Pulmonary Embolism and the Future

Hi,

This year in June I was diagnosed with a large bilateral saddle PE. I'm working on my recovery which has been hard and isolating. I wanted to know what the future has had in store for others with PEs - how has your recovery been? How has it impacted things like pregnancy / getting through winters / work / social ?

Many thanks

Louise

5 Replies

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  • I had a PE that took out 2/3rds of my right lung and I do fine. But how things will be for you is dependent on recovery and how much lung capacity you have lost. Im sorry you are going thru this. Stay strong and expect the best. Always assume that this wil pass and u will move on with life. I think mentality is at least half the fight!

  • I agree with SoulRebel-APS,

    ''Stay strong and expect the best. Always assume that this will pass and u will move on with life. I think mentality is at least half the fight!''

    I had a PE last year and I know how low you must feel at times. Talk and share about how you feel we have all been there. I was on anticoagulants for six months and anxiety was an issue as I didn’t like to be very far from my local hospital. But now my life is back to normal and I’ve been on holiday and flown a couple of times and being positive about the future. The PE is always in the back of my mind as it is a life changing event, but it happened. It will take time for you to feel better as your mind and body has been through such trauma but it will get better.

    Richard

  • Hi Louise, hope you are ok today.I can only speak for myself. I was incredibly tired and got out of breath easily. I still isolate myself and have always battled with depression. I struggle to work out if it is the depression or the effects of the p.e as i become wiped out for days and many of the symptoms can overlap e.g. the social avoidance

    It is common for depression to set in and go hand in hand with the illness. I found Warfarin and attending the clinic a real depressive ordeal. I couldn't stabilise on it due to my lifestytle

    Colin

  • Getting over PEs is hard, and there's no support it seems in the NHS other then the initial diagnosis unless you see a haematologist . Warfarin clinics are a joke at best and if you can see a proper haematologist that's the way forward from the mire of uncertainty. There are good haematologists at Royal Free , not to be confused with the warfarin clinics . They are a separate clinic . That would also help rule out any genetic blood disorders and predisposions to clotting. They would also make sure you got any tests needed. There are other drugs apart from Warfarin the haematologist can prescribe too. Makes life easier and less stressful . Personally I think Warfarin clinics are a great cause of stress. Listen to your body and intuition too. Go back to hospital if you ever think things aren't what they should be , but be prepared to stand your ground and ask for tests eliminating problems if you think you have . Good luck .

  • Hello , I've had my second Pe & im finding it harder this time , I'm very tired all the time & Ive had huge anxiety , I'm trying to be positive but hand a lost of side affects with the medication , I had clexene last time & I was fine.

    Hope your starting to feel a lot better xx