Pulmonary embolism after care😢

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Hi, I am generally fit in my 50s and been travelling for six months and now I have a PE, 4 weeks on.

My doctors give me little information and I feel a total nuisance so I am hoping someone on here can assist or share similar problems. 

I have been on blood thinners for 4 weeks, initially the pain went but now it has gradually returned.  Not horrendous just constant. Has anyone had similar experience?

many thanks 

ps 

i intend getting on with my amazing life and look forward to hearing from you.

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  • Posted

    I had a PE after cervical fusion - which apparently is very rare. But they didn't know where the clot came from either. My father passed away from a PE after surgery too so what a shock to be in the same scenario 25 years later! I had every genetic test done for  PE and all were negative.

    ‚ÄčAfter the few few weeks I felt much better. But then¬†symptoms started up but they were different.¬†Shortness of breath was persistant for 5 months as was pain in my chest.¬†It just came out of the blue.¬†Finally now that has pretty much subsided. Don't have all my energy as of yet but that is coming back. I just had a VQ scan and all the emboli are gone!

    So it does take time to feel better.

    ‚ÄčI see¬†a pulmonologist every month and a hematologist every month.My care has been excellent. I get my blood checked once a month.¬†I think it is important to be proactive and if you don't feel like you are getting the care you need then try to see another doctor. I had another CT scan at three months and as I was still having issues was sent for a¬†VQ scan.

    ‚ÄčMy pulmonologist told me there is usually some permanent damage but it often goes unnoticed unless the person is an athlete. You do have to watch for the PEs not dissolving over time as this can cause further issues.

    ‚ÄčI ended up having to go on an antidepressent as a few months after the diagnosis as¬†I started getting overwhelmed with anxiety. My pulmonologist thought it was PTSD from my experience.

    ‚ÄčThe illness¬†effects everyone so¬†differently.

    I am on Rivaroxaban ‚Äčand have done okay other than being tired.

    ‚ÄčTake care!

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    • Posted

      Hi, reading your experience is a great help, thankyou. 

      My Drs practice consists of numerous Drs, I rarely see the same one. I want to be referred to a specialist but it is not deemed necessaryūüėü Haematology thought it not necessary to see me! ¬†But I will push for it again.

      I so understand how anxiety can grip you. Initially I was suspended in shock that I had it. I was told about complications if I had a fall whilst on the thinners, every step became a hurdle. Fear was flying through my brain but I felt ridiculous telling anyone.  I was afraid to plan.

      i regularly pull myself together, the clot was found. I am meant to be here. I am so enjoying life that this is not going to take over it or even be the major talking point.

      sharing and reading your experiences has been a huge help, thankyou 

       

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    • Posted

      Lazeedaze, no I am in the US.

      ‚ÄčI regularly see a pulmonologist for lifelong asthma. She was shocked that I got PEs and was very concerned to say the least. She jumped right on my care.

      Don't let any one minimize your condition or treatment.

      ‚ÄčThe hematologist told me physicians regularly downplay PEs. He said he does lectures all the time and sometimes he feels like it falls on deaf ears. The thing with PEs, as you probably know, is that the blood thinners only prevent new ones from forming. They don't take care of the exisiting ones. If they don't dissolve you can get pulmonary hypertension amongst other things. So listen to your body.

      ‚ÄčMy tests show mine are gone. I'm starting to get my energy back, Lexapro has helped me with my anxiety and depression, I'm not getting that unique shortness of breath that is very different from asthma. It's like coming out of 5 months of darkness. Anyone who hasn't experienced it¬†can't understand¬†what it is truly like - except perhaps for our loved ones. There's the worry, the uncertainity, the fatigue, etc.

      It's truly a life changing experience!

      ‚ÄčAnd then when you are back to health it's a wonderful feeling!

      Keep us posted!

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    • Posted

      Hi Patricia

      I somehow thought you were not in the UK.  Our NHS can be excellent but at other times it is a bit overloaded.

      Good luck with your progression, it is good to know that my feelings of anxiety and fear run parallel with so many other people in the same position.  I am fortunate that I can generally smother those black clouds.

      I will follow the route of Steve on the forum and look for a private consultation in order to help me get a plan for my future. 

      I think I need to test myself more in relation to exercise, I am not getting out of breathe with walking 3-4 miles a few times a week so I must try something a bit more exerting. I look forward to not feeling tired, not feeling light headed and feeling normal. 

      My dream was to join the world yacht race, believe me I need a lot of work before that will ever happen but between you and me that was/is my target. I'm even laughing at me typing it down. haa.

       

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    • Posted

      Hi Patricia

      I somehow thought you were not in the UK.  Our NHS can be excellent but at other times it is a bit overloaded.

      Good luck with your progression, it is good to know that my feelings of anxiety and fear run parallel with so many other people in the same position.  I am fortunate that I can generally smother those black clouds.

      I will follow the route of Steve on the forum and look for a private consultation in order to help me get a plan for my future. 

      I think I need to test myself more in relation to exercise, I am not getting out of breathe with walking 3-4 miles a few times a week so I must try something a bit more exerting. I look forward to not feeling tired, not feeling light headed and feeling normal. 

      My dream was to join the world yacht race, believe me I need a lot of work before that will ever happen but between you and me that was/is my target. I'm even laughing at me typing it down. haa.

       

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  • Posted

    Hi I'm new to this forum but just wanted to say that I was diagnosed with multiple bilateral PE last September after a bout of pneumonia and pleurisy. I had a ct scan and d dimer test when I was still in pain after I finished my antibiotics for my pneumonia. I was put on Rivaroxaban for a minimum of 6 months however I have been seen by the haematologist and had numerous tests and scans to see where my PEs came from.

    I've had no side effects apart from a few nosebleeds and heavy periods (sorry probably too much info). The haematologist is concerned that the clots may have damaged my heart so I am having an echocardiogram tomorrow and a review with the haematologist on Tuesday.

    All good fun hey.

    The worst thing for me though is I still breathless when walking up hill of up the stairs and I can't walk and talk and my heart pounds.

    I've also been told it is likely I'll be on thinners for the rest of my life.

    If you're worried you should pester your GP..... problem with this type of illness is you can't see it getting better not like say a broken arm.

    Anyway enough rambling.

    Here's to all us PE sufferers keep taking the tablets. X

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    • Posted

      hi Sam

      i did pester my GP and at last she listened and I am being referred. 

      Thanks for all your info, all these comments have given me confidence to question my GP.

      It is the lack of info that I find so disappointing. 

      I read that playing a sax is good for strengthening the lungs so I have dragged mine down from the loft. 

      Good luck Sam and let us know how your doing. 

      Beth

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    • Posted

      I was never aware of a d dimer test when I had a PE in my lung.

      I am on warafin for ever.  I had a second  PE after the first one.  What are the negatives to warafin?   I am suppossed to be followed mothly and an INR test  plus a panel of blood test are taken monthly by my primary doctor.  Since most people going to a hemtologist  get their blood tested monthly what are the disadvantages vs advantages of taking the  newer drugs (other then warafin) ?  I am in New York in the USA and really gven shockingly little information.  Why don't doctor send patients with PE home with a packet of information on PE plus tell them to investigate this site and other informtion on the internet???  I have been telling my doctor for years how breathless I am and he has been saying it is because I am not excercizing when in fact I am too breathless to excercize.  I can not even walk up a flight of stairs without being breathless or down a long corridor.

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    • Posted

      Hi Barbara

      The main difference that i know between warfarin and rivaroxaban is not having to have constant blood tests and watching what you eat and the alcohol you drink and it can be hard to get the levels right.

      I don't know if the testing is different in the US but it might be worth asking if they do a ddimer and see what they say. There must be something stopping you improving with your breathing.

      I have had to push myself more to do the exercise and work through the breathing only because the consultant told me that it is generally due to deconditioning.

      Hope you can get somewhere.

      Sam

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    • Posted

      Hi Sam

      Thanks, but no one ever even mentioned the word ddimer to me.  The first time I had the PE I just colapsed walking into a meeting and when they took me to the hospital they thought I had a heart attack and it took 2 days to figure out it was a PE.  They then gave me a clot butster (TPA) and I recovered immediatly.  Once I got off the warafin I had a another PE so I am on it forever along with Blood pressure medication and satin.  Now I am breathless if I walk 1/2 a  block or go up a short flight. I have been breathless for yearrs and only know has a pmonary Hypertesnsion specialist told me he believes it is a scar in my lung from the original blood clot.  It is getting worse and is totally debilitating.  I am angry at myself about not being more proactive and really sorry I did not see a hemotologist and a pulminary specialist from the very beginning,  I think my primary doctor did not know enough about PE

       

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    • Posted

      I was told that the D dimer test they sometimes use is not very effective.  It gives false results.  I am also on warafin had 2 PE's in the past 3 years.  I also questioned me switching to the easier newer medicines.  I was told that only warafin has a counter medicine for thinning of the blood.  So say I have an emergency and I'm losing blood the only medicine they can reverse that from happening is Warafin not the newer drugs.  So even though the monthly INR tests( which some insurances will approve a home test recommended by your specialist or primary care doctor) and the keeping the intake of vitamin K evenly in my diet is so worth it in case something happend were they need to clot my blood fast.
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    • Posted

      Hi ksun,

      I'm on a newish anticoag, rivaroxyban- personally my side effects (go through phases) are bleeding at the gums. Taking medication is an important factor for me, also environment, lifestyle and a selection of exercise routines affect old residual clots & muscle/tissue CNS/peripheral nervous system memory stresses pains, and also emotional and stress triggers and knock on effects!!!

      I prefer not to jump, induce shock to my muscular skeletal system, or bruise myself through conditioning, punch bag or being boisterous. It takes a little adjustment for the young at heart forty-somethings.

      I've started cycling last week (after two years +/-). I prefer to annoy pedestrians than get clipped round the back of the head by a wing mirror.

      Take care

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  • Posted

    Hi I'm new to this forum but just wanted to say that I was diagnosed with multiple bilateral PE last September after a bout of pneumonia and pleurisy. I had a ct scan and d dimer test when I was still in pain after I finished my antibiotics for my pneumonia. I was put on Rivaroxaban for a minimum of 6 months however I have been seen by the haematologist and had numerous tests and scans to see where my PEs came from.

    I've had no side effects apart from a few nosebleeds and heavy periods (sorry probably too much info). The haematologist is concerned that the clots may have damaged my heart so I am having an echocardiogram tomorrow and a review with the haematologist on Tuesday.

    All good fun hey.

    The worst thing for me though is I still breathless when walking up hill of up the stairs and I can't walk and talk and my heart pounds.

    I've also been told it is likely I'll be on thinners for the rest of my life.

    If you're worried you should pester your GP..... problem with this type of illness is you can't see it getting better not like say a broken arm.

    Anyway enough rambling.

    Here's to all us PE sufferers keep taking the tablets. X

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    • Posted

      HI Sam,

      You said:

      "The worst thing for me though is I still breathless when walking up hill of up the stairs and I can't walk and talk and my heart pounds."

      The breathless part should be what you address now,  because my breathlessness, although I had a PE (2) many years ago has gotten much  worse.  My primary doctor kept telling me it was because I did not excercize ( which I could not do becayse I was so breathless).    I am now seeing a Pulminary Hypertension specialist who is also a cardiologist who thinks it is because of scar issue in my lung from the original clot.  I would advise you to be sure that this is not also  your situation.  A cat scan, or a LUng Scan,  MRI  would tell you more about that.

       

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