This is a weird one. I have had 4 DVTS's in the past. This one being my 4th. Actually it should still be my 3rd but I will explain. My mother who I have no contact with has had them all the time. So has my uncle her brother. I got my 1sr one when in 2004. I was around 20 or had just turned 20 maybe the end of 19 I'm not quite sure. Then I got a second one in 2005. I was pregnant was only about 6 weeks pregnant and had known my partner a few months as I worked with him. Yes I know. However 9 years later and we are still together. And I phoned the ambulance as I could not walk properly knowing from the first time the symptoms. However these symptoms were worse. I could not breathe. There was a pain in my chest all over and the breathing was fast. I was scared. I was admitted to a ward to get checked over the following day and got a heparin injection until so. During that night I started bleeding knowing that being pregnant and bleeding was not a good sign. The blood clot was completely ignored and I got put to the maternity wing. I knew I had lost the child. There was no heartbeat however they said nothing. A doctor came in and said you have lost the child. Thinking I would be kept in my auntie took my clothes home to be washed. Then a jr dr came in. Said I was young it would come out naturally even though I protested while in mourning I could not walk my breathing was off and my chest was sore. He checked me over with a clean bill of health but no tests just listening to my chest etc

My dad then had to come and give me a lift home. At that time since I was 15 I moved out of my mums. Not going there and moved into my dad's and when I was older my dad's parents my grandparents which I lost one to cancer aged just 60. They had my dad very young. And my dad had my very young. I was once in the hospital and asked if my partner would like to stay with me while getting a toe nail off my dad was on a high that he looked that young. Me not so because I was 15 however very mature and got away with a lot of stuff as teenagers do. Until I moved in with my dad that is. Until I realised I had two paths. The life my mother was living or the life my father was living who found out just the type of person she is and filed for divorce before I was 1 and looked after my 3 months while she was in care and she still won me in court.

Anyway all I did was lay in bed my grandparents were away on holiday. I knew my granddad had some strong painkillers that had codeine in them and I took them. I could not go downstairs for the loo I could not keep anything down or eat. My grandparents came home and thought I was moping until they tried to get my out of bed. The dr visited which was a different surgery than mine he said I had a fever it would go away. As my symptoms got worse they phoned him 2 hours later and he put me straight to hospital I had to be put on a chair. I was in hospital for 4 months. I had bacteria in the heart valve. Kidney failure. pneumonia, septicaemia which is why I could not keep anything down. Any drug they had to give me was IV even paracetamol. I had a feeding bag. I had clots in my legs and in my lungs. They tried everything. I told them about my miscarriage but they never seemed interested. Until one night one dr suggested to get my notes. He noticed I was not cared after that the dr said I was frantic that things would come out natural. This was 3 months in. I remember a lady sent from maternity examining me saying that I still had the sack in me. That parts of the remains had broken up and travelled all along my body which is why I had so many illnesses all at once. I had to sign a form to get put to sleep for a couple of weeks to give my lungs a break and a dnc etc I was not with it. I was fed up of the pain. To be honest when people came in I would be away with it talking nonsense. I remember telling my partner who I am due to get married to that I wanted to die to get rid of the pain and to stop coming up to see me all the time. We went out and I fell pregnant you are 12 years older than me being 20 at the time still. Your job is done you don't have to pretend to do the right thing. I remember him saying I am here because I want to be here. I'm here so I can get my girlfriend back. I dismissed it. I could not see things getting any better but my death and I did die. In the operating table 3 times. They had to take me out of sedation as I kept crashing. Anyway once the op was performed I remember feeling a lot better the drugs worked the bacteria which on the echo looked like a bit of broccoli and it went down massively went away. No artificial heart pieces which was good to hear. I got out a month later. With heprin injections and a sin bin I was left with a unusual heartbeat was told to take them all my life. I was very lucky. Got out early dec 2005.

I was allowed to go to the works night out. Which I did. My daughter was conceived that night. I was told to abort I could not have children for 3 years as this pain I was still getting would be there for a few months. I was taken off the heart tablets. I was never put back on them no matter how much I have fought. The drs could not see them on my notes. The reason for this was because I was sent home with so many pills. Paracetamol. Dihydrocodeine. The heart pills. That I would not have to strain myself to go to the drs all the time to get these things. So it was never on my medicine list. So now I have to live with what I call a butterfly heart. My heart skips a beat. I take it a huge breath and when I do it goes away. Even my consultant said you should sue the maternity department. Which is unlike a dr to say that. However I was just happy to be me again and bubbly.

All was fine until my daughter who is now 7 will be 8 in sept. 10 days late she was. Did not want to come out yes I had a hard pregnancy and the maternity after getting a written apology. So I would not sue had me up there every month. It was a difficult pregnancy at the end. And she was born not breathing and with the cord round her neck. We wanted him to snip the cord my gran was meant to be in with me. And I was talking this year of having another one and my partner told me he had said the drs in the room which were loads he heard them talking the baby or the mother. He said whatever that means. We should be happy we had our baby and leave it like that. I agreed. Even though I do long for one.

Anyway in 2013 my daughter was ill I was up 2 nights running he had the weekend off I was asleep 12 hours sitting up and got a blood clot. Was prescribed rivarovaxban. Got stockings which never fit me even though I got a Doppler and fitted I have to fold them down a bit and they roll down. I bought suspenders lol and realised I needed 4 strings after making to small holes in them which are hard to find.

I kept getting sore legs at different times. One day I would be fine the next I would be sore so went for a ultrasound and they said the clot is healing and everything was fine. Which it was not I was In pain and could not sleep in certain ways

In 2014 I went to the dr 4 months ago and told her one who would actually listen and got back on them before after I finished my coarse my legs were so swollen and the top of my thigh would jiggle like it's doing now. I ended up talking advise about a infection in a nail I had a few years later and each night would wrap manuka honey all over my pale white leg and bandage it compared to my other pink leg after a week of doing that the swelling went down. I only thought of it as it did get rid of a nail infection. Now my rivarovaxban has ran out. I phoned to ask for some more and ended up getting different tablets Instead. I thought if I phone up as they were on repeat prescription that maybe I would not have to go through all that again and the dr would just prescribe them. However I have a feeling I'm going to have to fight. I see this as a recurring one who won't go away. It was not until I fought that I got that second ultrasound and was put back on them. I know it was the same blood clot as I was in pain as I am now that I have finished the coarse. Now I think I need to fight again. This time though nobody is listening to me.

I have been taking 75mg of asprin. Keeping my leg elevated and wear my stockings as long as I can stand the pain for.

Is there anything I can do that I have not been doing. As you have noticed the drs have not listened to me in the past I know my own body. last time they thought I was being paranoid they were found out wrong. I phoned the dr. I'm going away on a non refundable but only for 5 days holiday. Phoned the receptionist to see why I got different tablets. Told her I was going away on Sun she said someone would phone me back. Or that she made a note of that. It's the only thing I can think of as each dr I see apart from one asks is my tablets long term or short term. Even another 3 months on them would make me feel safer.

I'm so sorry for the huge post. However I thought it best you know my history. However other parts could have been left out but I'm a talker I can't be brief my one bad habit.

If anyone knows of anything other than asprin and what I mentioned above to keep a blood clot at bay or maybe help with this recurring one I'm all ears as there is not a lot of support on the internet like the one like mine. Most drs listen.

3 Replies

  • Gosh you have been through an awful lot you really need to actually sit down and talk to your Gp

    If I were you I would make a list of your medical problems,in date order such as 1, 2 etc probably getting towards the hundreds I should think, also add which medications you were taking at that time symptoms.

    I think Doctors are very bad at reading past notes in files and rely on information you give, making lists I think helps, just medical diagnosis medical problems medication etc.

    I have been though an awful lot too although not as much as you that would take some beating, I found it really useful to write it all down everything including personal history, feelings,

    I think that really helped me, I keep it at home, but it's up to you you might need it in the future if you decide to sue.

    I have Hughes syndrome, sticky blood it's on here might be worth taking a look

    I think that's all but as I have a poor memory now, read your post twice,

    Please let's us know how you get on really feel for you, sounds like you have been really brave

    Good luck

  • Hi Sam,

    I have had a couple of DVT's. The second diagnosed with ultrasound scan this week, via a consultant, having been ignored by the GP. I think the suggestion (in the other reply by Daisy) about writing things down is a good idea, as therapy and in case you need the information for future clinical care and possible legal action. The traumatic events you have been through are bound to have taken their toll on you mentally and physically. Some counselling might be useful if you can access it. In response to some specifics:

    1) I would ensure that, if your blood clot is still current, that you get the correct prescription of riveroxiban for the duration that you need it.

    2) You should normally stop taking aspirin whilst you are taking riveroxiban, or similar unless there are specific reasons to continue.

    3) There seems to be a reticence to make use of ultra-sound generally. I don't know whether it is cost or other clinical reasons. I would push to have it for diagnosis and to establish current condition when you get the chance.

    4) I wear a compression stocking. Initially Activa, which were OK until they changed the design - a more comfortable top welt - when they then kept falling down. Then Altiform which had the same problem. The pharmacist suggested Haddenham. A made to measure, rather than just a standard sizing of S,M.L etc. - High quality, made of a thicker material, firm and tight and never slip down, but more difficult to get on and off. Much more expensive therefore you may have to push to get them on NHS prescription, but worth it in my view.

    Good luck!

  • And the policy of my hospital, and I think generally, is that after the second DVT you would be prescribed some kind of anti-coagulant - riveroxiban or similar, permanently.