DVT or not, that is the question?

A few years back when life was very much in the balance for me I had a bit of a set back while I was recovering in ITU. I've been a motor mechanic for 30 years and like to think I know a little about diagnoseing faults so when I woke one night with a stabbing pain in the hamstring area of my right thigh and found my leg was icy cold below the pain I shouted for a nurse. First we checked that there was nothing in the bed that I had been lying on and there was nothing so I then suggested due to the obvious lack of ciculation of blood to my lower leg could it be a deep vein thrombosis. The nurse just seemed to dismiss this and told me to get back to sleep.

Well after moving my leg around a bit and self massageing, the circulation returned to my leg and the pain went away. I fell asleep but woke the next morning to find my right leg had swollen to the size where it would have looked more suitable on an elephant. Of course my timeing was not good as this was the Saturday of a Bank Holiday so consultants were non existant and the doctors available were only junior's. I stated that surely it was a DVT but once again nobody seemed to want to take action and I was assurred that my diagnosis was incorrect. At this point I doubted myself and thought thier the experts so it must be caused by something else, but what?. My whole family were very worried and also questioned the doctors that were around about whether or not it could be a DVT, they to came across the same stubborn response that there was no way it was. It was nothing short of amazing how many doctors and nurses came to chat with me and tell me I was wrong but not one of them could give me a reason why my leg was extremely swollen which was very worrying.

Well nothing changed untill the bank holiday ended and staffing levels returned to normal. At last I may get some answers as thoughts of losing my leg was starting to creep in and also knowing that a clot can be fatal if it breaks away and gets to your heart. A cardiac specialist turned up early with a mobile ultrasound device and went all over my hip area and guess what he found, a massive DVT. Things started to happen now but not for the best, I was already on warfarin for a DVT which came in the other leg while I was under sedation for a month so there was little treatment left to give but I was starting to black out due to bits of the clot breaking away and getting to my heart and lungs.

Next thing I was being raced up to an operating room in what seemed like a formula 1 bed where under local anaesthetic an intravenous filter was inserted down through my neck artery into my lower chest area to catch the bits that were heading to my heart and lungs. I was returned to ITU where I noticed an almost Immediate improvement in my breathing and general well being. This was a major turning point as even though it took me months to get back on my legs and home the improvement slowly came. The swelling in my leg took months to go away and even now still give's me a few problems but I will alway's remember the frustration of not being listened too when all the symptoms were so obvious even to a mere mechanical technician that it was a DVT!!!!!

17 Replies

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  • Tell me about it - my husband was diagnosed with COPD. I nursed my Dad with that - he had a very productive cough and responded to Ventolin to ease his breathing. Keith had no cough, and inhalers didn't help him. He was told they would if he used them - which he had been doing. For 18 months I queried whether he had fibrosis like his father (there's a hint), only to be told time and again he had COPD and no sign of fibrosis.Every time he was ill he was put on diuretics - then taken off because they dropped his blood pressure. I kept saying he was OK each time until he came off the diuretics, but no-one would listen.Eventually, he was hospitalised for his 5th pneumonia in 6 months - we were told he was aspirating food and that was the problem. They were at pains to tell us that he had Community Acquired Pneumonia - in other words he hadn't caught it in hospital. We knew that. Eventually he was told in the middle of the night to get his things together as they needed his bed in the admisson ward, he had to sort himself out, they told me in the morning not to read anything into the fact that he was now on a respiratory ward. I went straight in - to be told he was down for an urgent CT scan as they suspected fibrosis ! Which of course he has - end stage now, on oxygen etc. He had another exacerbation, which brought on angina , and we saw a cardiologist who said he could fix his high heart rate (103) with Ivabradine - and it doesn't lower the blood pressure, so he could take diuretics - hurrah ! We had a good few months, then another major exacerbation in October, since when we have involved the local hospice etc, a bit of future planning. It is frustrating when they won't listen !!!

    Gill

  • Totally amazed at your experiences. As a mechanic you had an idea of the cause of your painful leg. As a retired nurse, it was the first thought that came to mind, so why didn't the morons that were on duty suspect the same. Boggles the imagination and left you traumatised. In fact, I would have reported the whole business (but to whom). PALS comes to mind. (?Patients advisory laision service) It really annoys me that a patient should be left for the whole weekend with a life threatening condition. At least you survived the ordeal but have your memories. Curious as to the name of the hospital. I hope it wasn't Addenbrookes or the Lister at Stevenage. Favourite haunts of mine. Love Annie80

  • Its pretty shocking is'nt it that I diagnosed myself in ITU but as I said it was a Bank Holiday and the top people were just not around. Most of the people were brilliant with me over the 2 and a half month's I was in there but I'll never understand the amount of professional people on that weekend that just could'nt see what was right in front of them. All I can hope is that they also learned from the whole experience and never let it happen to somebody else. Its a shame you were not around at the time as it sounds as though you would have done a much better job of it. (It was Worcester Royal by the way and like all Hopitals they have very good and very BAD!!)

  • When hearing of your experiences I am surprised at how well you coped. I now consider myself extremely fortunate to have the the fantastic care I get from my GPs and consultants. My respiratory consultant even came in on 2 Saturdays to check on me. I survived because of, you survived in spite of. Well done|

  • I have no real complaint about the level of care on ITU in Worcs as they worked miracles to keep me alive. The consultants even nominated me to carry the Olympic Torch months after I had been home but no matter how good the majority were the few working that weekend did come far below the required standard and could have waisted all the good work that had been already been done.

  • What a horrible experience,I do hope you got some appologies along the way!! I always believe that you have to listen to your own instincts about your body,thank God you are still here to tell the tale! It could easily have beeen very different outcome.

    Congrats on coping so well!

    Love Wendells xx

  • It was a pretty awfull experience but I was so ill at the time I really did'nt care whether I lived or died. I've got to say that in my 4 month initial stay in hospital it was a roller coaster of high's and lows but that was probably the lowest point as I was really struggleing to breath and with this new problem of DVT's I really was on the very edge of the abyiss and would have happily jumped in if I could have. If anything good has come from me writing this blog it must show people that no matter how low you may feel its worth pushing on because things can change and good times can return.

  • My dad is currently suffering from a DVT. Thanksfull a quick bloodtest told him he had it as he had no swelling or hotness, just a pain in his calf. His stomach is a real mess from all the heparin injections my mum is giving him (with some glee I might add) on a daily basis.

  • I really dont get it. I was in the right place to be diagnosed and treated in ITU and yet that just did'nt happen. Why? I guess I'll never know now but it pay's not to dwell on these things and get on with living for the day. Will your dad be put on warfarin as that is the usuall treatment. I'm on it for life and seem to cope reasonably well.

  • He was on warfarin anyway for a while but came off it a couple of years ago. Oddly enough his sister had a dvt just a couple of months ago. It does sound odd that they just didn't do a blood test! I do expect dad to go back on warfarin.

    Marie x

  • Warfarin is fine when your INR is stable but at the moment mine is all over the place due to changeing tablets so I'm on weekly blood tests. All good fun :)

  • I too had a DVT my GP sent me to hospital, he rang them to say I was on the way so that I did not have to wait too long to be seen. Well, I was seen, by two doctors, then had to wait for a bed to be found, I waited, and waited, then at 2am after 9 hours sitting waiting, I was told that there was no bed and that I should go home and come back in the morning, they gave me codine, of which I am allergic to, but they said that it would help with the pain, I was violently sick after taking them, so in the end I stopped and went on paracetomol, my leg was very swollen and my groin was very painful. So I went home, could not sleep, and my husband took me to the hospital again. Having got there in tremendous distress, they sent me for a ultra scan, the nurse there said that I had a DVT and that it was an extensive area, she put me in a wheel chair and wheeled me back to the unit that sent me, she told them that a bed should be found straight away and a consultant should see me to admit me. Then finally, after another hours wait, I was seen by a consultant and immediately put into a ward. By then my breathing was very bad. I was very distressed as you can imagine, thinking that I might lose my leg. But thankfully that was not the case and I was treated with respect, the nurses and doctors were very good in the ward and the consultant came to see me every day I was in there. Wishing you all well and hope that things get better, for all our sakes.

  • I'm glad they sorted you out EVENTUALLY!, The mind boggles to why they sent you home on your first visit. I guess we are both lucky to still have our limbs in place and our lives to live. At least we know to be more assertive on hospital addmission and not to sit back automatically thinking the best will be done for you. Its not alway's the case it seems. We have both seen good and bad practice from the doctors and nurses but we'll try and stick with the good from now on eh' Thanks Ellena xx

  • Yes, thats true dall05, thanks for reply, its only our health they are messing with, more assertive, I like that......hope they listen. take care of yourself xx

  • I have been diagnosed with a DVT in my right thigh after 2 visits to A&E. Although i was given Clexane to inject the doctor at the 2nd visit dismissed me home with the advice that if i stared coughing up blood or had difficulty breathing i was just to go back (he was aware that I live a good 1.5hrs drive/ferry crossing away from the hospital). I was told to visit the DVT nurse on the Monday which I did. By then I could hardly walk and was becoming extremely concerned. When I arrived at her office she apologised but said that she could not fit me in for an ultrasound. i just burst into tears! however, after realising just how swollen both calf and thigh were, she pulled in a few favours and got me seen immediately where the scan revealed the clot.

    I am currently on rivaroxaban 30mg per day and have to return to DVT clinic in six weeks and was told to visit my GP, which I did.

    I was looking for some guidance about what I should or should not do. His advice was 'don't take up any contact sports and drive even more carefully'. I usually have a sense of humour, but I was very not happy with his attitude. Now a week later I don't have the foggiest who to ask for advice. I am self employed 59 year old woman. Should I push on as if nothing has happened or rest up?? Anyone help?

  • Hi Kate, I'm on the healthunlocked 'ACE' community site also because of my DVT. This is the more specialised site for anticoagulation. There are people on there who are far more knowledgeable than me to answer this. I would say keep moving and when you stop put your feet up if possible.

    Copy and paste your post onto the ACE site where I'm sure you will get some great advice.

    Tony healthunlocked.com/ace (click on this link to take you there)

  • Thanks for the advice. Will do as you suggest.

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