets at the best of time , and so I just go and sit quiet somewhere away from my wife and grown up kids and just listen to some music and try not to dwell on the how's and whys of the whole thing

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    • Posted

      From what I am reading...if you have made it this far then sounds like you have beaten the hardest part. But it is hard. I spent the evening balling my eyes out questioning my own mortality. Suddenly I feel a lot less invincible!

      I hope you feel better soon. But I will be asking about the mental/emotional side of things tomorrow.

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    • Posted

      It's very odd , I mean I never really thought about anything too "deep" before regarding my mortality etc , my whole family have been telling me I'm being to casual etc etc , but occasionally I just think oh bugger I'm lucky to be here and things like that .

      I would honestly say just talk to the people on here , your family and doctors and take each day bit by bit , and take any odd pains seriously , especially chest or back . I had a bit of a wobble a few days ago when my chest between shoulders and moobs hurt , went to the hospital and they did very thorough ecg blood tests etc , couldn't fault them , and the doctor said look go steady you will get pains but if they are that much they worry you come back and see us , in this case it is literally just pains !

      Hope this helps a bit , it's all a learning curve , I am still reading into this but not a huge amount of info there after care wise hence me posting on here

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    • Posted

      Thank you so much Jimmy.  That's my issue at the moment...I am becoming hyper-sensitive to everything.  So like now my eyes are a bit blurry.  I barely slept last night as my little boy was up all night being sick...so it's probably tiredness.  But my first thought is wwhat if clots have dislodged.  So I can see how it affects you mentally over time!!
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    • Posted

      Yes it can , but remember you are young , I am guessing no signs of anything related prior to this , and you have come here , so try not to stress ( I know it's not easy trust me ) and throw up questions to your gp as well as here , and most of all try to go steady !!!

      I know this is all simple advice and in the real world it's tough but I found people on here welcoming and helpful and remember to one degree or another we are all in the same boat so we can all help each other

      All the best !!

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  • Posted

    Hi

    I also had heperin in the hopital.  They then gave  me a Clot buster called a TPA ?.  The clot buster was the big help.  Up to that point i could barely crawl out of bed to the john.  One I got the clot buter i felt 100% better but after  I left the hospital I started having with being breathless when ever I walked or did excercize.  The breathlessness has gotten much worse.     Now I am seeing a Pulmonary Hypertesion specialist that is a Cardiologist and he thinks I have residulal scar tissue in my lung from the original PE blood clot.  We re doing a lung scan next week and depending on what that shows I guess we will go from there

     

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    • Posted

      Wow sounds like you have really suffered from this!!!

      I hope I am not going to jinx myself but I have had almost no pain with this...aside from about ten mins of sharp chest pain (which the docs jumped on!). I hope I don't suffer like that. I am hoping the symptoms I do have start getting better.

      It reminds me to mention though...I received the diagnosis and then was sent home. Think it's why I feel so helpless and vulnerable at the moment!

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    • Posted

      HI,59.5 FEMALE have multi blood clots in lin lungs. Sittingvhere after lung surgery (reallyvhurt called a VATS).. thinking what acwaste of time,stress,pain. They the drs thought they were cycts called it langerhans,it wasn't but now they saying i got bi lateral arteriol blood clots. I live alone, a retired nurse and afraid to be on comadin. The labs,strapped to drs,hospitals,labs esp..then side effects. Very depressed. Got hemotologiet and pulmonologist but the bi deal to me is i have a rare disease called nutcracker disease. My left kidneyvvein wrapped under my aorta and dialated and arteries clogged on right kudney the left vein is bad with ncd a very rare syndrome,,past the kidney on left is huge varacies and ct looks like someone through intestines in for vascular system of left kidney. I feel like living my life and forgetting im sick. Sometimes i font think its worth prolonging and it seems myvfamily tired of my topics. Me being afraid,cut up and sick and needing rides or just even someone to talk to. Oh well hard prolonging all this when just dying a natural death may be easier for all. I sometimes jyst want to go to heaven,im getting so sick ofcbeingcmixed up with myvown health care. My pcp sucks,she can care less. I got specialusts forcevery vital organ but a;domen liver type things hopefully ok,ty God. Oh wellbhad to vent. Who can know whats right,right treatment or medicines,it seems i am slipping away...afraid,to live,to take meds,treatments,and i suppose to die.

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    • Posted

      Just read your story.  I am four years since bilateral pes. Came from nowhere. On warfarin for life, and now anti deps as i couldnt pick up but they havent helped really.  

      Physically breathing is ok, just dont walk uphill.  Its the mental scars which dont heal for me.  Try not to beat yourself up and look on bright side.  You are still here.  I just think i feel compromised and that has been a big shock, thought if i led a clean life i would be ok.  Obviously not.

      there are many people a lot worse off, try to think that way.

      happy tomhear from you if youre down.anytime

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  • Posted

    it sounds as though everything is under control and you are going to be fine but continue to be pro active.  You must be your own advocate.  Have them do everything you think should be done.  See specialists.  Get second opinons.  Read everything you can.
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