Can anyone help please??

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In November I was diagnosed with multiple blood clots in both lungs after halving the dose of Propranolol that I was taking. I had an emergency CT scan as I was having problems breathing and I could barely walk, but now  I am now taking Edoxaban after a very worrying couple of weeks, but I need to know just how long it takes for the blood clots to disappear - no one can give me a definate answer and I feel that I need to know. This is making me very anxious and this anxiety is something that I have suffered from for about the past two years and I dont want to start this again. Also, Im worried that the clots may occur again at some point it I have to take the Edoxaban for life as my doctor at the hospital tells me that its better for me in the long run. 

Can anypne tell me if these things just go on their own and how long it takes to feel 'normal' again without having to worry about them??

Thanks 

Marie.

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  • Posted

    Hi Marie, I had a very similar issue as you in terms of the breathing and walking back in February. I went for scan and was told I had an unexpected life threatening incident spectacular amounts of p.e's !!! Was admitted immediately and given lots of heparin and not let out of bed for 4 days , sent home on rivaroxaban for life . At my 6 month scans all blood clots had dissipated, minimal residual scarring and as far as the consultants are concerned I will have one more 6 month check then just maintenance if all is clear.

    One issue I have had is as a smoker my lungs are now only reading as about 78% capacity and I do cough a fair bit .

    I think there is no definite " clear date" as the consultants were very surprised mine went so quickly . I would just say please don't stress if you can as it won't help and you need to be positive as You can be right now .

    Hope this helps , just enjoy life and let the meds work 👍

    Best regards

    James

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    • Posted

      Thank you so much James for all of your help and advice. The problem is that I dont know of anyone else who had had this problem and it really makes you anxious as Im sure you know...its good to know that there is someone who can help when the doctors are never 'quite sure' of what to tell you - you need someone at the sharp end to tell you what their experience was like! I have never smoked in my life

      so this is not a problem for me, but I do know that the last sats which they took from me was 95% which I suppose is not bad considering the circumstances. I have had one doctor tell me that as soon as you get the blood thinners then the clots do start to dissapate which is good - Im just hoping that the thinners do their job and that is the end of that!

      Thank you again for all of your help..and a Happy and Healthy New Year to you.

      Best wishes

      Marie

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  • Posted

    Hi Marie

    I suffered a massive PE in July of this year , I collapsed at home and spent 5 nights in hospital, I myself have put a post on this site as i have struggled with panic attacks and anxiety. One of the replies I had said that I had been through the worst and survived the PE it's all about recovery now and this is very true . I am on rivoroxaban and my scan results for my lungs came back as clear 3 months after the PE. Now you are on the blood thinners the guy in the street is more likely to have a blood clot than you , i know it's easy to say but stay positive and believe in the medication you are taking , I wish you a full recovery

    Steve

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    • Posted

      Thank you Steve for all of your help and advice. Its good to know that there are people out there with the same problem who are willing to help and its also very good to know that I am not alone in this. As its not that long ago since I had this, then I know that its going to take time, but Im hoping that I have had the end of this - its very frightening as you know from having this yourself and everything goes through you mind, from what you are taking as meds to planning your own funeral!! Thank God its not come to that ending!!

      Have a happy new year and many thanks for your help.

      Best wishes

      Marie.

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  • Posted

    Hi marie i sufferd the same i had multiple pe on both lungs i am only 21 i have factor v leiden. You will mot no when the blood clots have gone but your anticoagulant will dissolve them in about 6-8month its a very traumatic time and i have had to seek professional help to help me with anxiety and depression. I have been without the clots for about 6 7 month and i still worry you always will and the
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    • Posted

      Hi Aaron,

      Thanks gor your reply and Im sorry that you had this problem at such a young age. Im hoping too that the anticoagulants do their job and this is the end of this...its very frightening as Im sure you know and it does cause you anxiety and depression which I have also suffered from in the past, so its not something else we need to worry about.

      I wish you all the best for the new year and lets hope that its a healthy one!

      Best wishes

      Marie

       

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  • Posted

    Hi Marie , glad to be of help ! All I can add is I am factor v Leiden as well , which if you are not is a good plus to have 👍 I was shocked as was the consultant my clots dissipated after this time , so there is always something to be positive about .

    I am very regimented at taking my rivaroxaban as I have never had to be on any meds before except painkillers occasionally, that's the best advice I have , take the meds , try not to overthink things and just enjoy life as this is a big thing to have undergone and being in this position is honestly a good thing , I have taken a trip to Crete since and am going to Italy in April , all checked as okay with doctors , so I'm making the most of life as I never expected anything like this at 42 years old , so it's all good from here onwards !!

    Happy new year to you , and here's to a positive and fun filled 2017

    James

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  • Posted

    Hi Marie,I had massive bloodclots in both lungs on 25th August this year(just!) The consultant at my A&E asked me why I was seeking admission to hospital for shortness of breath and was not at my GP having it investigated as a woman of 61 and the weather being hot. I nearly on my way home had it not been for a nurse who said no I had to have more blood tests. When the next bloods came back completely of the scale it was immeiate X-rays and CT scans and heparin.  The ward I was admitted to had 2 qualified nurses ( spent all shift giving out meds) and the rest of the staff were Care Assistant Apprentices.

    My breathing was worse on discharge than on admission. Iam on Rivaroxeban. When I went to my GP her response was " Oh poor you" (In a very empathetic manner" I took myself back to work in October because I couldn't bear to be at home ruminating any longer, and quite honestly I was scared that something was going to happen every time I was on my own. I still cant breath properly and I have my followup at the PE clinis on 5th January. I hope that the clots have gone but that raises the question of why can't I walk more than a short distance without being out of breath, I also have to be aware of my breathing when I speak so that I can get a full sentence out in one go.

    I never realised how long it seems to take to get over PE.  and I never got a straight answer about how long clots take to disperse.

    Best wishes for a happy New Year

    Maddy

     

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    • Posted

      Hi there madeleine , your admission to hospital sounds like mine , my breathing got progressively worse / dry cough over a month and sore ribs , my friends told me basically I went to hospital one night after playing snooker and struggling to walk around the table , or they would drag me there physically . Long story the hospital did my blood tests and the d dimer test was 12 times the acceptable high , so 2 or 3 shots of heparin later I was admitted ! The consultant told me he was glad to be speaking to me as I had a spectacular amount of blood clots 😳

      That was February 29th , won't forget that day in a hurry !

      Anyway to condense this a lot my blood clots dissipated after 6 months , that was a big shock to everyone they were gone , but as a smoker and such there was a residual bit of damage to lungs , and so I have a dry cough a lot more than normal , I get a touch breathless , really hit me when it got cold about 3 or 4 days ago .

      A suggestion I would make is maybe ask the consultant for a chest x ray and a " lung clinic" appointment to see if any lasting damage done , if your consultant is switched on they may do this anyway but beware it took 5 months from first checkup to my appointment.

      Most of all please keep your chin up , this is a weirdly affecting event in our lives , I feel incredibly lucky to be here , but sometimes a bit " down" that this has all happened and I am on meds forever . Day to day I just get on with it and try and be positive and get something however little out of each day 👍

      Sorry for the long reply , it really does help to talk it through and try to help by sharing experiences

      Happy new year , 2017 has to be a better year !!!

      James

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    • Posted

      Hi Maddy.

      Thanks for your reply and I do know what you are going through I spend the whole day in the hospital to begin with as they thought that my chest pain and shortness of breath was my heart, but they gave me the all clear on this one. I went back home and I was another 10 days before I got to the A & E after seeing a cardiologist at a private hospital (I paid myself as I was so worried) but I think he knew straight away what it was. My own doctor also said to me 'you have been very lucky - it could have been the end of you'! Something which Im sure you do NOT want to hear when the chips are down!!

      I couldbt get to the top of the stairs in the house without fighting for breath and its very scary and very upsetting when you have no idea what the problem is. The time it takes to recover is a big thing for me too.  However, I was told by a consultant that the clots cannot come back again as long as you are on the blood thinners, so this is something to think about. 

      If you are stil havinh shortness of breath then please go back to your own doctor and TELL HER that you are not happy - after all, you are at the sharp end and you need the help and reassurance at this stage. I really hope that all goes well for you and if you have to, take a list of questions with you to the PE clinic (which is what I did) so that you dont forget - and dont take NO for an answer from them!!

      Take care Maddy and I hope that you get better very soon - I know that its very difficult and very worrying but hopefully, things will get better with time. I jusy try not to think about things and I just take the Reboxatan and hope for the best!

      Best wishes 

      Marie

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  • Posted

    Hi Marie,

    I had chest infections 2 continous year one year on my left lung and last year on my right lung. So I visited the GP quite often both years, she asked me whether I had breathlessness, no, shortness of breath, no, sharp pain under the shoulder, no, checked my carves, normal, I had CT scans and of course saw consultant several times, and at the end of last May 3weeks after sawing my consultant I had a phone call from the hospital to go to A&E as soon as I can. I was told they think I have a blood clot so gave me the injenction blood thinner and told me go another CT. The CT showed a smallish blood clot in the bottom of my right lung. So they gave me Warfarin as I have other illness (Wilson's disease) and I can't take other bloodthinner. My INR was almost always between the target level, so I could go to a bloodtest in 8 weeks time. I had a lung perfusion scan in last November which showed the pefusion at the bottom of the right lung is not normal, but I had a heart Ultrasound which was normal. 2 weeks ago I had another CT scan around 9months after taking the Warfarin and it still shows that small clot, my lung healed but the clot is still there. I almost couldn't beleive it, as it is a small clot and in the bottom of the lung the vessels (sorry I can say this word) are narrower... I have chest pains which sometimes just come and go but sometimes take longer to go away anywhere in my chest left right side also. I am only 34 years old. Hope I could help with my story.

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  • Posted

    Hi Marie

    I too was diagnosed in November with large PE's on both lungs and could barely walk and was hardly eating and drinking.

    I am on Apixabam and the doctors don't know how long the clots will take to disperse and that everyone reacts differently.

    I too suffer with terrible anxiety and feel like my life has been turned upside down, and where i used to be really active and loved being out and about, I now get paniky and anxious if I go out and will only wander to the end of the cul de sac and back.

    Try and keep positive and don't be afraid to ask questions, things will get better and you are on the right medication.

    Take care

    Debby x

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