PE just diagnosed

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Hi!

Im Krista from FInland and Im just 24 years old. Doctors diagnosed me PE in both of my lungs a few days ago. I spent only one night in ER and then they sent me home with Clexane two times per day for the first month. After that maybe some other medication, dont know yet.

I feel quite alone and cant find experiences of this condition on my own language. Im only gonna be off to work this week and it feels kind of weird after this serious disease.

My only symptoms were the feeling of short breath and had a little chestpain while walking my dogs. They treated this as asthma for two weeks, until one doc had idea of PE.

My clots were (or still are) quite small, but I have them on my both lungs. How long you think it's gonna take to recover? Yeah, no one can say for sure but I would like to get some experiences.

And how has PE changed your life or life plans? I dont smoke or drink, so cant even quit them.

And sorry for the language, not a native speaker here :D

Krista

 

1 like, 13 replies

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13 Replies

  • Posted

    Hi Krista. It is really scary when you leave hospital. I was diagnosed in August. Doctor told me could be 6 months to a year to recover. Take each day slowly. I have found my body tells me when to stop. Some people are lucky and recover sooner. I am 64. You are young. Good luck. x
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  • Posted

    Hi Krista, yes it's scary, I am sorry you seem to be going through this alone. Here you are NOT alone. We have ALL felt what you are feeling.

    I have been treated for asthma too. One day the shortness of breath just got to bad and so I went to the ER if it hadn't been for a great Drs assistant ordering a cat scan they would have just given me a brething treatment and sent me home. They saw my huge PE in my right lung and started me on my blood thinners.

    Now I know we can expect good days and bad days we can expect days where we just want to curl up in a ball in bed and days where walking slowly we can make it the whole day normally.

    You have several friends here. You never have a dumb question, and any time something good happens share it we need hope too🙂

    Everything you are feeling is normal and will get better in its own time. Don't rush it. Trying to stay calm will help the shortness of breath. I found bending at the knees and not just bending over helps me most.

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  • Posted

    Hi Krista

    It is scary but this forum has been so helpful and you are among friends.

    It varies on how long it can take to recover as everybody is different, just listen to your body.

    I was diagnosed in November with large PE's in both lungs, I try and do a little each day and listen to my body. 

    Take it slow. it will get easier and ask anything you want to.

    Take care

    Debby x

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  • Posted

    Hello , I was diagnosed in July 2015 , how long i had , had the mass of blood clots on my lungs i do not know as i was breathless weeks leading up to then , my own GP didn't notice it but when i was still not feeling great i went back to my surgery an was given an emergency appointment with a locum GP early afternoon by late afternoon i was in A&E as the locum ( he is what they call in the UK  a doctor that comes to the surgery when a regular GP takes a holiday - basically a locum GP covers a GP's holiday in a surgery ) was concerned , CT Scan revealed blood clots , further CT Scan couldn't locate where they came from an because of that when i saw the consultant later that year he discharged me to my GP telling me that it would be up to my GP an me if we decided the following July ( 2016 ) whether i would come off blood thinners or continue with them , he said that if i came off them , then the blood clots would very likely return , last July my GP an i talked about it an we decided that i would have to stay on the medication , i am on my 3rd type of blood thinner as Warfarin - the most common one wasn't working for me as my readings were all over the place , 2nd blood thinner made me sweat , clammy so was put on a 3rd blood thinner , you tend to adapt to how the blood clots have affected your body , we are all different , i did get frustrated at how tired i got just doing a easy task like getting up to close the curtains but you just take a day at a time , i am 53 an i had been very active in my younger days but i got arthritis in both of my knees in my mid 40's so i know even before i got those PE's i was limited to what i could do , it can be alarming especially if like me you don't smoke , etc but you will adjust to it so please don't be worried an take care xx

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    • Posted

      Hi Maria. Sorry to hear you have arthritis in your knees that must be very painful. How is your breathing and do you get lower back pains at all from the PE. I was diagnosed last August. Thanks for telling us your experience it helps us all. x
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    • Posted

      I think the wear 'n' tear on my knees was down to me being so active up until the last 10 years ,i used to cycle miles an miles likewise walk for miles ( i dog sit for a family friend , still do but can no longer walk the girls but they are much older now so are not bothered , i stay with them when their owner goes to places like Jersey , France ) , i also did hotel work where i would had been going up an down stairs likewise was a volunteer in a charity shops - over a few floors , then prior to that i did 2 x 5 years as a Nanny so i was always out pushing the buggy for miles as i liked to take the babies , toddlers , etc outdoors ( i live in Weymouth - seaside town ) , so arthritis to be honest was not a surprise , i take Tramadol prescribed pain killers an sometimes it can be uncomfy but i am fortunate in that i live alone with just a cat to look after so i do spend alot of time in bed with hot water bottles keeping my limbs warm . I have never really experience lower back pain , my breathiing though is not great - last few months an i had blood tests an was put on iron tablets which my GP told me will take a while to work , had ECG - fine which they usually were , had Echo-cardiogram a few weeks ago - ultra sound round the heart - fine which i thought it would be , i do struggle to get my breath when lying down to sleep , wasn't too bad prior to Autumn hence why i knew there was a problem before Christmas , i rarely go to my GP unless i was unwell an i knew there was something wrong back in Summer 2015 - just didn't feel good but while in A&E they also found that i had a chest infection, kidney infection which explained alot , this is why now i know something is not right an my GP saw that for himself Tuesday when i saw him - he saw me walk from waiting room to his room an i said "i know something is not right" an he said he could see that just by me walking that short distance , got more iron tablets to carry on with - hopeing they will kick in soon . I usually just shrug off ailments , etc but breathing , etc problems then i will make sure i go to the doctor . I should think you will see your consultant in August - year after your initial diagnosis ? , i don't know about you but what worried me more then the blood clots was that the consultant said to me "we will put you on blood thinners but you will be at risk of mini strokes" , the mini strokes did worry me living on my own but i have my mobile next to my bed all the time just in case of an emergency , also something else i was told , warned about was internal bleeding an to be very careful of external bleeding , I just tell fellow sufferers to take small steps , gradually build up to just what your body will allow , don't overdo it as it is not worth it , some of us will recover with no problem others like myself will be on blood thinners for life , i guess now i have got used to it despite being told recently that the blood clots may have returned ( someone from Cardiology told me that ) so i am keeping an eye on my breathing , at the moment like i said it is not good an i do struggle sometimes to breath in then out but hoepfully the iron tablets will kick in , It is hard sometimes as i suffer from depression which is severe at the moment an anxiety , take care an remember just do what you can do xx

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    • Posted

      Hi Maria. That was really helpful. I can relate to your circumstances. I too have always been active. Worked in retail all my life so on my feet 9-5. Walk for hobby. South Downs Way etc. Good to be able to hear from others experience,s so glad I found this forum. Keep smiling. x
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  • Posted

    Hello,

    I am new to this site. It's so comforting to read the stories of others who are experiencing some of the same issues. I had surgery on Feb. 2, 2017. Was supposed to be same day but ended up spending two days in the hospital for obaervation. After being released from the hospital, upon KY second night home I was experiencing shortness of breath and chest pains. I was very alarming. I wasn't sure if I was having a heart attack or panic attack. Had never had neither. Thought maybe it could've been my hormones from where I had just had female surgery. Anyway, long story short, after contactingredients my OBGYN, she suggested that I go to the ER bc of the chest pains. EKG was normal, chest x-Ray was normal but a Chest Scan showed a tiny flit in my right lung. I was admitted and put on a Heprin drip, told not to get out of bed, until the next day when they let me go to the bathroom. This was a very scary experience. !! One doctor thought the clot looked old but all my testing to see if I had any hereditary disorders or susceptible to clots came back negative. Aftet 3 more days in the hospital I came home...working to say the least. I am a Christian and I know my trust should be in God and not worring. I also had an echo done and they told me that my RSVP number was 52.6, in which they were concerned about. Just 6 years ago it was only 19. They said I could have Pulmonary Hypertension. Honing to repeat Echo and chest x-Ray in 7 weeks. However, I know it's only been a month but they tell me to just try to get back to my normal life. I am still having chest pains on both sides at times, without even doing anything. Also pain in my upper back. Anyone have anything similar going on..is this normal. Thank you all for sharing your stories, the ones I have read our helpful

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  • Posted

    Hi Krista,

    Please don't apologise, your language skills are brilliant. Sorry to hear that

    you have had this problem and at such a young age!

    A month ago I too suffered multiple clots but only in one lung, I was only

    Overnight and discharged on a drug called Apixaban. I was recovering

    quite well until last week when I was admitted with a lung infection, I'm still

    in hospital at the moment but doing ok.

    I was very depressed initially but have tried organising some things to look

    forward to and although it was a shock it just takes a bit of time to accept

    this has happend. Think happy thoughts, take one day at a time. I wish you

    well with your recovery. Take care. This is a great place to get advice and

    support.

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    • Posted

      Hi Janny

      I hope you are feeling a little better and going home soon.

      It is a really good idea to have things to look forward to and to try and keep positive.

      I had large clots in both lungs diagnosed in November and it has been pretty hard going at times, and now I am at a stage where I don't like going out of familar surroundings.

      Take care smile x

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    • Posted

      Hi Debby,

      Thank you, I am home now after ten days in hospital I had an MRI

      as they were concerned about infection in my spine, but fortunately

      albeit painfully it looks like a nasty flare up of psoriatic arthritis.

      They have treated the lung infection, and they have stocked me up

      with painkillers I have to see the rheumatologist for further investigation. Can't believe

      how life has changed in the last six weeks! but I have to think UP is

      the way forward. I hope you are doing ok? Little by little we will

      get there.

      XX

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    • Posted

      Hi Janny

      I sm glad you are now back at home and hopefuly beng pampered!

      Life certainly does change and I know that for me I have become alot more aware of any twinge / ache that I get, and also trying to keep the anxiety at a manageble level...

      I had my CT scan this morning and lung function tests yesterday, now just to wait for the results.

      Like you say we will get there little by little smile

      Take care xx

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  • Posted

    I had multiple blood clots in both lungs the last scan they were still there but signs of dispersal. its know a year on but my asthma has been bad lately proberly due theclots damaging my lungs. they say a year is about the right time for them to all go so i am waiting to see. the blood thinners just thin your blood but your body has to break the clots down and disperse them.
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