Returning to work

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I am 54 and just been diagnosed with bilateral PE. I cannot find information on how to go forward with my life. How long will I be off work, anf many other questions. Please help

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  • Posted

    Hello.

    Really sorry to hear about your problems. Last October I collapsed with a Pulmonary Embolism. It was awful. They said there were and may e still are loads of tiny clots. They didn't expect me to live. I'm 32 and this is my second PE. I had one at 16. I suffer from Ulcerative Colitis and they think this is the cause.

    Its very frustrating as there isn't much help out there. Even the benefits system doesn't help. I get ESA but its not much.

    The thing I would suggest Is to not rush back to doing everything and get some help from family if possible. I also have a young baby and a partner but with all the appointments from my Warfarin etc its been terrible...

    I was made redundant a year ago so fortunately I don't have to worry about work. I was a Manager which I know I wont be able to go back to for a long time.

    But I will have to go back in the next few months.

    Its a slow depressing process which ages you mentally and physically. Go back into work slowly possibly part time. That's what I'm going to do.i cant handle much walking at the moment or drive far on my own. I get tired and confused and its not far because there is no true help or right or wrong's.

    Follow how you feel physically and do baby steps. I've found that's the only way forward.

    Hope this helps.

    Take care.

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  • Posted

    Thankyou for telling your story, I have only just got out of hospital, after 2 weeks and in general panic mode. I am a teacher and know I am not ready for work
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  • Posted

    Hi there

    I was diagnosed with a bilateral PE at the start of January following a couple of long haul flights.  Like you I have found it very, very difficult to get any advice re what to expect and how to cope in the short term/long term.   Fortunately I am retired so don't have to worry about a return to work but I would like a return to life at some stage!!  At the moment my life seems to revolve around INR blood tests, going  for other tests and waiting for appointments.  All the while coping with odd aches and pains which can be very worrying.  I wish I could offer some constructive advice...instead all I can offer is a sense of solidarity and to let you know that you are not alone with your feelings of panic and confusion.  As claire-mar29574 says - take things slowly, listen to your body and don't try and rush things.  Also, be prepared to make a nuisance of yourself by asking questions of anyone and everyone you come across, (e.g. GP, pharmacist, respiratory consultant, heart people, warfarin clinic people) as very little info seems to be volunteered to the patient!  I'm afraid you really have to be assertive and push for any answers at all...

    With very best wishes....

     

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  • Posted

    Hi I'm a teacher too!! I had a bi-laterall PE before Christmas, I had 8 days off before returning to work, I did 2 hours a day for 2 weeks and then had Christmas off and back to work full time. I like you have little advice about returning to work. In retrospect I would have had at 3 or 4 weeks off before even thinking about work. Then its how you feel really. I was very short of beath most of the time and its taken me about 8 weeks to feel better. So I would say have as much rest as you can and don't rush back. Then talk to your school about a phased return for the next month. Hope this helps.
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  • Posted

    Hi acrdpt- so sorry tio hear of your exprience which sounds all too familiar. i ha bi-lateral PE's way back in 2006, but am still suffering form long lasting effects. I am an LSA and was off work for 6 months before a phased return, which wore me out and wore me down. Despite all the medical people I've every spoken to and  everything I've read to the contrary- there are, for many people long lasting effects. Ever since the PE I have had repeated chest infections and horrendous pain in the same place as the initial PE pain; just last week, after all these years of KNOWING something wasn't righgt, I was finally told by a Resp Consultant that there are often long trem effects, and the pain I get is from pleurisy, which is a not uncommon partner to a chest infection afte a PE. I agree with Allexie- mke a nuisance of yourself and keep on doing so until you get some answers. I think its appalling that an illness that can kill you (as it nearly did me and countless others) doesn't have the recognition it should have. My theory is that because it's a blood condition that affects the lungs, it falls between haematology and respiratory and therefore gets lost in the middle, and medical professionals can;'t seem to agree on how best to deal with it. I would only say that you know your body, and you know when something isn't right. Take your time, see occupational health, I saw a counsellor, and would recommend that. it does seem that there is no help available and we have to make our own on forums like this- shouldn't have to but glad it's here.
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  • Posted

    Thank you, its great knowing their are others to support you when its all,so new and frightening
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  • Posted

    Hi

    Sorry to hear you too are suffering. I was diagnosed on 16 Jan with bilateral PE. This too is my 2nd episode- I had DVT & multiple PE in 2003.

    I haven't had a huge amount of offered advice, but when I've as I've been given help.

    I had an op on my foot on 10 Dec which made immobile for 8 weeks. As I'd had previous DVT & PE they gave 3 weeks worth of heparin rather than 2, but sadly during weeke 5 I noti I was short of breath and had palpitations.

    We're all different so might be worth checking with doctors but I was told no exercise for 3 months.

    I was due back to work at the beginning of Feb after foot op but doctor signed me off for 3 weeks and as I'm still getting out of breath I've been signed off again, this time until the end of March. I don't think I'll nee all of that as feels a long time but will see how I get on.

    I've b told that if this was my first episode I co still give blood but as its my second I won't be able to give blood again.

    I'm 46 and work in an office so not an active job but can be stressful which is why my doctor aired on side of caution.

    Sorry I too can't off much help but hopefully it helps by knowing you're not on your own. ☺️

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