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Getting help after !!!

Posted , 4 users are following.

carol350
carol350

I have had no help at all after Multible clots last December just a heart scan to see if their was ant heart damage .

i would like to join a group that I could go to and ask how people feel now as I had post traumatic stress after and I have now a protastic tremor in my legs x

and feel lousy most of the time x

how would I start to find a group of this kind please x

2 likes, 9 replies

9 Replies

  • rachel63208
    rachel63208 carol350

    Posted

    I'm sorry-the lack of follow up after a PE is appalling- in the UK anyway. I had mine 8 years ago and am still having pain over the site; just last week I had  a chest x ray because the pain concerns me. This seems like a good group to join. Hope you find it supportive.
  • Boval
    Boval carol350

    Posted

    Hi, I sympathise with you as my experience was pretty similar and because of lack of aftercare I developed further PE's; had I been monitored they might have realised I was on the wrong dose of Clexane and prevented further injury. I begged for help and got turned away. There was no support anywhere. Hospitals are overstretched and nobody seems to 'care' anymore. 
  • carol350
    carol350

    Posted

    This is after all a life threatening illness so why is their no groups anywhere in the uk 

    I find everything else but nothing for this I may ask my MP some questions !!!!

  • rachel63208
    rachel63208 carol350

    Posted

    Absolutely- at the time of mine, 8 years ago, I entered into letter writing once I was feeling capable of doing so with the hospital Trust where I was treated, and with the British Lung Foundation-as even they, unbelievalbly at the time, didn't even have  a leaflet about it- though I believe they do now. It does make me so cross, that there is endless support (rightly so) for cancer or heart disease, but absolutely nothing for post PE. As you say, it is  a life threatening disease, which can kill in an instant, and if it doesn't, can leave physical side effects and emotional trauma for years afterwards. Seems like not a lot has changed by what I read on sites like this, and it's not good enough. Contacting our MP sounds like a good idea.
    • -.a-way_forward
      -.a-way_forward rachel63208

      Posted

      rachel63208,

      What can a politician do? I had an appointment today at the VTE ward, the doctor was more concerned with the list of 7 outpatients he had to see. Also, he said his remit was medication and recommended I make an appointment with my GP.

      I feeling rough this afternoon and heavy chested this evening. Let's try and sort this out within 2-3 months. 

      It's important for people with this condition.

      Ian.

  • Boval
    Boval carol350

    Posted

    Personally I don't think a support group is ever likely to  get funding from the NHS. These groups are initiated and funded by volunteers and fundraising charities. Until that happens nothing will change but this forum is a resource and sounding board for us. :-)
    • -.a-way_forward
      -.a-way_forward Boval

      Posted

      I've got 2-3 months till my heart scan, (I had a severe right ventricle impairment due to back pressure from my PE beginning Oct 14).

       I want to volunteer my time. I feel lost as I am not sure of my current classification. Am I sick? disabled?, physically or mentally ill? I need to know where I stand so I can form some sort of closure and move on.

      I feel like a 'ghost walking the green mile' sometimes...and I've got responsibilities I need to take care of. sad

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