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Significant Pulmonary Embolism

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charles43288
charles43288

Hi I have not used a forum before but need some reassurance that all is going well. I have had a dry cough for nearly 3 months which seemed to appear after a long flight to New Orleans back in March. I did not seek medical advice and then flew to West Africa back in May. During my time in West Africa I felt unwell, my cough was bad and I noticed I was short of breath on occasions. During my return I very nearly collapsed in CDG airport only just making it to my flight to Aberdeen. ON arriving home my wife took me straight to my GPs and I ended up in Aberdeen High dependency Unit. I was diagnosed with a significant PE and a clot in my left ventricle. I also had total renal failure and significant liver failure. I was slowly nursed back to health but had great difficulty with anti coagulants which just did not work (been on dabigatran for 2 years). Eventually stabilised on Warfarin and now have my INR under control. During my time in ARI my right hand went completely white and one of my right arm pulses was lost. My legs are like elephants although the swelling is now subsiding. Right arm better now although two fingers are numb.

My question is; the clot in my heart has gone and I am able to take gentle exercise without being too breathless. Is this together with my reduced leg swelling, a sign that the PE is reducing. What about the cough which is not improving. I would be grateful for any advice.

Charlie

0 likes, 4 replies

4 Replies

  • Sway
    Sway charles43288

    Posted

    Everyone recovers differently and the amount of time. But it sounds like your pe did a number on you. I'm glad your here today to share with us. It took me about 8 months to fully recovery. I was on thinners for 6 months and have been off since may 2017. I've read story's of people taking a year or two to recover. Without having another scan you won't know if the clot has dissolved. The thinners don't make the clot go away but makes it easier for your blood to flow and the clot will dissolve back into your blood stream from my understanding.

  • peter54321
    peter54321 charles43288

    Posted

    Hi Charlie,

    As Sway said - your PEs sounded quite dramatic, so you probably got hit harder than most.  

    Given the severity, I expect recovery will take a long time.  The upside of which could be that you may not have finished recovering and will improve more.

    I had my PEs diagnosed in August 2015 and it took me at least a couple of years to recover.  The main thing I am left with is inflammation in the lungs, which creates excessive mucus. I am guessing this may not be disimilar to you cough?  I find it is worse when pollen is high and if I encounter pollutants (petrol, chemicals etc.).  

    In fairness, due to the number of clots, I was warned that this may happen by my pulmonologist and considering how poorly I was after the PEs, I am not unhappy with where I am.

    I am no medic, but would have thought the reduction in leg swelling was a sign of recovery from the heart strain.

    Lastly - I also struggled with the anticoagulants. I was put on Rivaroxiban and did not get on with it at all. Now on warfarin and stable.

    Hope that helps and hope you keep on getting better and better.

    Peter

    p.s. Sway - I don’t think anticoagulants make your blood physically thinner, thereby flowing differently, they just alter clotting factors. Whatever way they work, glad they are around!

    P

  • charles43288
    charles43288

    Posted

    Hi Peter and Sway,

    Thank you for your replies and although you have affirmed what I have been told by my cardiologist. It is very reassuring to hear from folk who have actually been through what I am presently experiencing. There is no doubt that I have been in a surreal world for a few weeks having been fighting fit most of my life.

    Good news is that yesterday I went for a walk with my wife and managed over a mile without breathlessness. My legs are definitely reducing in size/swelling. I suppose what I must adjust to is that this is a slow process and I must not try to run before walking.

    Than you again both you have re-assured me.

    Charlie

  • merlincoffee
    merlincoffee charles43288

    Posted

    Yes, the fact that you are home after one bad enough that cause organ failure means much has dissolved. You probably got several injections of about 3 mil each in the belly which were clot busters.

    Some of the pieces of clot ended up in the arteries on the under side of the lungs. The coughing may go on for a year or possibly even 2, but in time will get better as long as you force yourself to move. I set my phone to alert me at the hour to stand and move. This is a slow recovery as I am at 2 years and cannot walk very far yet.

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