I noticed that someone found my blog yesterday by googling “my compression stocking”. If you are here again today – hello!
In case anyone else is looking for information about DVT and compression stockings I thought I’d tell my tale. If you aren’t interested in all this palaver then skip this post and come back another day!
I was diagnosed with Protein S Deficiency in 1995. I went for a repeat prescription for the Pill and met a student doctor who asked me about my family history of blood clotting. No-one else had ever asked this but he had swallowed a new research journal and was doing the job properly. On hearing that my Dad had had at least two DVTs he refused to write me a prescription and referred me for blood tests and then on to the haematologists. They confirmed that I did have PSD but didn’t have any of the other clotting problems that are out there.
I didn’t actually get a DVT until the summer of 2003 when Miss Amoo was only 8 months old. I had felt uncomfortable behind my knee on the Friday but put it down to walking back from somewhere fast in order to get to the school gate by 3pm. By the time I woke up on Saturday morning my leg was twice its normal size and I couldn’t bend it or bear weight on it so off we went to hospital.
After some humming and haa-ing a cluster of junior doctors and a smelly consultant conceded that I might have a DVT (PSD and familial history plus fat swollen discoloured leg?!?! No Sh*t Sherlock) Anyway thanks to the ultrasound being understaffed on a Saturday it took until the afternoon for them to confirm a clot and me to get any treatment. If it were to happen again I’d be much less compliant and patient!
I was home on crutches the same day and couldn’t put my leg down for weeks as it hurt horribly. I had it up on the arm of the sofa in the day, or resting on the nappy bucket under the kitchen table when eating. I got up and down the stairs on my bum, I showered with my leg on the side of the bath and washed up with my leg bent behind me resting on the nappy bucket (it was the right height for all sorts of jobs!) Driving was impossible so I sat in the passenger seat of the car with my leg on the dashboard while Mr G acted as my chauffeur and hoped we didn’t crash into anything and snap my leg off! At night I slept with pillows under the end of the mattress to keep the leg above my heart and help the fluid drain out of the poor swollen thing.
I went to the DVT clinic every other day and they scanned my leg to see where the clot was as well as dosing my warfarin and taking bloods. The proper scan was a revelation; a clot isn’t just a blob you know! Mine is a long, long thing that reaches all the way from my ankle to at least my groin if not further up and it is in the biggest fattest vein in my left leg, known as the popliteal below the knee and the femoral above the knee.
I have little legs so even once I had a prescription from the DVT clinic for compression it took 2 weeks to get to me as they don’ t have many in size one petite. What a relief! These were Mediven Plus in EU compression class 2. They calmed down the swelling in my lower leg and really eased the pain but above the knee was still massive and I still couldn’t wear any of my trousers because I couldn’t get my leg into them. The DVT nurses suggested that I try a Medi thigh length stocking to see if that helped and although it wasn’t very comfortable I did notice a reduction in swelling all over my leg after a couple of months. I wasn’t sat on my bum all day though: I was walking as much as I could bear, cycling a lot and just managing to keep up with a toddler and two other children.
If you have pain and swelling you need compression and movement. If your leg hurts it is because the blood that should be getting up your leg and back to your lungs is getting stuck in all the tissues in your leg because your vein isn’t working properly. The compression is graduated, so tighter at the ankle and less tight at the knee. It works by helping to squeeze the blood up from your ankles so it doesn’t get stuck and pool in your tissues. Walking or cycling activates the ‘foot pump’; a muscle in the sole of your foot which works to pump blood away and up your legs helped by the calf muscles contracting.
Just waggling your ankles doesn’t make this muscle do its job: you must bear weight on it. If you have swelling the only way you will be able to bear weight comfortably is if you have compression stockings on so wearing compression is a top priority.
Unfortunately the best compression is not available on prescription but it is worth trying out a few brands to see which one suits you and fits you most comfortably. I once had some Credelast stockings prescribed by the GP and they were horrid even though they were free. My current favourite stocking is the Juzo Soft in calf length. It only comes in beige or black so I wear beige in the summer and black in the winter. I get them direct from Juzo (click on the UK flag for their phone number for ordering) for just under £30 per pair and although I wear open toe because I hate socks as a rule so this is the least worst option, they do have closed toe too.
My absolute favourite stocking is made by Sigvaris but they are silly expensive at around £50 per pair. If you want a coloured stocking or patterned or almost transparent for every day or a special occasion to wear with a party dress then Sigvaris is where to look.
So after that product placement, back to the tale. It is now 7 years since my clots formed and most of it is still there in my vein. Blood flows past it but my valves don’t work and blood still doesn’t move up my leg very well at all. Despite wearing compression every day and exercising plenty I have post-thrombotic syndrome. I am pain-free when wearing compression but every now and then I still get pain and when that has happened I end up going to A&E to get a second opinion. Mostly these episodes have been bouts of phlebitis which is inflammation of the vein and feels as if your skin is on fire from somewhere deep within the leg or just more unexplained swelling but I haven’t had another clot. And since I’ve been taking warfarin (coumadin) I worry less about getting another clot and take the odd pain here and there without panicking like I used to.
If you are at the start of your DVT and compression journey, don’t lose heart. Get the stocking on and get moving. In the beginning I couldn’t imagine getting upstairs easily or driving the car but now I am happy to say that I can walk for miles, ride a bike, run (if I really have to) ice skate (yay!) and dance at ceilidhs.
So don’t despair and don’t suffer in silence. If you have pain ask your DVT nurses to help you find a solution and if you ever feel tightness in your chest or get an uncomfortable feeling you can’t explain, don’t worry about it turning out to be nothing, get it checked out.
I know that a lot of readers have found this post through Google searches about compression and DVT so if you have anything you would like to add that you think might help others, or if you want to share your own experiences please do write in the comment box below. If you blog about this kind of stuff too then put your blog addy in the comment box too. It is easy to feel lonely with this and the more people talking about it the better.
If you have been diagnosed with Protein S Deficiency and want to know more about it please take a look at www.protein.org.uk where you will find a wealth of information about this condition and a forum full of other people who know what your concerns are and can help you on this new journey.
I have written a new post about PSD and compression stockings and diet when taking warfarin/coumadin and you can go here to read it.