Warfarin 'lifers' after DVTs
Haidee wrote over 3 years ago
Hi everyone, I'm a 34 year old female from New Zealand and new to this site.
I had my first DVT in my left leg from my toe up to my IVC (second biggest DVT the Haematologist had ever seen) with a bilateral PE in my lungs in 2006. This DVT was provoked by being very obese at 170kgs and being put on the pill due to Polycystic Ovarian Syndrome.
I had a second DVT in the same leg in 2007 (in my 20s I decided Warfarin was too much of a hassle and stopped taking it) - yes I'll completely take the blame for that DVT and regret not listening to the doctors back then.
Following these DVTs I was genetically tested for all the clotting factors - all came back negative. There is no history of any clotting disorders in my family either.
In 2008 I had a gastric bypass and lost 100kgs and was taken off Warfarin and advised that unless I had any other surgeries or became pregnant my risk of further DVTs was very low.
Fast forward to May 2016 and I developed a third DVT in my left leg following some weight gain and a 1.5 hour flight.
My leg veins are a complete mess and most are completely blocked. My body has grown collateral veins to now carry the blood flow. Doing ultrasounds on my leg take an hour plus due to the web of veins in my leg and things not being 'where they should be'.
I've been advised that I'm probably going to need to be on anticoagulants for the rest of my life. In New Zealand we have two options - Marevan Warfarin and Dabigatran.
I'm an active horse rider and currently on Marevan Warfarin because I know it can be reversed quickly with a Vit K injection if I should ever fall and start bleeding internally/externally. However I know the risks of taking long term Warfarin are not great and having to go to a lab for 2-3 times a week blood tests are annoying.
I've been told Dabigatran is harder to reverse (anywhere from 12 hours to 7 days) and as it is still a new drug on the market, no long term research can be done to know the effects of long term use. But on the positive side - no more INR testing.
1 - Are any of you taking Dabigatran?
2 - Do you have any experiences on how long it took to reverse the Dabigatran if you did have a bleed/needed surgery etc?
3 - Given my high risk activity of horse riding do you think my doctor and I have made the right call with sticking to Warfarin?
4 - Have any of you had more than 3x DVTs and managed to not be on lifelong Warfarin - how did you get around this?