Looking for advice on what to do when DVT is confirmed.

[shazaroo]

I was diagnosed with a dvt yesterday (Thurs). I was given a little pack with my stingers to inject and told to come back Monday for a Doppler scan. I must have been on shock yesterday because I only asked one question, and that was would the clot break off and travel. The nurse said that the jabs would prevent it doing that. Today, I have come to my senses and realise that I don't know if I need to be doing anything special, e.g. to exercise or to rest . I know this sounds daft but at the mo I feel like I don't want to move in case the clot moves, so I would appreciate any advice.......thanks in advance.

[willowgirl]

hi, times must have changed big time since my first one..........sent home with just injection????? were you given one at the hospital, ?????? have you got the thick stockings? sorry not much help but i would not be happy with this. you should certainly have been given better care, all i can suggest is go back and say your not happy, or stay home and rest, elevate your leg and take paracetomol for any pain, someone might come on with better advice , i wish you well, let us know what happens xxxxx

[jaxta51]

Hi shazaroo, it's not daft at all - I was diagnosed in April and felt just the same. I knew nothing about DVT and couldn't believe what was happening to me. Like you, I imagined the clot moving with dire consequences... And I was given conflicting advice, the DVT nurse said exercise "little and often", the doc said rest. The best thing I did was what you have done - I found this site and voraciously read what other people had felt and experienced, which made me feel much less alone.

You don't say where your DVT is or what caused it to happen. Mine was in my leg which was quite swollen. I found it helpful to keep my leg raised whenever I was sitting or lying down. I've raised the bottom of the bed with books (knew that volume of Shakespeare would come in useful one day) and also sleep with 2 pillows under my leg. I also waggle my foot around when I'm sitting or lying, uo and down and in circles. It helps to keep the circulation going - try not to worry about the clot - and was the first exercise my Physio gave me when I eventually persuaded the consultant to refer me (my clot came about due to a fractured foot so I needed physio to get moving normally again). Two months on, the swellling has nearly gone.

I went with the nurse's advice and made sure I got up and moved about regularly, just normal things like making a cup of tea or going up and down stairs to start with. It's very early days for you so take it easy, but don't be afraid to move. My nurse told me she'd never had a patient with a clot that moved in 10 years of doing the job which was very reassuring. I also knew it was being immobile that caused my problem in the first place so gentle exercise felt like a good idea. Now I take regular exercise walking the dog, and can walk for an hour or two without ill effect.

Everyone is different and you will need to take the advice of your own medical professionals. However it's good to know there are other people who have been there before and who are getting on with life! Best of luck and keep reading the site!

[shazaroo]

Thanks so much willowgirl and jaxata5. willowgirl, I did have an injection of the Fragmin and the 3 others to take me up to Mon when I have a scan. I wasn't given any stockings, no advice or anything. I will be asking about the stockings though on Mon, just hope that I see someone on Mon because I haven't been told about any follow up appointment.

Jaxata5, I don't know where the clot is because I don't have a Doppler scan until Monday am......it was a surprise to find that I had to wait 4 days until I had a scan. I just don't know why I didn't have one that day or the Friday but that's health cuts I suppose! When I went to my Drs on Thurs, my leg was swollen and felt like a dead weight up to my knee. Last night I could feel the dead weight go further up my leg to about 4-5 inches above my knee. This morning, my leg up to my knee seems to be less stiff but I still have the 'dead leg' feeling above my knee. I am hoping that this is a good sign and that the clot (maybe in the calf) hasn't moved.

Thank you both for your advice, I really appreciate it and will let you know how I get on.,,,,,,,x

[Cathyc]

Hello there,

My husband was diagnosed as having a dvt in the top of his leg in April. It was on a Friday, & he was given heparin injections for a few days (including the Saturday and Sunday), and also started on warfarin (10mg I think - but he is now down to 3.5/4mg depending on his INR). His lower leg/calf was swollen & painful, but this receded about a week after he started the heparin/warfarin therapy. He was told that the heparin/warfarin would thin the blood, so reduce the risk of more clots forming, and that the body would disperse the original clot over a period of time. (We were subsequently informed by a family member who is a relevant health professional that this could take about 3/4 weeks). He was not given any specific advice about exercise/rest, so carried on much as normal (he enjoys quite long walks), but elevated his leg whenever sitting, and used a couple of pillows for his leg at night for about a week/10 days. It took about a week to get the prescription stockings, as he had to be measured etc. by a nurse who had been specifically trained re prescription stockings. Lots of blood tests were taken at the time, and he is seeing the consultant haemotologist in July (i.e 3 months after the diagnosis/commencement of treatment). Meanwhile, his INR is being monitored at out GP surgery. He is fine now, and we have just got back from a long distance walk in France.

Hope this helps. All in all, we feel our treatment etc. has been OK!

[Rousseau]

I was interested to read these responses. I was diagnosed with a suspected DVT by my GP on 4th June and told to go immediately to hospital A & E where I was given a d-dimer blood test which showed a likely DVT and immediately given a heparin injection in the stomach. I would have had the dopler scan that day but there were no slots. I had it the next day which confirmed a DVT in the back of the knee on my right leg. Following my questions about severity etc. I was offered a copy of my scan results. I was later told that the DVT was in the popliteal vein. I was told that I needed to go on warfarin for 3 months which would involve regular blood tests, daily for the first week and subsequently less frequently and that I would be referred back to the GP for fitting of compression stocking (which arrived a few days later) I was told I needed to wear the stocking during the day and take it off at night, for a period of 2 years. As with others experience, I was alarmed at the urgency of everything and of the danger of the blood clot moving which could be fatal. Over the course of the past 3 weeks I asked the GP, the A & E doctor, the DVT nurse and the haematology consultant what regime - diet exercise, rest etc - I should adopt. I was told by all of them to carry on as normal. I explained that normal for me is cycling (up to 100 miles a week) gardening, walking, swimming. They simply reiterated that I should carry on as normal. I understand that not so long ago DVT would have been treated with hospitalisation and enforced bed rest. I think the evidence (perhaps coupled with a shortage of hospital beds) has led them to conclude that bed rest seemed not to have any influence on the risk of converting a DVT to a pulmonary embolism etc. so the policy has changed. I resisted the warfarin treatment because I have a phobia about blood and needles and was eventually told that there was a new drug called riveroxiban (available in my health authority for the past 6 months but has been used in the US and Australia and some other countries for longer. It is not that much more expensive than warfarin according to NICE but the main disadvantage is there is no simple antidote for an overdose. Excessive bleeding with warfarin can be stopped very quickly with an injection of vitamin K. Riveroxiban acts slightly differently than warfarin and does not require any blood tests for INR monitoring. I saw the haematology consultant (necessary to prescribe this new drug) last week and I am now on riveroxiban for 3 months - having in the meantime had to suffer almost 2 weeks of daily heparin injections into my stomach - so my strategy for avoiding needles wasn't very successful! However now all I need to do is take the tablets and wait and see. I have been told that there is no re-scanning at the end of the treatment. The drugs should abate the risk of PE and my body should naturally disperse the blood clot. Absence of re-scan I would think is a cost/benefit decision and not very satisfactory because i will always be wandering..... But generally I am satisfied with the treatment I am receiving and the health professionals that I have dealt with. With regard to Shazaroo it seems to me that your situation could have been handled better, but I think the 'vagueness' surrounding DVT is partly because it is an inexact science. They simply do not have all the answers. Much of the basis of treatment/advice - exercise/no exercise and the prognosis etc.- is still partly guesswork based on probability having studied the outcomes of previous patients. My advice is to do some internet research, ask as many questions as you can to health professionals and anyone who has had a DVT and then make a judgement as best you can. Good luck!

[bilnibis in reply to Rousseau]

hi rousseaue.,,glad youre doing well...what were your symptoms before you wee diagnosed by your gp?

[jaxta51]

There certainly seems to be variety in the advice we receive about exercise. I had quite a struggle to persuade the fracture doctor to refer me for physio, because of the DVT. However I do think the physio was very valuable because it gave me the confidence to get moving again which I believe benefited both recovery from the fracture and the DVT. I''ve searched the web for research on DVT and exercise and found a couple of studies that indicated that people with DVT recover well, and avoid further complications, when they take regular exercise. Of course, everyone is different, both in their specific medical circumstances and their lifestyle choices. For me, as a previously reasonably fit person, returning to regular dog walking duties has been helpful in moving on my recovery. As I am fortunate to live on a headland with many steep, rocky paths this is more strenuous exercise than you might expect and the leg which had the DVT does get "tired" and feels heavy but I find I'm "good to go" again after a few minutes sit-down rest.

I feel there is a real need for more research into the basics of treatment, such as exercise, the efficacy of stockings etc as the professionals seem to offer such a variety of advice but I guess it's maybe not an exciting area for researchers when there's so little money about. At least by participation in discussion on sites like this we can start to produce an evidence base in the hope someone will take the issues on in the future.