Pulmonary embolism?

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8 weeks after an operation I started to experience shortness of breath whenever i tried to do anything. The GP sent me to A and E. My blood oxygen was anything from 92 to78 and after an x-ray, scan and ECG were all clear my levels were staying around 79 to 81. I was then taken to the ICCU for 3 days. I didn't feel ill but the doctors were telling me I was very ill. They stabilised me and sent me to the ward still on oxygen. I was told that the symptoms showed a PE but all the tests were clear. I was treated for PE and things started to clear after 12 days in hospital I was sent home on blood thinners and told I would need to go to the respiratory clinic for check ups. Now I'm feeling vulnerable other than the shortness of breath I had no other symptoms that I knew of. I'm scared it will come back. I'm not sleeping very well.

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  • Posted

    Holy crow!  12 days in the hospital?   when you say they did "scans"   do you mean a CT scan with contrast?  

    This is a true illustration on how doctors do things so totally differently. I had multiple clots in my legs, asked them to do a CT scan with contrast on my lungs. They found multiple clots in my lungs and SENT ME HOME.  

    Now, that being said, my clot locations might have been "safer" than yours, which might be why you were kept in the hospital for so long,  and maybe I had less heart damage than you.  I wonder what all they found to justify keeping you in the hospital and on oxygen for so long.  Frankly, it would be helpful for the rest of us to know just what we should be worried about and what we SHOULDN'T be worried about.   Like....should I be worried that my doctors DIDN'T keep me at least overnight? 

    I can certainly understand why you wouldn't be sleeping well.  Oddly, I sleep REALLY well, plus I need a 2 hour nap during the day. Doc told me it was because my body was trying to heal.  And luckily, I'm retired and have the luxury of naps. 

    Good luck.  At least you're diagnosed and being monitored. Those are GOOD THINGS

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    • Posted

      They couldn't send me home because my blood oxygen reading was so low. Even when I was on 75% oxygen the readings didn't go up. They wouldn't let me home until I was 24 hours without oxygen. I have an oxygen reader at home and have to use it to make sure I'm breathing properly. I still drop to 88 when I'm tired. But deep breathing can now bring it back to around 94.

      Your right we need more information, it's our bodies we need to know what to expect and how to deal with the lows . It's only been a couple of days but if I still feel like this next week I will see the doctor and ask for help.

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  • Posted

    Hey Clare :-)

       I don't think there's many of us out there who don't feel fear after a blood clot... it's a scary thing to go through any life threatening event.

       Mine were discovered after I started getting chest pains but I never had symptoms of a DVT... Apparently many show no symptoms.

       I have had two episodes of clots now so am on Apixaban for life.

       My haematologist told me there is a less than 1% chance of a further clot whilst on blood thinners. Try to feel reassurred that your medication is your best friend right now :-)

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    • Posted

      Hi Catherine, I've calmed down a little after talking to my doctor. Sleeping is still off but I'm confident it will get better. If I try to push myself to do things like walking too far or standing too long my oxygen level still drops, sometimes below 80. I've been advised not to push too much but if I do to make sure I get the oxygen level back up and resting for as long as is needed! Whatever that means. I am doing better though I'm staying more positive most of the time! My husband is being fantastic.

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    • Posted

      hi what kind of aftercare did you get ? because i have not had any apart from seeing consultant 8 weeks after my PE i also had no symptoms just dizzines and chest pain before very scary it was a substantial clot on my right lung and im frightened i may get another. i am back at work trying to get back to normal but so tired
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    • Posted

      Hi Christie, I haven't had time to have after care, I saw my own doctor who talked me through a couple of my worries, namely not keeping and crying all the time. He told me it was normal! I'm on just at the moment and don't get back till the 12th Aug. I have an appointment at the respiratory vascular something department on the 19th to see where the oxygen is going when I breath. Then i have an appointment with the respiratory clinic early September. My own doctor wants to see me when I get home about the sleeping! The tearfulness has just about gone, I'm feeling g more like myself.

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  • Posted

    Strange that they found all you tests clear the PEs usually show up on CT

    I have been hospitalized 3 times for PES 10 days the first 2 days the second (a year later) and 5 the last

    They have never found clots anywhere but my lungs and heart

    I seem to sleep a lot also

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    • Posted

      Your right Nancy it was very unusual, doctors just kept coming and doing more and more head scratching. They think that it was multiple small clots, too small to be picked up by the scans but we're filling the capillaries making them incapable of working properly. I was warned that I may never know the cause of it. But I have tests on 19th aug so I'm hoping they learn some more. If I don't know what caused it how can I stop it from happening again? It's scary!

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  • Posted

    From everything I've read or heard, being tired is very common.  I can sleep 8 or 9 hours a night and because I have the luxury of being retired, I can take a 2 1/2 to 3 hour nap in the afternoon. I've been diagnosed since May but in hindsight have had the lung clots since before last Christmas.  I'm lucky to be here still -- aren't we all?  

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    • Posted

      Hi Susan like you I think I had the problem for a while but with waiting for an operation and having my symptoms getting worse , I didn't notice a new problem. I'm fed up with 2016!

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