Is it likely to be another PE?

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Hi guys, I first got a pe in May in my left lung (which showed previous) and since then been on fragmin. I'm still struggling on a day to day basis with relaxing/paranoia etc! I never showed any signs of a pe, got admitted as they thought I had a infection, on methotrexate and white blood cells all over the place!

Anyway since all this I am suffering from a tight chest (anxious) and constant pain/ache in my lower to middle back and down my left arm. I've been checked out on numerous occasions and sent home from hospital with a ' probably another pe but we can't do anything as your already getting treated ' won't scan me as it's too much time and money.

I'm non weight bearing due to a leg operation in march which has gone wrong so this complicates everything. Being told to go home and rest does not really wash with me!

I know you guys can't do anything but your advice is much appreciated.

Julie.

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15 Replies

  • Posted

    Hi Julie. This back pain is awful . I am still suffering with it 13 months into recovery. Anxiety is your worst enemy. It just takes you round in circles. Try to relax.!!!!! Sound stupid but you have to think positive it will get better. I am on apixaban for life You are having the treatment for PE's so they shouldn't reoccur. 😍💐

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    • Posted

      Hi Lizzie, thanks for taking time out to comment. It means alot having the support.

      I'm going to be on warfarin for the rest of my life once the treatment of fragmin is over! I can't have apixaban as it doesn't work with my arthritis meds!!

      Hope your ok and your recovery cycle and back pain will soon ease! And yes anxiety is our worst enemy!! And who needs that!

      Take good care

      Julie x

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  • Posted

    Hi Julie,

                  My PE didn't hurt at the time it was found in April,

    all I had was I felt light headed & I couldn't breath but no pain at all.

    I was rushed to hospital where they found a massive saddle blood clot across both lungs.

    I was in hospital for 10 days and I will be on Rivaroxaban for the rest of my life.

    The pain started after I came out of hospital and it is  horrendous,

    In the front of my lungs, my back & heart.

    I'm lucky as my consultant and GP are really good and I've just had two follow up CT scans,

    Please talk to your doctor/consultant and ask for another scan or a follow up scan to see if the blood clot has gone or not. 

    and ask for pain killer if you need them as the pain is not just down to anxiety ( even though the anxiety gets worst after a PE )

    We are all here to help and support you. 🌺

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    • Posted

      Hi Elizabeth, thanks so much for taking time out to comment.

      What you have been through sounds horrendous! I'm so pleased your here to tell the tale! The relationship with your gp is so important and I have a fantastic relationship with mine so I will ask her to refer me for a scan just to put my mind at rest.

      I really hope your recovery is good and the pain will soon subside! Has anyone given you any indication when it could?

      Many thanks again

      Julie x

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    • Posted

      Hi Julie,

                   To be honest no one can give any of us a exact time when our pain will go,

      Some I've heard on here can last for years, which horrifies me.

      And the pain can also move, some say to the place where they had their DVT, others in their back etc..

      I've resently been given a sublingual spray

      'Glyceryl trinitrate' as I was suffering a lot of pain across my lungs and also my heart,

      So having the PE put extra strain on my heart, so my doctors are booking me in to check my heart too now.

      Im not going to lie, 

      I'm 52 and since April my life has changed completely and it is really scary that this could happen to any of us.

      I was told that two thirds of saddle pulmonary embolism's are diagnosed post mortem.

      Please remember you are not alone and this group I have found to be really helpful.

      Just knowing you're not alone I think helps a lot too.

      I hope you start to feel better soon, baby steps.

      and yes do ask your GP to get a follow up CT scan as that would also help to put your mind at rest to. 🌺   

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    • Posted

      Hi Elizabeth, I'm not gonna lie, I'm shocked with what you have told me! And indeed it's very scary, very scary indeed and it does change your life and you as a person!

      My friends have commented that all this had changed me! And it sure has! I've lost confidence, I'm scared, the pain rules your life and I just don't know what else to expect!

      You must be out of your mind now they are checking your heart? But thats a good thing that they are been thorough, feel positive about that, they are keeping a very close eye on what's happened. And hopefully the GTN spray will help ease some pain and tightness around your chest. You are doing great. And like you said 'baby steps

      I have so much other stuff going on as well as the PE it's a wonder my brain hasn't blown up and the corrective surgery to my leg is any time soon. I'm seeing a new consultant today about this, so fresh eyes!

      I will be requesting a scan off him and my gp when she comes back from her jollies.

      Take care hun and thanks again.

      Julie. Xx

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    • Posted

      Hi Julie,

                  Sorry for the late reply,

       I had visitors turn up that I wasn't expecting.

      Good luck for today in regards to seeing a new consultant,

      Hopefully he can put your mind at rest about your surgery on your leg,

      I know I would be worried sick about the operation plus you are going to have to be on bed rest or at the very least limited activity, so that must be another worry for you.

      Yes it's certainly a life changer,

      I know with me the anxiety gets to where I'm too scared to leave my house, I'm worrying all the time, and things I used to do without thinking, I'm breathless just making a cup of tea.

      I'm a very dependant person and suddenly I having to rely on my kids is hard for me.

      Plus I think it's the not knowing how long we will have to live like this is the most scary part.

      Look after yourself hun.

      Warmest wishes to you 🌺

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    • Posted

      Hi Elizabeth,

      I've finally seen my new consultant! Had lots of x rays, long leg alignment ones too. Bloods done. I have to have a PET scan. Then I'm looking up to having 3 major surgeries!! Now have a non removable cast on until scan is done. My femur is that fragile. Non weight bearing whats so ever! Stressed that alot!

      So that's about it until the results of the scan come through and they can see what the mass that is growing inside is! He is v annoyed that I have been left to get this bad!! 😦😦 concerned that in my notes there are no follow ups to my pe back in May!

      I'm on methotrexate and sulfazalazine for my arthritis and not seen anyone in 18months. A new hospital may bring a whole new beginning!!

      Hopefully with new eyes on the situation I will be sorted pretty quickly. He is looking at 3-6 weeks depending on the results. So fingers crossed.

      I hope you had a great time with your visitors? That will have lifted your spirits some? It must be so hard for you feeling that scared! And trying not to loose your independence will all factor in your feelings. Your children will want to help you im sure hun, buts it's that's asking! I know! But they won't mind. You need the help so ask, You need to be able to leave the house so ask. You must not feel alone otherwise your anxiety will go through the roof! I know what I'm like sat in bed all day on my own! You can get out hun so do it. Break that cycle. You need it before it beats you 😊

      I'm feeling a bit happier that something is now happening. But apprehensive as to what! Roll on the scan!! Now breathe!!

      Take care. And keep writing. I will keep replying. 😁

      Julie 🌻 xxx

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    • Posted

      Hi Julie,

                  That is great news,

      at last a new consultant can see what you have been going through and is annoyed on your behave and concerned that you never had a follow up from your PE.

      Let lone being left to get on with it on your own.

      I'm so glad that this consultant sounds like he is getting things moving for you.

      Fingers double crossed for good news on your blood test or at the very least if anything is found, they have caught it in time to do something about it.

      My thoughts are with you hun,

      You have made my day that finally someone is there for you.

      Hopefully this is the beginning of getting everything sorted at long last.

      Now get a good book and rest!!! your femur being that fragile needs no weight bearing at all !!

      Doctors orders 😊🌺

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    • Posted

      Thanks Elizabeth 😍 i feel a bit calmer knowing things are in more capable hands!

      And thanks for your support 😍 it helps so much talking to other people with similar problems.

      You take care and I'm always here to listen.

      Julie 🌻🌻 xxxx

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  • Posted

    Julie

    I had a DVT in my leg after a failed knee op in October last year. In may this year I was diagnosed with multiple clots in my lungs, I don't get pains any more but do get very anxious. I to asked for s ans to see if clots had gone but got same answer as you. But I am on rivaoxiban and I'm told this treatment is what I will get and I'm on them for life. If your being treated then time is the healer, so not much help but try and stay positive.

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    • Posted

      Hi Mort,

      Scary stuff reading your message as it's very very simular to mine! I hope by now you have had your failed knee surgery sorted out??? It's a tough long haul!

      As for your lungs and PE's, I'm relieved it's not just me that has been told all this!!

      I try to be positive o raç

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    • Posted

      On each new day but it's very difficult with the pain so intense.

      Anyway take good care Mort and fingers crossed for a full recovery for whatever surgery you need next on your knee.

      Julie 😊

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    • Posted

      Thanks Julie no op for at least 12 months because of clots. Hope you will continue to improve. The good thing the docs know you have the clots and you are being treated. Just stay upbeat. Take care
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    • Posted

      Hi Mort,

      How are you managing with a failed op and not having surgery for 12 months? Is this due to the clots or due to the fact you need to heal?? Is this usual practice that you can't operate until 12months??

      Hope your not in too much pain? Just asking as I'm in agony and if they come back and say they won't operate until may ( my diagnosed pe) I will be devastated!! Especially with the state of my leg and my cosultant saying i may need up to 3 ops!

      Oh my days! More things to worry about!!

      Anyway! You take care and keep me posted.

      Julie. X

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