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thrombosis after dvt

Posted , 4 users are following.

karen62535
karen62535

I have been given site name called "Lifeblood" by specialist today to look at. Very useful info /facts to read if anyone would care to have a look.

2 likes, 37 replies

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  • titanium
    titanium karen62535

    Posted

    I doubt anyone can help with my next request, but here goes.......I need a Haemotologist who is prepared to review my husbands case, and then report his findings.

    Who knows, somebody qualified enough, just may read this. I have long since got over being afraid to ask. Everything is worth a try.

    • karen62535
      karen62535 titanium

      Posted

      I think it depends where you live doesn't it? I live near Bath and I've just seen a lovely one. Not sure if they take on new patients without referral, but you can always give them a ring I guess? Bath Royal United Hospital. Consultant haematologist is Dr Crowe
    • sheila91262
      sheila91262 titanium

      Posted

      Hi Lyn and all on this thread. How is everyone getting on?

      An update to keep you informed. Son went to Guy's & St Thomas in Dec for minor surgery to fit stents in his left leg because of PTS.  Treated by the wonderful Mr Stephen Black and his team. He had 3 stents measuring a total of 33cm in his left leg, groin and abdomen using a needle to feed in through small incision by knee. He was in one night and had a scan and sent home. He is doing well, on 2 types of blood thinner and then just Warfarin for approx 6 months. Will have another scan at 6 weeks to see how stents are doing. Not sure of much change yet to PTS but time will tell. Idea is that stents ill open up vein and increase blood flow.

      We heard back from Mr Ombud who said the hosp had safeguarded him from getting a DVT by blood thinning in hosp for 14 days after abdominal op, even though sent home with no info, no discussion, DVT potential NEVER mentioned, no blood thinners. Their Medical expert said he was young and mobile and so should not have got a DVT, just bad luck. To say we are fuming, after many months waiting is an understatement!  We were able to reply and request clarification and argue but to no avail. Their FINAL reply didn't even

      answer each bullet point we made, only said the hosp made an appropriate judgement.  Waste of time but we had to do it that way. If he had had written and spoken info about DVT at all he would prob have spotted it as soon as it started and not left it until it was massive. As it was continuous from ankle to top of abdomen he was in hosp for 14 days, in huge pain and took 4 days to put weight on his foot. He also though he might lose his leg. Likelihood of death was very high if he hadn't gone to A&E and been anti coagulated. He was told in hosp that he would get PTS as DVT so big.

      We also complained about his delay in going to surgery when he perforated in 2 places in his bowel and they didn't take him seriously and he was in danger and tons of pain. The Omb said they should have listened to him but he didn't die so that was OK, though the hosp has sent an appology for that as instructed by the Omb. They have made changes so it shouldn't happen again. Small victory.

      Not sure what we will do next, might go to court, depends what Solicitor says. I do start each day with thanks that he is here with us and pretty healthy considering, but his life is changed. The NHS is full of great people but also ignorance too. Two haematologists at G&StT have said his DVT should not have been allowed to happen and the affect on his health is serious and life changing. Lets hope the new experimental  stenting will prove successful and his future will be brighter.

      Let me know where you are in your "journeys", I still post in a few places to warn people about poss problems and let them know about PTS treatment as the latter is still not well known.

      Fingers crossed for our complaints!

      Sheila

    • karen62535
      karen62535 sheila91262

      Posted

      Hi Sheila. Good news at last for your son...I'm so pleased for him, and let's hope this is the start of a new beginning. He is only young, so has all the chance in the world. Pass on my regards and good wishes. I've now been re housed into a bungalow which happened at Xmas. To me, this has been a life saver. I can now walk every day without struggling with stairs and it seems to work. The more I can exercise, the better off I will be. When you reach middle age, its harder work, but no pain no gain as they say. Haha.
  • MaximusW
    MaximusW karen62535

    Posted

    First off thanks for the link smile

    Hi people I'm sorry for your losses and struggles, I feel for you all. Im 29 and have a combined antithrombin 3 and protein c deficiency and can't find much info about a combined deficency as they are really rare. It cauaes me to suffer from thrombosis, thrombilithitis ( think I got that right) and dvt's and superficial clots. I have started a thread in this catagory but any help or info from anyone would be appreciatedsmile thanks

  • janish49
    janish49 karen62535

    Posted

    Hello everyone, hope you are all OK.

    I have a new dilemma!

    For YEARS I've been taking Feverfew for migraines .... it actually works.

    I've just gone on line to order some more and came across a site for side effects and interactions.  So I had a look.  It appears I shouldn't be taking this as it interferes with warfarin!!   I decided I wouldn't take anymore but, on further delving into various sites, found I shouldn't just stop taking it.

    I will cut down and when I next go for my INR test will mention this and ask what I should do.

    However, I feel I should have been told about this way back in February when I had the DVT.  The only thing I was told to avoid at all costs was anything with Cranberrys.  From previous knee surgery I mentioned to the Anti-Coagulant Nurse that I had to stop taking the Garlic tablets I take at least 2 weeks before surgery as it is a blood thinner.  The nurse just look vaguely at me and said she'd never heard of that before!  So I asked again when having an INR test and the practice nurse had never heard of that either.

    Consequently, I don't think I'm going to get any help when I ask about feverfew!!

    A week ago I had an appointment with the Pain Clinic to see if my current knee pain can be helped as I'm unable to take any anti-inflamatories while on warfarin. All I got was a few suggestions, such as accupuncture, only to be told I couldn't do that as I'd had a DVT.

    What all this preamble is resulting in is why is there not more help available?  Proper questions and advice.  This is a potential killer, but after diagnosis you're just sent off to fend for yourself and hope for the best.

    Sorry about rant, but I feel very angry at lack of support and help from my GP.

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