My story

[Alyssapeace]

Hi, my name is Alyssa I am 17 years old and a couple months ago my leg started to swell rapidly, the doctors later discovered that I had a blood clot DVT In my leg which was over 2 feet long, I was hospitalized for a week getting the injections in my stomach and started taking warfarin only 2.5 mg a day, a few days after returning from the hospital my leg started to swell and hurt again so I went back to the hospital, they found out that my clot had gotten worse and that I should have been on a higher dose of warfarin so I had to start the injections again and remain not going to school for 2 months, after a couple weeks the found out that I have DVL and may need to be on the medication for life and may cause complications during pregnancy in the future. Several doctors say I should be wearing the stocking on my leg and others say I shouldn't bother, some say I should eat green leafy vegetables some say I shouldn't ! Any advice would be very helpful.

[Lynneiow]

Hi Alyssa, I had a similar problem to you with a large clot in my leg, it went from my groin to my knee. This was in 2005, and like you, l had conflicting advice regarding compression stockings and diet. I have found that l get a lot of relief from pain and swelling when l wear a stocking so l couldn't be without them now. lf you decide to get one make sure you get measured by your hospital to ensure you get the right size.

The advice l was given regarding diet is that yes, leafy green vegetables can affect your INR, but as l am a vegetarian l had to get this clarified as these are a large part of my diet. I was told the best solution to this was not to change my diet and my doctor would tailor my Warfarin dose to what l ate. The best advice l was given is to not to change my eating habits too much and all will be well. Just remember that whatever you take in that is different to the norm - food, drink or other medication - can affect your blood, so get yourself checked out. Hope this helps, and do let us know how you get on. Lynne

[daisyd]

Hi sorry you are having such a worrying time. I have Hughes syndrome and had a DVT during pregnancy. It might help to look at that site on here for some answers, re pregnancy etc

xx

[DataOdyssey]

Hi Alyssa, sorry to hear about your DVT and general health situation. This is similar to what happened to me sometime between 2000 and 2003 - I had a DVT in my left thigh sometime in 2000. I went to my GP but at the time he didn't believe that I could possibly have a blood clot. He attributed my swollen foot to having played football (despite the fact I don't play football - but I digress). When the DVT was finally confirmed in 2003, I was referred to a Haematologist and Rheumatologist - as well as booked into an anticoagulation clinic. If you have been given compression stockings to wear, please wear them. I was measured out and given these to wear and I did - I realised that is was this, or permanently damaging my health. Yes, it WAS embarrassing initially (as a bloke), but I put that aside and still wear them to this day. My rheumatologist commissioned an investigation which revealed that I had Hughes Syndrome. This diagnosis was important - the cause of your DVT must be identified so that preventative treatment / therapy can be initiated. Make sure your GP refers you on so that you get proper support. Demand it if you have to. I hope you get all the support you need and deserve. Take care.

[Alyssapeace in reply to DataOdyssey]

They did find out why I had my Dvt I have factor 5 and I was on estrogen , I am currently wearing my stockings and I have found them very helpful

Reply to this

[daisyd]

Clotting event and hormone medication ? Ok

[Alyssapeace]

I was on estrogen for my birth control, I wasn't taking it as medication for the clot. ^