The ticking time bomb went off

So it's been an interesting Christmas break. I would like to first start by saying those are not my legs but will illustrate the story I am about to tell.

Back in July 2008 I developed Thrombophlebitis (thrombo-flea-bite-us) in my calf, its blood clots in the surface veins to you and I, there were 7 of them. About 10 days later a DVT (deep vein thrombosis) developed in my upper thigh the size of an egg. This was alarming because 1) DVT in women under 40 is not common and 2) above the knee is very very bad. I was treated by the anticoagulant clinic for 6mths and it dispersed leaving scar tissue.

Because I'm under 40 I had something called a thrombophilia screening to see if there were any underlying causes of my DVT and it was discovered I have a genetic disorder with my blood called Factor V Leiden. My family were also tested and my Mum is the carrier. To save getting too technical, it means that i'm at a higher chance of re-occurring clots but the decision was made not to continue warfarin treatment (aka rat poison) because the clot was taken care of - I just had to inject my stomach with awful injections before flying and hope for the best that another wouldn't develop but know that it could.

Well yes, the ticking time bomb went off on Boxing Day last week. It was in the evening and we were having a late dinner, my legs were feeling really heavy and I was uncomfortable. I got an almighty sharp pain in my calf and I winced almost to the point of tears.

I knew.

I was a good girl and measured the size of my calf, it had ballooned an inch - I keep a check on what is "normal". Dad got me in the car and we headed to the A&E as quickly as we could and were told the wait was up to 5 hours. How fun. The best part of the evening was the drunk group having a bitch fight.

It was funny seeing the triage nurse because I could tell her what was going to be done to me as I've had three scares in the space of 12mths. I had a lot of blood drawn to have a test called a d-dimer which measures the clotting factor in your blood. Everyone has a clotting factor, its a number, and above a certain number indicates a clot. I don't remember the digits but was told "it's raised but its not too high" but because of my history and my genetics they treat it as if i do have a DVT, its the safest way. After 6hours, Dad and I finally got home at 3.30am.

Now, I am not particularly enamoured with needles, I hate the little buggars but the one good thing to come out of this latest saga is that I have been doing my own injections. The way a suspected DVT is treated is to have a daily clexane injection in your stomach until a scan is had. The only way I can describe the injections is that they burn like acid for about 25mins. But I did them, 6 of them. Last time I had 13 so I consider myself lucky!

Eventually on Thursday I got my doppler scan. Its a bit like an ultrasound with jelly but it sees the flow of blood. I'm fascinated by it. I clearly remember the one in my thigh being found. So this time i'm lying on the bed with my jeans in a pile on the floor and tissue paper in appropriate places. The jelly gets squired on and its cold. The scanner has to be held down quite firm and it can be painful. The technician says everything looks normal in my groin and thigh (phew) and makes her way to me knee and that looks good...but...then...down my calf....oh shit (my words not hers). There we found 2 giant DVT clots that total about 6" in size totally blocking my blood flow.

Now, last time this was about the point I broke down in tears and sobbed - I was supposed to fly 3 weeks later to Vegas to be maid of honour for a friend and wasn't allowed to fly. This time, I just sighed and was like " well lets deal with this then". What's the point in being angry or upset? It's not my fault, it's nothing I've done wrong - shit happens right?

So next we had to get to the consultant and she is lovely, I remember her from last time. I got my warfarin and a few more injections and the return of the seriously sexy stockings which i get to wear for 2 years. They come in white, black and the ever-so-neutral 'biscuit' colour. I've been to the hospital every day since, to have my INR (International Normalised Ratio) test done and adjust the levels of warfarin. The INR is like a staple gun in your finger tip and a blob of blood is put on a stick to measure the level. Everyone has an INR, the lower it is the thicker your blood. My ideal range is 2.5-3 and the first test was 1.4. Its getting better/thinner though. Today I go to the warfarin clinic to get my yellow book and all the bumpf I need to read - been there and done that already.

So why did I get another clot? Well, think of the factors of DVT as a triangle. In one corner you have clotting factors - mine is raised because of the FVL. In another corner is 'flow' as in are you sitting down all day long which can cause a clot, and finally is 'vein damage'. This time I had 'clotting' and 'vein damage' as there is a lot of scar tissue from my previous clot.

What does this mean now that I permanently have 2 out of the 3 risks? Well I will be on warfarin for the rest of my life. This is a good thing because it will hopefully stop the paranoia I have about getting another one, and I wont have to do injections before I fly anymore. But there are negatives too such as not being able to walk into a chemist and buy something over the counter in case it conflicts, never being able to have an aromatherapy massage as the oil can get into the blood flow, not allowed to drink cranberry juice or eat green leafy vegetables (this one is devastating to me - insert extremely sarcastic tone as I hate green leafys). But there are more personal side effects too like my hair may begin to fall out (it did this before), I don't have much of an appetite and my energy levels are through the floor. I am hideously exhausted. There are more personal issues too, but i'm not getting into those here as I need to process those.

So, it hasn't been the best of Christmasses but there is no point me being sad or upset at myself. My body has let me down once again and this time the effects will be long lasting, but worse things could have happened. If the clots dislodged themselves and travelled to my lungs, I wouldn't be here to write this stupidly long blog post! - Aren't you lucky!!!

I will probably blog a little more about my DVT over the next few months as I go through treatment so if you have any questions please do ask!

Wednesday, 5 January 2011 | 8 Comments


Unknown said...

Hugs...I am very glad that you are here.

Anna F said...

I feel really bad for you. Hope you're not in too much pain.xx

Kitty Ballistic said...

Oh goodness, you poor thing. *hugs*

By the way, where did you post the link for your special 'challenge' from Plurk? I have been giving it some thought... ;-)

bluetina said...

Poor Victoria, your body is letting you down at a very young age! It's not fair, is it? Mine is falling apart too but then, I'm nearly 60.

Anonymous said...

Bless your heart and your spirit, V! Love-Em :)

Linda McMurry said...

((((HUGS!!)))) Okay my dear Victoria, let's get ONE thing clear: your body is NOT "letting you down." Purge that thought from your mental paradigm of yourself. Your body is CHALLENGING you, not letting you down. The challenge is for YOU to figure out how to overcome it, and rise above it--which I have complete confidence that you will do! You know I love 'ya! --Linda

eclecticgayle said...

just came across this blog piece by accident and it sounds like what may be happening with my legs,tho' mostly my right one....but,I am also diabetic and circulation is a big concern....thanks for being so open about this problem...

this is a challenge for you and I wish you all the best,my friend

big hugz,gayle (artisangoodsbygayle)

Tami Abiuso said...

Wow, I'm sorry Victoria that you have had to go through this. I'm very glad you are getting treatment for it. We need you! Perhaps down the road there will be a gentler drug available to treat your condition.

One of my friends teenage daughter will also be on Warfarin for the rest of her life. She's had 3 open heart surgeries already, and more are likely in her future. It's a tough drug to take, but the flip side is without your future health risks are too great, as are my friend's daughter. We just want you to be healthy and happy. I think you are very brave and an inspiration! Hugs to you! ~ Tami (essensu) A.K.A. The Holistic Diva

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