How can I live an enriched life with DVT and Pulmonary Embolism? feeling anxious and want to talk

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I volunteer my time to share my feelings, to better understand my condition,

so that I can have an enriched life for myself, daughter, wife, extended family,

friends and meet new people to give a meaningful purpose to being creative and productive.

I see this as my path to recovery and purpose.

Please remember my words and contact me.

Thank you for consideration and listening.

'Just call me Ian'

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15 Replies

  • Posted

    My first blog.

    I do not speak or write for people with PE and not have internet access, can not read, write, mute, hard of hearing or no sense of touch or unable to travel.

    Nor do I speak or write about people living alone with this condition. I think will be people with elevated adrenalin levels coping with every breath and feeling their heartbeat trying to fend for themselves and their next of kin.

    There is little support. This is why I am trying to address this issue naturally without medicine. In addition to anticoagulants.

    How can we highlight this issue to

    persons like me or persons with experiences similar to above.

    I was diagnosed with DVT in May, after my first heparin injection, I had difficulty to breath and got taken to hospital by ambulance. About a month ago, I had my second PE and was informed that my right ventricle had severe impairment.

    I used to be physically and mentally active. Now with every breath and heartbeat I have, I want to live healthier and stronger than ever before and be content and grow to be all that I can be. I want to work and my chest feels heavy and my eyes feel blury. A young father and husband.

    Who will read this blog? Who will contribute their story? 

    I am alone. I am not lonely. I am a young man.

    Thank you for reading.

    My chest is still heavy, and I am listing to classical music.

    I must be tired and my eyes are still open.

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  • Posted

    A new password for my login to comment on this thread.

    This shall be easier to remember and be reference from a single point of access. 

    An idea for discussion group administrators, would be to monitor this discussion group in the interest of people with Pulmonary Embolism and DVT.

    I do not want to be, shielded or filtered from information relating to improved well being. These can be emotional times, and I think now there may be a need for an administrator>patient>public forum view.

    I feel tired and weak, I know its early morning, this is not the way, in my opinion. There could be people with PE reading this discussion in different time zones reading this thread as a source of empathy, inspiration and support.

    I will comment again later.

    My eyes are tired, feeling dizzy.

    I will rest some more after I drink a cup of water and a visit to the bathroom.

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  • Posted

    Hi,

    My names Emma & im in hospital at the moment, i had a hysterectomy on the 22nd & 8 days later started with chest pain.

    My gp told me it was pericarditis! I wasnt convinced & went to A&E, after a vq scan i was told i have several PE's in both lungs. I'm now on claxene injections & warferin. It has totaly freaked me out that i have these & that i could of died.

    I'm also scared about the future now as i feel it will always pray on my mind that this may happpen again & what if i dont get lucky nexttime. I'm only 36 & have two small children & feel very alone & scared.

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    • Posted

      Hello Emma,

      I am listening to you all I can say for the moment is when you feel lonely, you are not alone. I have experienced a different angle to events leading to PE,

      When I am writing this I see a prism and colours in the light. Find the colour and that is all I can say...and express.

      I am tired now.

      Take care and rest, drink when thirsty, eat when hungry and breath for yourself. This important for me. Thankyou.

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    • Posted

      Hello ema78,

      I have change my screen name today to '-.away forward' as i believe it is better representative of what I am writing, than 'spotyplonka1'.

      This maybe due in my feeling of elevated adrenaline levels in my basic drive to understand pulmonary embolism. Clarity and credibility is the reason for my screen name change. 

      I have sensations in my chest (left hand side) and behind my right knee and I have been coughing today. I had a little bleeding from my gums this morning. Nothing to be concerned about. I feel tired an want to be still now.

      I think positive and hope the sensations within my body is a holistic way to get better. I am looking for foundations to get better and release from DVT and PE. 

      I feel better now I got this 'off my chest'. You can refer to me any way you like to feel better, I can be a rock or a pebble to you.

      I am listening to "Mix - Sam Bailey - Skyscraper - The X Factor 2013 Winner's Single"

      by YouTube

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  • Posted

    In addition to my personal reference of side effects (common occurance within 1-10 people and common occurance in 1-1000 people) with my treatment, I have started to cough now and again, with a little flem (no sign of blood). I surmise my body is regulating itself with treatment with DVT and PE.

    I have sensations in areas within my body where I feel blood is flowing. I do not feel pain, however I can not correlate my sense of feel with available information. My journey to health and life may include 'confirmation bias' as feelings inside my body are my primary defence mechanisms to a way to healing. This may include my adrenaline levels. I am interested to learn more about health and life and so continue my journey.

    Rant over.

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  • Posted

    Hi People,

    I am 29yr old male and got diagnosed with PE following a DVT after a leg operation 12mnth ago.............

    About 1 week after the op I went for physio at the hospital that operated. (Worth travelling 3hrs because local Trusts are VERY POOR).

    Once there I asked why my opposite leg was sore and tender to touch and was told it was "More than likely" due to the fact I could not bear weight on my operated leg and thought no more of it.

    What I experienced over the next few days was unbelievable!

    Started with Spasms on my back. Hurt to turn, reach for things etc.

    Then the shortness of breath started.

    Horrible SHARP SHOOTING PAINS on 1 side of my back. Could not lie down in bed and was awoken by a HORRIBLE SPASM and a feeling akin to being Stabbed.

    Went GP 4 an emergency visit & was told after examination that I 'possibly' had Trapped Wind and/or CONSTIPATION!!! Yes REALLY!!!

    After another day of Excruciating Pain and feeling like I was going 2 die, I went to a&e because the pain was intensifying and spreading to the opposite side of my back and by this point I could only take Short Sharp Breaths!!!!

    Once at a&e I was examined and sent 4 an Xray then a CT Scan followed by admission onto a Ward.

    Was told it was an Infection then told that a Dr had looked at the results and it was 'Big Clots' and I was VERY LUCKY TO SURVIVE............. 0smile

    Anyway, was told inject myself daily and take Warfarin for about 3mnth. A year later and my INR Level has only been at its Target Two Times. Its either Too High or Too Low! 

    Always ask questions and get fobbed off. Some Dr's/Nurses tell you how it is but others seem CLUELESS and leave you with more Questions than they give you answers.

    Last few week I have been a&e because of Sharp Stabbing Pains only to be told "Its probly DUE to previous Clots" and I am also experiencing Shortness of Breath, Bad Heads (Apparantly Caused by my NOT TOO GOOD BLOOD SUPPLY), A Stitch like feeling in my sides, Chest Pain (Dull Ache near middle of Chest), Discomfort when leaning forward, Cramps in Both Legs, Fast Heartbeat. Sure there is more but I keep them to myself because it feels like nobody cares!

    This was preceded by my local Nhs Trust saying my original Injury to my Leg was IN MY HEAD! Was only when I payed to see a Proper Specialist that my Injury was Confirmed and Operated on!

    After reading threads on here I am glad to hear that the Dr's, Nurse's and Hospitals have Fu##ed other people up also! :-/

    Apart from this I dont have a Bad Word to say about the NHS!!!! 

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    • Posted

      I hear you m8. and I can understand where you are coming from. Some people are not in the fortunate position tto pay for specialist. The NHS need someone with first hand experience of the physical and mental aspects of health DVT and PE etc... 

      I'll get back to you later as i'm with my daughter.

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    • Posted

      I saved up and borrowed, begged n stealed to enable me to see the Specialist m8.

      Was fobbed off everytime I seen so called Specialists near my home area.

      Only on benefits. Going without food etc was hard but worth it when some1 with knowledge told me my injury was NOT IN MY HEAD!!!

      If the injury had been rectified years ago then I doubt I would of even got PE.

      Deffo need access to DVT and PE Specialists on the Nhs coz otherwise it is just Dr's and Nurse's playing GOD!!! :@

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    • Posted

      My impression is that after you first had the op on your leg, you travelled 3hrs for physio, you may have got another DVT on other leg...at the same time you may have over compensated balancing on your good leg (with new DVT clot) and pinched a nerve in your back.

      Maybe then the pains and symtoms began, the clot moved into your lung/s. PE. (Very nasty).

      I'm sorry to hear you back at A&E again because of 'previous clots'. Pls elaborate on 'Bad heads' and not too good blood supply'.

      It is a horrible 'feeling' when you have clots moving into your lungs- my recent experience and observation is that the clot 'feeling' is like a trigger and may set off a chain of events, adrenaline, anxiety, etc, which manifests in your body and head at the same time.

      It is difficult to differentiate between genuine PE symptoms & discomfort and PE pain and anxiety. I think it is perfectly natural to have things going on in your head (when I feel I have a clot in my lungs I go into what I describe as 'Defcom survival mode'

      I think the injury you had years ago may have left some sort of scarring within the veins in your leg. (A reduced bore sized vein)

      This illness, may affect your mind, body and spirit. Depending if you are agnostic, atheist or have a belief.

      I was discharged from the hospital 11th October 2014, after a potentially dangerous PE.

      I have had some of my benefits stopped and have debt, liabilities, loss of small business and near negative cash flow/unemployment + small family unit. I don't think I am the only one. Something is wrong. The NHS and social welfare system can be improved for residents in the UK.

      This is important.

      I am thinking how to contact Ed Milliband, as I have found out today he represents Doncaster and NHS is important to him.

      I'm trying to put things into perspective. But in the immediate term, i am being bounced around between citizens advice, my GP and the hospital. All three parties are helping within their remit. It seems I'm out of their remits combined.

      Im in no mans land, and there is a possibility I may not be here in the short, medium or long term.

      If im gonna go, i want to use my experience to help others that may have DVT & PE today and in future. And also do what i can for my family.

      Can you help me?

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    • Posted

      Keep ya head up Fella!

      We are STILL Breathen........ Even if it does hurt!!!!

      On my last visit to a&e (I went because of Sharp Stabbing Pains that got Worse when breathing) the Dr told me I will suffer from Bad Heads due to my Blood Supply NOT Being Very Good!

      The Pains felt like the Pains I got when I first had the PE.

      After bloodtest etc he told me that its 'Probably' due to the Old Clots!!!

      A Nurse in my GP's told me on my next INR test that if anything Nasty is Happening then the Warfarin should stop it from taking hold!!!!

      I think there needs to be Adequate Treatment, Prevention and Cure within any organisation that should and could help.

      My insides feel worse now than they have ever done

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    • Posted

      your insides may be a reflection on whats going on outside. maybe move to a different environment. sit in your garden,try an mix things up a bit, music,tv, a long soak in the bath? .just an idea...
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    • Posted

      "the Dr told me I will suffer from Bad Heads due to my Blood Supply NOT Being Very Good!"

      I think any little clots travelling from deep veins to pulmonary atery will end in your lungs and dissolve there. The function of your heart may adapt to the situation and reroute blood flow to other arteries. Maybe 'Bad heads' means less oxygenated blood to your head- resulting in symtoms of headache* and so on...

      "After bloodtest etc he told me that its 'Probably' due to the Old Clots!!!"

      I did a little research into google 'old clots'. The findings seem to coincide with some of my earlier thoughts on DVT and PE. 

      In laymans terms, I think DVT & PE clots could be renamed as sticky blood deposits, that are in suspension and also adhere to walls of our veins and arteries. I think my the body's veins, arteries and valves have compensated with blood flow restriction/s, in some instances i imagine- a skin forms around the 'sticky blood' and preserves 'it', it remains insitu until disturbed.

      I don't want to write any more, as it is all guess work.

      Below is a link to what I googled earlier.

      http://news.illinois.edu/news/11/0531-blood-clottiing_JamesMorrissey.html# ;

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    • Posted

      Cheers m8.

      My heartbeat feels faster than its ever done.

      Feel out of breath, get a tight chest & cramps in my legs whether I exercise & do stretches or whether I walk for a while.

      Do you get or have anything similar?

      Freaks you out I think.

      No1 seems to give definitive answers when you ask or report the feelings to the Dr's & Nurses.

      ps My original injury is no better either.

      The injury was left unfixed too long to have a chance to work

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    • Posted

      Good evening MA,

      Re: your heart - go and see a doctor in your own time. or ask someone to help.

      I've been walking my daughter to and from school recently, and plan step it up if possible every day now. Energy is still low, cravings for porridge, toast, honey and marmite, processed cheese. I've got cramps/tight muscles at the back of both my thighs and behind my left shoulder blade, and now and again feel pains/sensations from older sports injuries.............

      I starting to do other tension exercises aswell (when walking....etc) My head at times feels a bit spaced out, short attention span/memory, brighter lights?...

      'Freaks you out I think' - try and put it down to experience and or accept...

      I'll get back to you later re. other things - at home with daughter... 

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