Monday 12 May 2014

Life after a blood clot: Post-Thrombotic Syndrome

Put your feet in the air
"Put your feet up"
Today's post is something a bit different for Little Apple Tree.  I don't normally post or talk much about my health as that could, frankly, get more than a little boring.  I could go on and on and on and on... You get the picture I'm sure!

However, between today's Blog Every Day in May topic which was "Walk to Work", to which I snorted with laughter, and a chat I had with the very lovely Lucy from London Loafing (you should go and read her blog right after you finish reading mine!) about my dodgy leg where she said, "I had no idea about any of this" and "you should post about that," I thought that I would.


In May 2012 I discovered that I had another blood clot or deep vein thrombosis (DVT) in my left leg.  I've had a few false alarms over the years since I had my first clot back in 1998, so I didn't think anything of it.  It was a pulled muscle, it would be fine.  Except it got worse rather than better, so I dragged my leg along to the GP.

Ten minutes later I had a positive finger prick test and an appointment for an ultrasound to pinpoint exactly where the clot was in my leg.  I was also absolutely in bits.  I sat in the carpark and sobbed for twenty minutes.  You see, this wasn't my first clot.  I had one in 1998 just after I graduated and I wound up in hospital for two weeks.  How on earth would I cope with that now?  I had a kid!  What about the school run?  What about anything??

I pretty much cried my way through the next 24 hours and then cried even harder once the clot was confirmed.  The only thing that stemmed my tears slightly was hearing that blood clots are now managed within the community rather than as an in-patient.  Sure, there'd be daily trips to the clinic for a few weeks, but that was a million times better than having to stay in hospital and cause massive disruption.

I assumed, like I guess everyone who has heard about DVTs, that I'd take the medicine and then I'd be fine, just like last time.  Not so much.

Fast-forward a few years: today, after an awesome weekend in London at Blogtacular, I am hobbling around and dragging my left leg which is a bit uncooperative.  It's swollen and tender to the touch, to the point that I have swapped my keys and phone around so that no pointy things can jab me.  It's pretty pathetic, actually. The mere whisper of the fabric of my jeans over my thigh stings and walking Lucas a couple of hundred metres to school hurt.  Now you see why I laughed at the "Walk to work" topic!

My blood is super-thin at the moment, a little thinner than it should be actually, so there's no fear of another clot.  So, what's going on?

Well.  If you've had a DVT in your upper leg you are at increased risk of something called Post-Thrombotic Syndrome (PTS).  If you've had more than one DVT, your risk increases dramatically.  Lucky old me.  I'm going to try to explain with an analogy.

Think of your blood vessels as a road system.  Your deep veins are the motorways. They're wide and can carry a whole load of blood back to your lungs for more lovely oxygen.  Every so often there's a slip road which where small veins join up and dump blood from extremities like fingers and toes into the main motorway.

If there's a crash on the motorway, what do all the cars have to do?  Find alternative routes.  And then, those routes get overloaded and your day goes to hell.  It's just like that with a DVT.  The blood can't get back to the deep vein, so your body cleverly sends it down alternative smaller veins which can then become damaged in turn because they're not used to dealing with such big volumes of blood.

To add to the blood transport woes, the tissue surrounding these small and now overworked veins can also become damaged and highly sensitised.  This has knock-on effects on little things like the skin, for example.  The skin on my left leg looks peculiar compared to the right.  There's obviously something not quite right about it.  I don't mind that very much as I've never been one for skirts, but if I get bitten by an insect or cut myself, then it can take months to heal.

Sadly, a DVT can't be cleared as easily as an accident on the motorway.  Warfarin treatment doesn't drag the clot out of the way like HATO drags cars to the side of the road so that the motorway can flow smoothly again.  It takes months of treatment to dissolve the clot--and I've never had a straight answer from specialists as to whether the clot actually dissolves or is absorbed or whether the blood is simply made thin enough to slip past it--and get things back to normal. Or a new normal in my case.

The frustrating thing about Post-Thrombotic Syndrome is that it can strike at any time.  Sometimes I go into a weekend away just knowing that my leg will be shafted for the week afterwards due to loads of walking, queuing, sitting still in the car for hours and so forth, but other times I can sleep ever so slightly 'wrong' and wake up to a swollen and unhappy leg.  It does limit what I can do sometimes and I often feel very guilty when we're out having an adventure and my leg calls a halt to things way before I'm ready to go home.

A few tips to make life a little easier

  • Drink plenty of water and stay hydrated
  • Gentle stretching every day helps a lot; I try to stretch first thing in the morning when my body is warm and relaxed
  • Exercise.  It's a dirty, dirty word in my book, but I can't deny that when I was going to the gym regularly I had zero problems with my leg.  I walked 9 miles around London one day and the only pain the next day was on my heel where I had a blister.  
  • Don't sit for long periods without a break.  Duh!
  • There's no shame in sleeping with your leg up on a cushion if you've got some swelling or aching going on.  I've been known to nap with my foot up on the wall on occasion.
  • Don't scratch your leg if it itches!! 
If you think that you're affected by Post-Thrombotic Syndrome then you should make an appointment with your GP.  Be prepared for them to have never heard of it--my rather young GP hadn't, but the senior partners at the practice had--and explain your symptoms and ask for a referral.  Some Primary Care Trusts won't bother bringing you in to see a specialist and will simply diagnose you by letter (mine did), but others will take a keener interest.  It is, as with so many other things, a postcode lottery, I'm afraid.

Lifeblood, the thrombosis charity, has a useful PDF on Post-Thrombosic Syndrome 

If you want to read another blogger's experience of DVT, Bee has written a fantastic post which focuses on the diagnosis and treatment of a DVT.  I was about her age when I had my first clot.  DVT can strike at any age and you certainly don't need to be on a plane to get it!

I hope that this post helps you understand why friends or family who have suffered a DVT aren't just 'bouncing back' or perhaps makes you, yourself, realise that all these little niggles you still have after your DVT really are something and you're not going mad or suffering from hypochondria!

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  1. Yeesh that sounds pretty damn horrific. It never fails to amaze me at what some people, many of us, normalise and trudge on through (that sounds punny, it was absolutely not meant to be!)

    Thanks for sharing Ang, something that many people might not be aware of and beautifully put across as always.
    M x

  2. Thanks, M, you're very sweet. Yes, it's amazing how quickly you can adapt to a new normal (while hating every second of it). Hopefully this post will reach at least one person who is sitting at home nursing a randomly swollen leg and freaking out...

  3. At the risk of sounding like Oprah Winfrey, thanks for sharing Ang. Health is definitely a thing you take for granted until you don't have it any more... I never knew how bad the after effects of a DVT could be. I hope things improve...with a little gentle exercise (you know you can do it!)
    Also - lovely to meet you over the weekend. And thanks for linking to my blog. x

  4. Good for you for sharing, you never know who might not be aware of this so it's great for it to be out there so to say. It really sounds nasty, I never knew pretty much everything you've written here so it's good to know what to look out for. I hope things get better for you x

  5. disqus_k8R8UmI9Bk14 May 2014 at 17:51

    Hey Ang, it means so, so much to me that you wrote this - thank you. Thank you also for linking to my DVT post - I don't know if you saw but I wrote another one last week (after the Lifeblood event) about coping with the after-effects and having read this now, I realised that I didn't even mention PTS explicitly. I am particularly grateful for your last paragraph as I don't think that people fully appreciate how much your life can change in one moment and the long-term impact of suffering a clot. It gets tiring feeling like you have to explain yourself each time you put your leg up or need to go home early etc. Thanks also for the tips - I keep scratching my leg!! If you ever need to chat to a clot buddy, I'm always here and happy to share my stent/Rivaroxaban experience with you if you decide to consider those too. With love xxxxxxxxxxxx Bee

    PS. <--- link to post I mentioned above xx

  6. I wasn't aware of this at all, so thank you for sharing and I'm glad you have it under control and know what to do so many people wouldn't! Sending you lots of love and hope you aren't in too much discomfort at the moment xx

  7. Thanks so much, Liz! My leg is back to normal now, after spending rather a lot of the week with it propped up against the headboard of my bed and not getting very much done! Hope you're feeling better. too xx

  8. I know that feeling! Gutted my laptop has died, I'm having to drag myself downstairs to the desktop. Hope you're feeling better today xx

  9. I'm back to normal now, or what passes for normal with me! I climbed up a tree for a better picture the other day, so I may be even better than normal :P

    Take it easy on yourself, Liz! Hope you can find a comfortable way to sit or lie and that you're not frying in the sun today! Been thinking about you xx

  10. LOL! Climbing trees is too much fun, Lily always tells me to get down ;) I'm just finishing off a smidge of work and then I'm going to lie on the sofa, hopefully the dog won't come and lie on me! xx

  11. duck in a dress1 June 2014 at 23:35

    I'd heard of DVT but not PTS - there really is just all sorts of things people are dealing with and no-one ever knows. Thank you for sharing your story, the more people who are aware of it, the better! xx

  12. It's one of those "invisible illnesses". My body seems to put extra effort into obscure illnesses to make me more special :)

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