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Multiple PEs both lungs 2 years ago and still get symptoms :(

Posted , 8 users are following.

victoria00849
victoria00849

Im 37 and had knee surgery 2 years ago.afterwards i developed the rare complication of multiple.blood clots on both lungs. I presented with sweats, riggors, fast heart rate (180) and shortness of breath. It was very scary i absolutely thought i was going to.die. Two years later though and whilst alot better in general i still suffer with recurrent symptoms. If i have a cold i can get quite breathless with it. Im.not gasping but id describe it more accurately as air hunger. It is a very uncomfortable sensation and my heart rate will be elevated at the same time. Also u can get episodes where ill get riggors and my heart with pound and ill feel shirt of breath my mouth go really dry and ill need a wee constantly..it can last 20min to several hours. In between these weird episodes im very well and noone else really apart from my family knows how unwell i can still be. The specialist at local hospital failed to diagnose my clots so i sufferred for 5 days before they knew what it was. He doesnt seem.bothered and barely raises an eyebrow when i mention these weird horrible symptoms i still get..surely 2 years on i should be normal again by now?!

Part of me wonders if they are recurrent clots but just smaller. Im on rivaroxaban lifelong so that seems unlikely but i guess possible.

Anyone had any experience like this? Thanks so much.x

1 like, 9 replies

9 Replies

  • Supertractorman
    Supertractorman victoria00849

    Posted

    Reading your note, I just wonder the risk of blood clots from knee surgery. I am currently waiting for TKR but had two lots of PE four years ago and am on Apixaban for life so wondering if I need to be concerned and if it will bring back pains I had until 2 years ago.

     

  • carrie27300
    carrie27300 victoria00849

    Posted

    H Victoria. I ended up with unprovoked bilateral multiple emboli a year ago and needed to be thrombolysed as very unstable. Was on CCU for a week. I then got a dvt whilst on warfarin. I am now on daily injections of daltaparin for life. During the last three months have had palpitations with very rapid heart rate and shortness of breath. I am now under a cardiologist who is investigating the cause. Got a cold early December, followed by the flu and now my hay fever has started. My lungs are definitely more sensitive since I have had the clots, My gp has put me in an inhaler which helps. If you are not satisfied go back and speak to your gp. Let me know how you get on. 
    • victoria00849
      victoria00849 carrie27300

      Posted

      Hi carrie

      Thank you for your reply.

      Yes my lungs are really sensitive too especially colds and heat/humidty.

      They wondered if my palpitations and shortness of breath was due to my heart but i had a clear echocardiogram. With a clear VQ scan last week after ending up in hospital (as my palpitations were 170 just walking slowly 140 at rest) i very uncomfortably breathless. They have just said its a virus!

      But my symptoms feel very similar to.when i was 1st diagnosed so.im struggling to.understand whats going on. I did see a gp last week who tried to suggest my fast heart rate was anxiety! Its hard to describe but when sitting still my heart pounds as if ive just run a sprint. Its varies throughout the day. Sometimes i can walk short distances comfortably other times like today im very uncomfortable moving at all. Im gonna rest this week and return to gp next week of theres no improvement. Honestly feel as if ive just reversed by 20.months in my recovery :-(

    • peter54321
      peter54321 victoria00849

      Posted

      Hi again Victoria,

      I don't think it's just you - I have had a much more difficult time since the weather got damp. The few times I have been good are when it was dry for more than a couple of days. 

      On the heartbeat side - could it be that your heart is "doubling up"  on the beats?  Mine does that sometimes. For example, beating at a steady 80, then jumping up to 160 for a few seconds or minutes, then back to 80.

      Hope ít settles soon.

      All the best

      Peter

  • samuels
    samuels victoria00849

    Posted

    Are you up the topend of the world smile, Northern Hemisphere where it's winter or coming towards the end of winter ? has anyone suggested that it could be pneumonia or pleuracy ?

    • victoria00849
      victoria00849 samuels

      Posted

      Hi samuels

      I live in England so we are just coking out of winter now. Spring begins in March here.

      I have had a slight cold but apart from a dry cough and snuffly nose its been unremarkable. My did try to suggest in hospital a few days ago that it was a cheat infection but my chest is clear i have no temperature and inflammatory markers are all normal . It seems absurd as although i do.experience symptoms when i have a cold nothing like this! 140 resting heart rate a d 170 odd just walking slowly. It feels.so.uncomfortable.

      Im a pharmacist so have medical knowledge but i just cant understand what is causing this?!

  • peter54321
    peter54321 victoria00849

    Posted

    Hi Victoria,

    I am just over 2 years since bilateral PEs and can relate to many if those issues, even down to the misdiagnosis and a week inbetween that and ending up in A&E. I do get irregular heartbeats, but then I have had a prolapsed mitral valve since birth, so hard to tell if it's the PEs. The main trigger for breathless seems to be either damp air or chest infection - get a few of those, but I do have scars on lungs, some quite old (?!!)

    On the positive side, I am still improving after 2 years, so hears hoping all the bad stuff goes eventually.

    Cheers

    Peter

    • victoria00849
      victoria00849 peter54321

      Posted

      Thanks Peter.

      I would say im usually worse when i have a cold or something.

      At the moment my breathlessness is horrendous. Really struggling to walk at all. I get attacks of feeling really shivery and then go very tachycardic.

      Then when the shivers past i feel slightly better but its very weird. I feel exactly like i did when i had PE s two years ago. Although after a clear VQ scan im really srumped to understand whats causing this..have been referred to a cardiologist and respiratory specialist so just really hoping i can het some answers soon.

      Take care

      Victoria

  • canadagal
    canadagal victoria00849

    Posted

    I also had hundreds of PEs in both lungs in 2013, also undiagnosed for 5 months.  I was very ill, thought I would die and was repeatedly told it was anxiety.  My respirologist told me that because of my heavy clot burden, there is scaring in my lungs making me prone to lung issues with colds and influenza etc.  I am on lifelong warfarin, so get lab work for INR done weekly.  A pain but I control that myself now.
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