My journey with Factor V so far

This is a very long overdue post. As in about 8 months overdue, oops! I finally found out last November what the cause of my blood clot was. I have Factor V.

It was quite¬† a long, drawn out process to find out the cause but I’m so glad now that I know. I finished my course of warfarin in March 2017, 6 months after my diagnosis but it still took a while before I could get any answers. I needed a referral to the haematologist but they needed the warfarin to be completely out of my system before doing the tests. Apparently this takes 3 months so I had to wait until mid-June before this was possible.

Of course it’s always more appointments than you really need with the NHS and always delayed as well so it was midway through June before I got my first appointment which was a 5 minute quick consultation before giving me a form and being told to go to the blood test clinic which is open 5 days a week in the same hospital. The clinic was so busy however I’d had to go after hours to some special sessions so I couldn’t just head straight down to the blood tests and had to go back after the weekend.

I’m not good with needles though after having the clot I’ve gotten much better; having to go for injections daily for a week straight and then dealing with 6 months of finger prick tests you definitely improve! I still wasn’t great with the blood being taken though and particularly as they had to take 5 vials of it. I then had to wait 3 months for them to do all their tests and get the results back. Finally in November I had my results and it turns out I have heterozygous Factor V; a genetic mutation. This is the ‘mild’ form of it as it’s heterozygous which means only 1 of the pair of genes is mutated. It does however mean I’m more likely to clot than anyone with the normal genes. I’m more likely to as well simply because of having one clot already.

So this does affect my life slightly. Due to it being the mild form I don’t have to be on blood thinners for life, although I assume if I was to suffer another one I probably would be. It does put limitations on my medical treatments however. I can’t have any estrogen based treatments, so that means no hormonal contraceptives or hormone replacement therapy of any kind. If I ever have to go for surgery I’ll have to have blood thinning injections beforehand and the same if I go for a long haul flight. I’m combining this with my regular movement trying to get up and walk around every hour plus bringing my weight down to completely minimise any risks of another clot.

Overall I’m glad that there was a reason in the end. I had been debating through the whole journey whether it would be better or not but at least now I know it’s nothing I did or could have prevented. It’s just one of those bad luck things that occur when you get your genes. Luckily I have no siblings or children so no one else who would need to be tested; for some reason the hospital didn’t bother to ask about my parents but one of them must have the same thing to have passed it on to me. Of course I have told them but neither of them has considered getting tested; possibly due to their age as they’re in their 70’s or possibly because there has been no family history prior to me so they don’t see it as being worth doing.

This doesn’t mean my journey is over of course. I’m still hanging out on the NCBA forums though less so and am keeping up with all blood clot news. I still suffer from aches and twinges in my leg daily. I have 3 more months of wearing compression stockings. Every feeling that isn’t normal sends me into a mild panic of ‘what if it’s another’ but you learn to live with it. I’m still learning my new normal but I’m getting there.

 

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