New here and scared

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Hi

I have just been in hospital with a saddle pulmonary embolism. I collapsed the day after Boxing Day. I have been told I am very lucky to still be here as it is s very large clot covering both lungs.

I had to have Injections in my belly.

I am normally fit and healthy but this has knocked me for six.

I can't do anything without being out of breath. I hate being sat around not being able to do anything. I am so scared this will happen again as I am just sat about.

Has anyone else had this and how do they feel, how long does it take to feel better? I have an echo scan in 2 weeks to check my heart.

I am on rivaroxaban now for the rest of my life.

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18 Replies

  • Posted

    Hi Caz,

    I had bilateral pulmonary emboli about 4 months ago and it does get better. Immediately after they happened, I could scarcely walk across the house. i was told not to overdo it, but that moving around was not risky. Progress was gradual, but after about 10 weeks, improved greatly. 

    The anticoagulants are used to stop further clots, so don't actually deal with the existing ones - your body does that over the coming days/weeks.

    Your body is also busy healing, so this will also sap your energy.

    Anxiety is given as one of the symptoms of PE, but also (from observing) seems to be a characteristic of recovering from a PE. That gets easier too after a few weeks.

    Good luck with your recovery and if you have any other questions, don't be afraid to ask someone. I would imagine your will be seeing a consultant in the coming days, so make up a list to ask him/her. I am sure they will be happy to answer them (mine was).

    best regards Peter

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    • Posted

      Hi Peter

      Thanks for your reply.

      I'm sorry about your embolism but good to hear that your on the road to recovery 😊

      Your words are much appreciated.

      I'm hoping my tiredness will get better as time goes on.

      i have a few appointments in the coming month so will write a list of questions. That's a good idea.

      Just speaking to people who have been through this helps.

      Thanks

      Carol

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    • Posted

      Hi Carol,

      You are very welcome. I remember how scary it was back in September when sat around doing nothing in particular wondering what on earth had happened. I had never even heard of a pulmonary embolism.....

      I found information about PEs quite readily available, but information about recovery from PEs a bit thin on the ground. My consultant mostly sees people for other disorders (COPD, athsma, etc.) so even he has more limited exposure than you would first think. When I was in hospital, I was the only one.

      Take heart that, now you are on anti coagulants, you are at very, very low risk. Who knows, maybe even lower than the general population.

      best regards Peter

      p.s. don't worry if there are only a few posts in this group - it is quite small at only around 100 people.

      P

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    • Posted

      Hi

      Looking at those statistics it is quite uncommon so we are very lucky!!

      I have also found that recovery information is a bit scarce. I am pleased to have found this forum.

      I suppose when you look at it that way, being on the Rivaoxaban I am unlikely to get another clot but I still worry.

      I just can't wait to get back to health. I know it's going to take time though. I was the only one in our hospital with this too but the doctor was great!!

      Thanks again

      Carol

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  • Posted

     I had the same thing 2 years ago and remember getting chest pain just walking across the room. I had the large saddling clot in my pulmonary artery and many more emboli throughout 4 of 5 of my lung lobes. I took Xarelto (Rivaroxaban) for one year then two months later had a minor surgery and gave myself Lovenox injections and still got PEs though smaller. It has been a slow recovery mainly in the hit my immune system took and I began suffering terrible asthma daily as a new adult onset for this past 8 months. I finally figured out on my own that it is a severe wheat allergy and stopping all grains I have been breathing so well it feels like a miracle.

    Caztratt, it is amazing we both lived through such a bad case as a saddle embolism is nearly always fatal. I'm on Xarelto now for life too. You will feel better! Take it slow and try to eat as healthy as you can. I felt better by one month and was ready to go back to work after two months. I am a nurse and work 12 hour shifts in a very busy trauma ER for children. God bless you and I pray for a thorough recovery for you!

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    • Posted

      Hi Marlo

      Wow you have been through a lot.

      Yes I do think we are very lucky to be here. It has been nearly 2 weeks since I came out of hospital and I can honestly say I do feel a little better than I did, I know my limits as to how much I can do before I get breathless which is pretty much not a lot. I just have to be patient and not rush things. I have totally changed my eating.... More healthy.

      Speaking to people here who know what your going through really helps.

      I thank you for your kind words and also wish you a full and healthy recovery!!

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  • Posted

    Caztratt

    Stay hydrated at all times.

    Go to toilet and don't hold it in.

    Make sure the rda vitamins and minerals, omega 3s are fine with your medication.

    Whilst in bed, sit up ish knees slightly bent and maybe lean to left hand side - or whatever is most comfortable.

    Wiggle your fingers and toes as often as your can. Feel gentle tension from extremities to your core.

    rest!, rest! ,rest!

    defer your resonsibilities to a responsible person and or speak with Citizens advice.

    I am trying to be part of/or set up a support group/network for people new to this condition.

    rest! rest! rest!

    My telephone number is 07533 939273.

    you can call me Ian.

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    • Posted

      hi all

      am in the same boat dvt leg and both lungs 2day bad day lungs hurt and very out of breath been on rivaroxiban for bout 10 weeks still ave bouts of tiredness soooo bad like cnt stay awake and so scared now as recently got divorced hpe u reply 

      paula 

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    • Posted

      Hi Paula

      I'm so sorry you are having such a bad time.

      It's been 3 weeks since I was rushed to hospital and I can say that I am feeling a little better than I was.

      I think about how I felt when I came out of hospital. I couldn't even walk to the toilet without being out of breath. Now I can potter around a little so I know I'm improving slowly.

      I too am on Rivaroxaban for life. It scares me a little but I'm slowly getting used to the idea

      You are a little further on than me from diagnosis. I do hope you will feel better in time. I had my first anxiety attack last week. The pain in my chest and lungs very tight. I panicked thinking "oh no not again" with help from my husband I breathed slowly and rode through it. Quite scary!! I have asthma so I do t know wether it's that tightness in my chest or my lungs. Its something I'll ask the specialist.

      If you do feel like you are getting ill again. Don't hesitate to go to your A & E. That's what they are there for. I am having an echo scan on Thursday which I'm nervous about but just want to know all is ok inside really. I do hope you will feel better soon. You are going through a lot but just talking on here to people who understand what you are going through helps I think.

      Take care

      Carol x

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    • Posted

      hi carol 

      have u just been diagnosed ? ive been on it for bout 10 weeks rivaroxiban that is got bloods next week n see wot  they  say dnt know whether stayin on it yet tho but yes very scarey x

       

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    • Posted

      Hi Paula

      Yes I have. I collapsed 3 weeks ago and rushed to hospital where they found the saddle pe in my lungs.

      They said I will be on Rivaroxaban for life. I'm sure I'll be having lots of bloods done to check all is well. Hope your feeling ok x

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    • Posted

      hi carol  

      o i see i went wiv swallon calf  and pain and breathlessness just thought was dwn to my fluy thing  had at the time so i was really lucky then i said was puffy n they done a scan n found one in each lung i still feel crap tho even tho its been 10 week wish u well x 

       

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  • Posted

    Hi, I had back pain and short of breath. My GP sent me to hospital on the 30 December. Had CTAP Scan on 31st and it showed multiple pulmonary embolisms. Small ones at bottom of my lungs and a larger one on my right lung. I had an injection in my stomach and im taking Apixaban for 6 months. Sunday I got a new pain in my chest on left side, its still there and worrying about it and dont know if i should call GP.

    I have found it hard to find what the recovery is and didnt get much information from the Dr at the hospital. Was given a prescription and sent on my way.

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    • Posted

      Hi Sally

      Bless ya. I know how you feel. There isn't much info on recovery. You don't know wether to do a bit or do that bit extra, if it will make you worse!! I'm seeing the doc on thurs for a heart echo. I'm going to ask lots of questions. Do you have any more apps for a follow up? If you are worried then don't hesitate to go back. I would!!

      It's a very scary thing to happen. Your left feeling how and why me.

      I hope this helps

      Take care

      Carol x

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    • Posted

      Thanks Carol,

      I dont have any follow up apps. It is so scarey, think I might call dr if pain is still there in a couple of days. I dont want to bother them, especially reading that it can take a while for pain and breath to get back to rights.

      Not that any tume is good/bad but what a start to the new year!

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    • Posted

      I know what you mean. It's only been 3 weeks for me and I still can't do much. Very frustrating and I'm sooo bored being off work!!

      I am usually fit and healthy and not one to just sit around (I hate doing that) but now my sofa is getting my backside print on it!!

      I think you should maybe ring your doc for a chat, do they do that? Just to put your mind at ease. You wouldn't be a bother it's only natural to feel like you do after such a scare.

      Let me know how your getting on

      Carol x

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    • Posted

      I havent had the best health record, ive just updated my profile.

      I dont work, im 36 now and since my diagnosis of Leukemia when I was 22 ive suffered with many side effects. Been on HRT for over 10 years, thats why I am where I am now.

      It must have been so scary for you collapsing. Did you know that you collapsed or did you wake up in hospital?

      I will give them a call and let you know what they say.

      Its good to have someone to talk to about it x

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    • Posted

      Awwww Sally. You have been through a lot!!

      You should be proud of the way you've come through things.

      When I collapsed I was in the garden. My husband put me in recovery position and it didn't take too long for ambulance to come. They said I'm very lucky to still be here which I'm still trying to get my head around.

      You have been through so much in your life at an early age, it must be scary for you too!!

      I'm glad your going to ring the docs. Hope it goes ok. Keep me posted. You can chat with me anytime 😊

      It's good to speak to someone who is going through the same. X

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