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Newly diagnosed with unknown cause of pulmonary embolism

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sue28123
sue28123

Just got out of the hospital with a PE. Been told will be on Coumadin at least a year. Heart looked ok. Clots only in right lung. Doctor's couldn't find where clots came from. If it wasn't the constant being short of breath, I'd feel ok. So, when is it ok to go back to work? When does the short of breathless ease. I have my first appointment,tomorrow, for Coumadin management. I'm 62 years old and want to remain working till I reach retirement age. A lot of questions!

1 like, 8 replies

8 Replies

  • Tnisha00
    Tnisha00 sue28123

    Posted

    Hi im 25 years of age, Thank God they caught mine when they did, I was only out of work for maybe 2 weeks. By that time my breathing and chest pains were much better, I'm still on Eliquis for 3 months, then hopefully I'll be able to get off. From reading other discussion/ replys! I thought I would be out of work for a while. But I guess it depends on the person, bc a lot of ppl where out for months or they went Part time. I did as much walking and moving around the house as I could tolerate, some stuff was tough but I managed. I hope all is well for you, 

    • sue28123
      sue28123 Tnisha00

      Posted

      Thank you! I get winded just walking in my apartment. I hate it when some family members baby me. I want to do as much as I can tolerate. Plus work, for me, is part social and I'm already missing all the interactions.

  • Tnisha00
    Tnisha00 sue28123

    Posted

    Yes I was the same way. From the bed to the bath room I was SOB. Even laying down I was SOB, or tryna get comfortable in bed. I didn't think it would ever end, but with time it did. And I owe it all to God, I am so happy and blessed, I just pray it doesn't reoccur. Mine came about from some contraceptive pills I was taking. What kind of work do you do?

    • sue28123
      sue28123 Tnisha00

      Posted

      I'm a secretary in one of our local hospitals. I can be sitting a couple hours, to zipping to another part of our 45 inpatient unit. Just depending on what's happening. Probably more sitting, but my job requires being able to rapidly move if needed.

    • Tnisha00
      Tnisha00 sue28123

      Posted

      Oh yea, you know your body best, and that’s a lot of zapping, I wouldn’t attempt to go until I feel like I’m up too it, don’t rush it, it may take a while for recovery it may not. But I wouldn’t expect to return to work right away. Take care of yourself. Don’t over do it. I’ll be praying for you.
  • canadagal
    canadagal sue28123

    Posted

    I also had PEs , hundreds, in both lungs, also unknown as to where they came from and my hematologist told me I had to stay on for life.  I had been undiagnosed for 5 months and had pulmonary hypertension as well as some right heart issues.  It was while I was on Long Term Disability, I was 63 at the time, and so I just went from disability to retirement.  Not really what I had wanted but I had no choice.  My resperologist told me it would take at least 6-9 months for the clots to be absorbed by my body.  All the best I know what you are going thru.  And I will add fight for what you think is right.  I fought to have oxygen in my home on discharge from hospital, they told me no way.  I said watch me, and I got it.  I just couldn't breathe but the doctors and nurses wouldn't believe me.  Very frustrating.

    • Tnisha00
      Tnisha00 canadagal

      Posted

      It’s frustrating that they think you can’t breathe or can’t do other things when you tell them. I’m sure they can see that you were having a time breathing when moving around 
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