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No clues to a PE but i had them!!

Posted , 6 users are following.

honeybea
honeybea

Hi, i had no signs of a DVT or a PE, apart from short of breathe. No lump or swelling in my leg, no pain in my chest, but the clots had moved from my leg through my heart and into my lung.  Ive now had my first blood test after leaving hosptal and still my blood is way to thick so back on belly injections and a higher dose of Warfarin. 

How will i know if i get another clot, these ones were so hidden, chest xray clear, blood tests fine....im so scared i will have more and die. They actually turned me away from hospital even though i told them i was suffocating and somethign was very wrong, my oxygen levels were at 90% even though they were normally at 98%, i kept pointing this out to them but they didnt mind....for 4 weeks i went to see 7 different dr's and told them im slowly suffocating to death, but the 8th dr finally listened to me, and did a CTPE scan and found the clots, thank God.  But how do i know if i get more!!

1 like, 9 replies

9 Replies

  • marlo32655
    marlo32655 honeybea

    Posted

    While you are receiving anticoagulants your body shouldn't produce more blood clots. You should have a hematologist that will test your blood for coagulation factors and genetic factors that could explain the development of blood clots if there is not a more obvious reason such as recent surgery. Thank God you were persistent and someone finally listened to you! God Bless and I wish you well. I am about 9 months post multiple pulmonary emboli after having 2 abdominal surgeries close together. I have been taking Xarelto for anticoagulation and will stay on it for one year. All my clots are gone but I believe I have residual microdamage as I now have asthma requiring treatment and daily controller medication to keep from becoming short of breath. Take care, Marlo
  • Boval
    Boval honeybea

    Posted

    Wow how unlucky! It sounds like you were badly let down by your health providers! Like my ots they were discreet. Once you get your INR on target you should be fairly well protected. Like you, I was scared they would return and they did but only because I was given a subtheratputic dose of Enoxaparin injections. Dosing depends on your weight so be sure and check that you really are on the correct dose for your weight. I am sorry you had such difficulty getting your GP to take you seriously! Unfortunately that is a familiar story. You have to be persistant assertive. I hope your health has improved now? 
    • honeybea
      honeybea Boval

      Posted

      Hi, well i had to go back on the belly injections as mylevel has been too low at 1.6....my stomach is completely black with severe bruising. I have now got the level up to 2.6 so can now stop the jabs thank God. Am being tested again in 2 days to see if this level is staying stable. Im on 5mg of Warfarin.  I am starting to notice things are different about me though, apart from still being so tired,weak and breathless when i do anything which i am told is normal after a PE.....I have started to notice when i talking to someone either face to face or on the phone before i can finish my sentence, i seem to not have enough breath to say the last word and it comes out as a squeek!  Also, before they diagnosed my clot i had a really bad chest infection for almost 4 weeks, well when i eat a meal im still doing the wheezing i was with the chest infection, also when i sit and watch TV in the evenings i an hear this strange noise, and when im in bed im making strang noises/wheezing, i know it must be loud sometimes because my dog jumps up and searches around the room as he has heard the wheeze noise and thinks theres an animal in the bedroom making these weird noises lol. Sometimes it almost feels that some of the wheezing is in my throat?? But the last two days i have had it where i can't get the last word out when im talking, and my voice comes out really funny and raspy, is this maybe something to do with any damage caused by the clot or anything!! Any of you guys had this yourself xx

       

    • Boval
      Boval honeybea

      Posted

      This was a huge problem for me too. I always ran out of breath before finishing sentences and I choked when I ate which caused me to aspirate; it was all very distressing! I does get better though so hang in there. X
  • colossus
    colossus honeybea

    Posted

    hello honeybea,

    This is my first post on this site. Firstly you've been absolutely right to be persistant, a doctor/consultant for all their skill and expertise will never know how you feel. I first had multiple P/Es when I was 18 years old as a result of a massive right axillary vein thrombosis. I was on warfarin for a year, then I clotted again by the time I was 22. During this second episode I was faced with the same problems as yourself. My impression was that they thought I was a hypercondriac, I was so convinced that I had the same symptoms that I went private and was proved right. Since then I have been on warfarin for life. Without meaning to alarm you, but I feel that everyone who has had or currently has P/Es should be aware of CTEPH. In most cases warfarin therapy and clot busting drugs are sufficient to clear the lungs. However, in a small number of cases, me being one of them, the clots never disperse and the lungs start to form scar tissue over them this leads to chronic thrombo embolic pulmonary hypertension. Sadly most GP's are ignorant to this condition. As already mentioned anticoagulants should prevent further clotting, but I clotted again whilst on warfarin, it's possible but not probable generally. 

    What I have learned from my experience is that 1 year on warfarin after P/Es is not sufficient enough. Never be afraid to speak out to doctors, as this condition being rare means that a vast majority of the medical profession are in the dark. More importantly how often are you having your INR checked? For years mine had been stable, or was seemingly stable. Sometimes it could be a month or two between tests. This is not frequent enough as you don't know what is happening in between. I have a home testing kit and now test weekly, if it falls below 2.0 I take a clexane injection. My range is 2.5 -3.5 I always try to keep it around 3.0.  

    Don't panic and certainly don't let it rule your life but listen to your body, do what you can to take ownership and control of your therapy and just be aware or some of the risks or complications that can result. Apologies if any of this has scared you, it's more so that you know in case further down the line, that you might mention it to your doctor and they can send you for testing, and from that have more peace of mind.

    I wish you all the best I hope you have a speedy recovery I sure it'll turn out fine for you.    

  • -.a-way_forward
    -.a-way_forward honeybea

    Posted

    'Just call me Ian',

    I am being treated with pulmonary embolism since the beginning of October. My first dvt was diagnosed in May of the same year. I have now feel sensationals in my left calf almost identical to times when I had a cramp feeling in my right calf and subsequent treatment and experience.

    I was provided with a pair of DVT compression stockings and was unable to comply with the thoratic technician at my local medical centre. This has a bearing on her communication to me and the DVT compression stocking. I feel tired and alert since going to the bathroom earlier at night, I have also drank three cups of water.

    Since being discharged from hospital, I have not worn my DVT stockings (there first one is ripped, due to rough skin on my hands and heel of my right foot. I am in a transistion period where I have no cashflow and amounting debt. I am in suspension with benefit entitlement and have been given a one month sick note from my GP, a very nice woman though different to the GP that first diagnosed and referee me to accident and emergency at my nearest hospital.

    I am thirsty and dizzy, I know what to do next. More water and sleep_.._?

    I am concerned for my wellbeing, I feel dizzy and have a heavy chest again. This feeling is mapped by the sensations in my left calf and association with a repeat DVT.

    __________

    honeybea, I may write some thoughts when I feel more settled.

    • -.a-way_forward
      -.a-way_forward

      Posted

      I need sick benefit so that I can buy something to remove rough skin on my hands a feet. Am I entitled to it?,who do I ask? Tired.
  • -.a-way_forward
    -.a-way_forward honeybea

    Posted

    hi honeybea,

    may i ask, how you knew your oxygen levels were at 90%. and is there a public reference guide for blood oxygen levels.

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