Will they ever go away!

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Hi I'm 38 years old and I was diagnosed with PE about three weeks ago. I was leaving work and was having shortness of breath, I went to the emergency room to do some breathing treatments because I thought it was my asthma, I was also concerned about my right foot because it was a lil swollen, I was given a Cat-scan and found out that I have blod clots on both of my lungs, but the most weirdest thing of it all was I felt absolutely fine, the entire time that I was in the hospital, but I guess that is not the case when dealing with PE'S. I'm taking Coumadin 10mg and it's been okay til 2 days ago I started experiencing abdominal pains, I did my research on the side affects and found out that it was normal, have anyone else experience this problem? I'm terrified of what could happen to me, my Dr does not know what caused this. I had my first INR done last week and the results were good. I would like to test myself at home just to be at ease with myself, my question is does anybody know where I can buy a accurate kit, and will the embolisms ever go away, is this something that I will be dealing with my whole life.....

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10 Replies

  • Posted

    Hi 

    I'm so glad that they noticed your shortness of breath and treated you.

    you are still in the early days and I suggest a minimum of 6_9 months before but you should get an appointment with the pe clinic within 3 months and they'll be able to advise you.

    as for warfarin it takes about 6 weeks to really balance it ask your nurse about self testing but for now just get better.

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  • Posted

    Hi, I have had PE for a year and been on warfarin for the same amount of time.

    I was fine, except for the odd bad head and shortness of breath, up until roughly 12week ago.

    Then I was crippled with bad heads and also getting sharp pains in my chest and sides.

    My heart beats fast and strenuous exercise is a No No!!

    Dr's and Nurse's dont give straight answers from my personal experience.

    I am just glad to wake up breathing everyday!

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    • Posted

      I agree but I can't write on an open forum such info 

      My son has is still experiancing all the above 

      We have put in an official complaint , had their response, I argued and replied all referenced and we have now had our meeting where as an x professional I put them through it .

      nice guidelines advise use of wells formula 2 this algorithm shows how adding up the presenting signs can assist in a diagnosis.

      IF you have been misdiagnosed then complain, the nhs insist there is no evidence showing pe in younger age groups is occurring increasingly not from 60+ 

      read it and see 

      As for going away I think you have answered your own question from a mother's perspective no I don't think so.

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  • Posted

    I will like to dedicate a significant amount of my time/even my whole life to the treatment and cure of DVT and PE and associated conditions that may branch off this illness.

    I hope some health professionals within the NHS read these forums. Ed Milliband, Doncaster North - is putting the NHS at the center of his election campaign. Which ever party is in power, there is scope for improvement as time goes by different people from different backgrounds can contribute to research and people such as us have a different 'motivational drive' to an acedemic or educated, qualified practitioner.

    DVT & PE affects, mind, body, soul, home and family! 

    To elaborate further - Peripheral inputs on the DVT PE individual - be it, social economic class conflict, on long journeys for 3-4hrs, *hereditary blood conditions*?, diet, post operation complications, immobility are inputs everyone is exposed to.

    We are unfortunate to 'get the short end of the stick' so to say.

    I want to summise 'why' and present a logical process to analyse, treat, monitor, cure and prevent...DVT and PE. This can be my lifes work ( i am 41 in January)- voluntary or as an 'apprentice research and development assistant' if such a post exist. I am within commuting distance to Doncaster North.

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    • Posted

      I am v pleased to read this I'd love to set up and action group to push these results observations results to health minister etc 

      to get to the European cardiology professionals to listen to our stories as their results are being used by the nhs

      I challenged them as why the hadn't used nice guideline because they are not statutory! However they are legally obliged to have the guidelines in all departments and make staff aware of the guidelines. 

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    • Posted

      hi gillian81509,

      if you are confident on the administration side of setting up a DVT/PE Health Wellness Service Group' with long term target for holistic cure and no medication - I will give you all my support and participate best I can. I even volunteer myself as 'guinea pig' to ween off medication*, subject to agreed 'assessment/treatment/recovery framework/matrix/process/guidelines'.

      *medication is really important but it lables me as someone with an illness, and I do not want to be reminded of it every day! for the rest of my life!

      I used to work within areas of design/marketing/research and development/within profit centric environments and I have a general understanding of these areas.

      I want to contribute my life & work energies towards a selfless Long Term Directional Objective that is 'FULL HEALTH RECOVERY for everyone with DVT/PE.

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  • Posted

    Hi, I am assuming you are American by your use of terminology? You pharmaceutical drug names are different to ours in the UK. I was diagnosed with unprovoked bilateral PE's in 2010 and am still dealing with problems following my diagnosis. I monitor my own INR levels at home using capillary blood. It saves me a 44 mile round trip for official testing. I purchased my device from Roche, I think it was about £500 but for me it has been an investment in my own health and lifestyle. The testing strips are expensive too but I get these on prescription. If I think my INR might be out of range I don't have to wait, I get immediate results and can alter my Warfarin dose immediately. I hope this helps.
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    • Posted

      Nope I'm English I agree once stastabilised on warfarin self test but the kits r very expensive 

      when my son was here for the 8 weeks he had brilliant care but horrendous care now in soton so he's off warfarin and injection and on the new drug, rivoroxabin  or however it's spelt !!!(using a mobile so harder to spell check) but immediately has oedema, now in full length compression stockings,bad headaches, tiredness but it's cheaper for nhs!! 

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  • Posted

    Hi Gillian, sorry to hear about the side effects to Rivaroxaban. I was actually going to investigate the possibility of switching to that drug myself as you don't have to monitor the INR levels. Once you have invested in the INR device that's it; everything else required is on prescription. It works great for me. It's very sad that although our NHS is a fantastic concept funding always is the decider of drug choice. :-(
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    • Posted

      It's better for my son regarding testing as it was a lottery as to how the numbers were calculated and these are his side effects whether they r yours I suggest u talk to your gp I have expressed my ? On it but the pe respiratory clinics seem to think it's better sadly I'm sure costs have  influenced decision as with all meds until n number have had reactions then it's hard to find interreactuons or cautions  
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