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Anticoagulation UK
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Four years on and still feeling 20 years older

Hi, I had my PE four years ago, and was admitted to hospital on the 18/02/15. I had been feeling unwell several months prior with pains in the back/shortness of breath, but put it down to ongoing back issues and the affects of smoking 18-20 cigarettes a day. I was working full-time and travelling up to four hours a day, so just thought I was a bit run down. By the time I got to hospital and had a formal diagnosis of clots, I was also told my lungs were scared from previous clots. I also had fluid on the lungs, partial collapse of both lungs, a nasty infection and severe asthma. I was in hospital two and a half weeks and also for a week in March.

My life changed completely after this. I suddenly aged 20 years over night. I broke my back in 2012 stumbling down a kerb and had spinal fusion surgery done in 2013. During this time I continued to work - drugged up on pain meds, but I worked. I was back at work 12 weeks after my surgery and kept going with other things at home with the family right up until February 2015. Since having the PE I have never returned to work.

Also, since that time I have found myself waiting to wake up one day and feel like my old self - four years of waiting for my stamina to come back. I have developed other health problems in the four years since I had my PE which I'm sure have contributed to my general lethargy, but this lack of stamina is what really gets me down. Everything takes so much more effort and so by the end of the day I feel exhausted. When will my stamina come back?

Also living with the fear of another PE - of not being able to breathe again - is insidious and terrifying. I held a wet flannel to my face and accidentally breathed in at the same time and felt panic start to rise. I kissed my husband the other day and held my breath when doing so and felt the panic start to rise. I feel myself struggle to breath when sleeping and wake up in a panic. Going to the dentist and struggling to breath makes me panic. The pain around my rib cage and at the bottom of my right lung is a constant daily ache and reminder.

Will I ever be myself again? After four years of waiting, I have resigned myself to never feeling like myself again and it just makes me sad. I'm 52 years old but feel 20 years older.

16 Replies
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I had an acute DVT and 2 mths on I feel knackered. Down and depressed finding it hard to work. 26 yrs ago when I had one not so severe I got over it... this time I feel like my life is over I still feel it in my groin. Slightly tight underwear aggrevates it... I am 56 it prob has a lot to do with age. Although I hate admitting it. I am finding it scares employers....

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the trouble is, as we get older, we don't bounce back as quickly as we used. Much as I hate to admit it....

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I do so know what you mean. I expect my lungs were damaged due to a 25-year 40-a-day habit, but on the other hand, I gave up in 1994 so now have not smoked for (just) longer than I did smoke. But I have been having random rib pains for the last 18 hours or so and of course you panic, thinking is it another clot? And I hate, hate, hate the lack of stamina more than anything. I'd quite like to go out this afternoon, as I'm alone in the flat today, but not sure I can be bothered....

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I too am alone in my flat and feel that nautious and exhausted I wont be going out. I never smoked in my life, eat healthily, keep fit and active, run up my 39 steps to my flat normally. Now I have to take it real slow or I feel sick and dizzy. I think its the menapause and a sit down desk job that caused this.

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We have to do what we can, not what we can't. I'm particularly exhausted just now (a bereavement, and you know how tiring grief can be), and have slept all afternoon instead of going out for the nice, healthy walk I'd intended! Ah well....

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sorry to hear about your bereavement

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Hope you get sorted, sorry for your loss

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Thank you. We will get used to missing him, I expect.... one day!

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I cannot offer any advice about the exhaustion as two years on I feel exactly the same. However, it might be a good idea to ask to be referred to a respiratory physiotherapist to help you with your breathing. When we have a condition like a PE our breathing patterns alter to compensate for it and sometimes it doesn't return to normal afterwards. A respiratory physiotherapist will be able to check that you are breathing correctly and give you exercises that should help. I felt breathless like I was drowning after my PE, I could never get what felt like a full lungful of air, couldn’t drink a glass of water without panicking etc and the breathing exercises have completely sorted that out for me. Hope this helps and I do completely understand how life has changed for you.

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And unfortunately you wont feel yourself again.Nothing prepares you for what could be a life threatening situation,as mine was,and many others.

Much of it is in the mind,and panicking,like probably most of us have done, sets off the physical side of things.I've said it before in a post,patience is a great healer,and believe you me,I wasn't born with any,lol....but changing your way of life cope with any long term illness is tough,but it can be done.

What I can see is support from your family and the ones closest to you can be a big help,and I don't mean pampering you.By just trying to do things normally and not thinking you,''can't'' do something can help you conquer the mind games your illness has brought upon you.

I'm a big believer in there is no such thing as ''Can't Do'',although physically I'm afraid I'll not be trying Everest this year,LOL.

Don't forget...you think OLD....you'll feel OLD.

PS.............I live in NE Derbyshire and if there are any members off here who live close by and would like to get together for a cuppa and a chat about their experiences and life in general,only we understand....let me know..if not on here,you can reach me at

wishboneash09@gmail.com

M

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I’ve had two DVT/PEs myself, three years apart. My most recent one was a year ago and I was struggling with stamina. Since I felt knackered the moment I went on Apixaban (was fine with warfarin the time before) I had always suspected it could be related to the drugs rather than clot. Recently I had some private blood tests done by Thriva and I found out I have very low vitamin D and vitamin B9 (folate) levels. I’ve been on good supplements since then and I’m starting yo feel stronger already. Managed to walk up a hill the other week and I was chuffed. Maybe worth asking your GP to check folate and iron because you may well be anaemic.

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Exactly the same for me on apixaban... folate and Vitamin d. I had to swap to another anticoagulant in the end as I was so exhausted all the time.

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That’s interesting. Most people comment they are fine on it so I thought it was just me for a long time! 🙂

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I totally agree at 64, my Daughter keeps saying what can I do! Nothing is the answer! I try to walk out but get so so tired but should walk as I’ve got a very bad back and have been told to get more exercise with I find very difficult. Hope you feel better soon.

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Yes, MazzyB, I'm not getting any better either and like you, need to walk, for at least some strengthening exercise. My fatigue has prevented me getting back in touch but still intend to.

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Really hope you get sorted.

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