PE'S

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Hi

I was admitted to hospital mid November with large PE in both 

lungs and a lung infection, was discharged after 2 weeks and then 

readmitted 6 days later with Chest Infection/Pneumonia and was in 

for just over a week.

The hospital have no idea why I got these blood clots and was only 

diagnosed after a blood test and CT scan.

I have been at home now for just under 7 weeks and am so paranoid 

and aware of everything in my body.

I am on Apaxibam 5mg twice a day, betablockers, 

antibiotics (3rd time since I have been discharged)

Was on Raparimil 2.5mg twice a day but this got 

changed 2 days ago when I went to the hospital as cough was 

driving me mad and hurting, also had the feelings of a really 

heavy /pronounced heartbeat, the doctor has now put me on 

Irbesartan 75mg once a day.

I potter around my home and I have tries going out (not far just 

to end of road) and have occasionally gone a little dizzy and not 

feeling great.When I try and go for a little walk, I seem to get feelings of a panic attack and just want to get back home.  I wonder if  I will ever get back to normal.

I went back to the hospital for another Echocardiograme the other day as the cardiologist wanted me to have one 6 weeks after discharge. Whilst I was in hospital I had an echocardiograme and a heart MRI test and it showed that the left side was only working at 15%.  The result from the latest one is that it is now working normally (which is great news), however the right side is still under strain due to the clots.

I know that it has only been 6 weeks and have been told that it 

will take months, but I am just worried that I seem to be feeling 

worse some days than when I came out of hospital.

I get the feelings of chest heaviness at times, the feelings of rapid heartbeats and sometimes my breathing feels weird.  My cardiologist has tried to reassure me but I do get so worried that there is something wrong again.  I have an appointment with the respiratory in a few weeks.

Just wonder if anyone else has had similar experiences.

Thanks for listening to my moan smile

Debby

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10 Replies

  • Posted

    Im 12 weeks post relatively small pes in both lungs. I had the same panic problems. I had a mild strain on my heart but my cardiologist assured me i was fine. I still have tightness and a little pain every now and then in my chest. I also have pvc's. So even sometimes i still panic. Im on an anti anxiety medicine that helps a lot but i also have an anxiety disorder. Ask about an anti anxiety med. Try to relax. I know its hard but it will get better.

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    • Posted

      Hi Samantha

      Thanks for your reply.  I know that I get really anxious and that just makes things worse.  I think I will ask about anxiety meds to see if that helps.

      I am so glad that I found this forum as you sometimes feel that you are the only one going through this.

      I am glad that you are on the road to recovery.

      Debby

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  • Posted

    Hi Debby,

    That's a very good summary of a PE incident...so you are holding it together better than you think!

    Information on what happens post PEs is pretty scarce, as many have found. What I can tell you is that most of your issues (anxiety, feelings of chest heaviness, heavy/rapid heartbeats, shortness of breath/breathing feeling odd etc.) are pretty common.  You are early days and multiple PEs is a big injury to the body, so needs time to heal.....and it will take time. I am a year further on than you and am still improving. The good news is that on a good day, I feel better than I did before the PEs were diagnosed !

    It's a real pity that we can't interact as a group. I am sure going for a walk with someone who has recovered would make it a lot less daunting...and they would understand how you were feeling. 

    It will get better (you will get better), just take time to let your body heal. I was told exercise was good - gentle like a walk, not full on gym. Little and often rather than all in one go.

    Hope that helps.

    Peter

    p.s. ask anything you like on here and I am sure someone will respond. We all went through the lack of info thing.....

    P

     

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    • Posted

      Hi Peter

      Thank you for your response, it is so reasurring to know that these are common symptoms.  You feel sometimes that you are the only person going through something like this, and like you say information is really scarce to come by.

      This illness has really knocked my confidence in my abilities and in my body, I used to love being out walking, gym etc but now at times I dont even want to leave the house. This has knocked me for six.

      I totally agree that if we could interact as a group than that would be so helpful in building confidences and being able to share experiences.

      I am glad that you are feeling so much better.

      Debby

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  • Posted

    After reading this site and my own personal experience what you are feeling is normal. I hate going anywhere by myself because I want to make sure someone knows where I am in case I need help.

    I have had reasons to see Drs for check ups because they are trying to find out what caused my PE so I ask questions every time. Talking to my cardiologist made me angry the other day because I felt he didn't take my fears seriously.

    Take each day one at a time. Do what you can but give yourself permission to sit down and take a brea

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    • Posted

      Hi Windy8000

      It is good to be able to speak with other people that have been or going through the same experiences.

      I can be sitting at home when the feelings come on, heart starts racing and breathing feels funny, chest heaviness and then I feel out of sorts for ages.

      I feel at times that I just don't want to go out, my legs want to but the heart and lungs can't.  I get so paniky and anxious if I go too far from the car or away from my familar surroundings.

      Debby

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    • Posted

      My bf has gone for a few days to help a friend so I went shopping and running around with my sister and I am so out of breath and my lung hurts so bad I'm going to have to use my special medication inhaler tonight. I really over did it. But I had a good time.

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    • Posted

      Hi Windy8000

      I am so glad that you ahd a good time with your sister, well done.

      This morning I was in bed reading when my breathing went all funny and now I feel terrible, chest heaviness, coughing, a little wobbly and just out of sorts.

      I am going to get an aoppointment with GP when they open.

      Debby

       

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