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Multiple PE on both lungs-tips?!

Posted , 18 users are following.

Keniki
Keniki

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!

1 like, 41 replies

41 Replies

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  • peter54321
    peter54321 Keniki

    Posted

    Hi there,

    Seems like you have already got some good advice and you also have two very strong cards:

    You are 28

    You were on birth control, so probably know the origin and can stop it.

    As far resolving the clots goes, I am not sure that the anticoagulants have any effect on that - they are to stop clots forming. As a previous person has noted - there are clot busting drugs, but they only appear to use them in particular cases where the blockage is an issue.

    I had a large quantity of large clots on both lungs and was told my body would dissolve them over time. It has and my breathing has got better and better (and I am twice your age). I was told exercise is good (and for me it was) just check with your specialist before you go on any marathons.

    My advice for your appointment would be to note down all the things you can find on here and make a list of questions for your specialist. If they are anything like mine, they expect questions and would rather you asked more than less.

    You have been through the hard bit, now just keep moving and enjoy yourself as you get back to normal.

    All the best

    Peter

    • Keniki
      Keniki peter54321

      Posted

      Hi Peter...thank you so much.  This is a very positive post and I thank you for it!  I asked quite a few questions but have tonnes more!! I think most of my worries are the long term impact of this...but you have done a little to quash some of my fears!! 
  • barbaraG
    barbaraG Keniki

    Posted

    I have been on Warafin for a long time.  My primary doctor, I believe he is a Pulminary specialist,  has not switched me to the newer medication and so far my Pulminary Hypertension Specialist (also a cardiologist) has not reccomeded a change.  The only positive thing I see about the Warafin is that I do have to see my Primary every month and that serves for me some kind of control factor?

    If I had to redo everything I think I might have used a hemotologist for my primary to monitor me but I don;t knwo if this would have made the difference but I think it would have been a better choice for a gate keeper on my PE problem

     

    • Keniki
      Keniki barbaraG

      Posted

      Thanks Barbara.  I have not been given Warfarin...which surprises me because a lot of what I have read says treatment usually starts with Warfarin.  I have just begun my treatment of Equis Apixoban.  So not sure how it will agree with me.  Read some nasty stuff about Warfarin.  I do feel like I've been thrown in the deep end.  Have to book a doc appt for after Easter to get any answers/referrals.
    • peter54321
      peter54321 Keniki

      Posted

      There seem to be three main treatments in the running - Warfarin (aka Coumadin in usa), Riveroxiban (Xarelto) and Apixaban (Eliquis). I was originally on Riveroxiban, but didn't get on with it and switched to Warfarin.

      The Warfarin is ok, but I have been told Apixaban is looking like a good option.  They all work differently, so will affect different people in different ways. (sorry about the ugly grammar...).  Sounds like you have the pick of the bunch....

      All the best

      Peter

       

    • Keniki
      Keniki peter54321

      Posted

      Thanks Peter. Yes I guess I do! I hope things go smoothly from now on.
    • debby01
      debby01 barbaraG

      Posted

      Hi Barbara

      Do you know what the pressure was after being diagnosed with

      Pulmonary Hypertension? Did you need to have surgery? I have

      been diagnosed with Pulmonary Hypertension and need to

      have surgery.

  • steve_1966
    steve_1966 Keniki

    Posted

    Hi and welcome,

    sorry to hear you've been diagnosed with PE's but very glad they seem to have caught them early.

    i'm 7 weeks since mine and I'm now much more aware of my condition and what it entails. There is some good advice on this site and I've also joined a couple of face book sites for PE survivors. I even found one for people who run post PE's.

    everyone's journey is different but I agree it helps to find out as much as possible about your condition so you can deal with it.

    i feel incredibly lucky at the moment. The doctors took too long to find mine but they found the clots. I'm on Rivaroxaban (moving to Apixiban shortly) and my condition is being treated. I feel a little better every week and I'm now excercising quite regularly.

    Stay positive, listen to your body - rest a bit more than you think you need to at the moment as your diagnosis wasn't long ago and find out as much as you can. You may be walking the dogs again soon (take someone with you for comfort and confidence)

     

    • Keniki
      Keniki steve_1966

      Posted

      Thank you so much Steve. Sorry to hear you have had such a rough time with it but I'm glad it's being treated and there is a lot of good advice in your post so thank you!
  • SamP23
    SamP23 Keniki

    Posted

    Hi

    I was diagnosed with multiple bilateral PE back in September along with pneumonia and pleurisy. I'm 50 in 2 weeks and generally in good health.

    This all went undiagnosed for 6 weeks and I went abroad on holiday during that time. To cut a long story short I had bloods done when I came back and my Ddimer score was 3000 plus (normal person is under 500) so was given a chest xray and the pneumonia was diagnosed. A week later after 2 lots of heavy duty antibiotics I still felt rough and the breathlessness and chest pain was immense so after another trip to hospital and more tests the bloods showed a score of 8000! The only explanation being PE so had a CT scan which showed the PE up.

    Was put on Rivaroxaban and told I was very poorly and had a life threatening condition..... what a wake up call. I was told I'd have to be on the medication for 6 months minimum.

    However things have improved dramatically. I was referred to the haematologist by my GP as my condition was unusual with no DVT or any other reasons why I should get these clots. I had a full pre 50 MOT as my husband put it! Mammogram, abdominal pelvic and vaginal (sorry guys!) Scans and a heart scan. All normal. More bloods etc. Initially I was told I would have to stay on rivaroxaban for life but my latest appointment with the haematologist proved very informative.

    My ddimer is now back to 200! My breathing was still bad but the consultant said it was down to deconditioning and I should get on with trying to get fitter again but take it gently and that the decision was mine whether to come off the Rivaroxaban when my 6 months was up, stay on them for another 6 months or stay on them for life. We discussed the pros and cons and what the likelihood of this all reoccurring again was and fortunately for me I fall into the lowest category. I have a week left of the tablets and I am.choosing to stop taking them.

    You being young and female is a good start.

    Rivaroxaban is a new drug with very little follow up compared to Warfarin and no jabs like Clexaine. You can go about your daily life and try and put all of this down to just happening. We're all still here so our time isn't up yet and I am sure we've all got lots to live for.

    Try not to dwell and get as much rest as you can but exercise gently... the clots will dissolve in time and whilst on the medication none will form so keep that st the forefront of your thoughts.

    Sorry for the essay.... hope it helps.

    Good luck.

    Sam x

    • Keniki
      Keniki SamP23

      Posted

      Hi Sam.

      Thank you so much for your heart warmingly positive response!! I mean it...I could almost cry. I have read so much and joined groups on Facebook but there is so much negativity (understandably!!!!) on this subject and very little positive. I am finding this hard to live with mentally. I used to lie getting into bed at the end of the day but now I dread it in case I don't wake up. I have so much to live for as you say....two kids plus I want more. My life is finally in the best place and this happens. I just needed to read something positive.

      So on a positive note...I had the VW scan which I am not sure is meant to actually show the clots but it just showed areas of "under perfused" plus the fact my d-diner was only 599 (I did think that was high but realise it isn't)....plus my symptoms are practically gone...I really hope the clots were small and I am on the mend permanently.

      Sorry if this post makes no sense...I've gone all emotional haha!! Thank you,

    • Keniki
      Keniki

      Posted

      VQ scan even!
    • Jimmyb5374
      Jimmyb5374 Keniki

      Posted

      Hiya , your d dimer score is coming down nicely , mine is still over 800 . Hopefully you will be nicely on the mend , just listen to your body and remember we are all survivors here , and we can all lend an ear and share our own experiences , in a way we are our own advice board !

      Tiredness is my main issue with rivaroxeban, but other than that it's just keeping our heads on straight and realising we have had a bad spell but we are lucky , that's how I am dealing with it at the moment anyway

      James

    • Keniki
      Keniki Jimmyb5374

      Posted

      My d-dimer was only 599 to begin with. Not had it tested since. I thought this was high but I now realise this is only slightly raised from normal!
    • Jimmyb5374
      Jimmyb5374 Keniki

      Posted

      Yeah that's pretty good !! Mine when I went in to hospital was 6019 so I'm quite a lucky guy to be here !!

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