compression stocking

I have been diagnosed with PTS and am awaiting a thigh length stocking to be specially made,bit late for me now but will hopefully help with the pain and swelling of upper leg.finally the hospital have kicked in and I will be being referred to vascular and haematology,but this should have been done weeks ago,but they sent me away,

just in the process of starting a formal complaint.

Hi, glad you're getting sorted and glad you're making a complaint too. I am not sure why you weren't referred to the Haematologist straight away. See when there was only warfarin, people were back and forth to the anticoag clinic at least every week for the first few weeks, and things like that got checked, and the anticoag nurses asked about pain, checked you had stockings and looked at legs etc. I was an anticoag' nurse for 4 years and some of the messes we had to sort out were disgraceful. There are guidelines out there and sources of  advice available, just wish people would use them.  I know that you won't want to hear this, but you've probably been overdoing it . You must rest that leg! Has anyone suggested that you may have already had the DVT before surgery? You said you were quite ill with gallstones before the op. Just a thought as I think it's quite unusual to have  a DVT after laparoscopic surgery,especially such a large one. Hope you feel better soon and the amitryptilline helps with the pain.

I appreciate the advice to be honest as I really am not getting alot this end!

I am trying to rest as much as possible but it's frustrating cos I want to do stuff too , I have been poorly for such a long time I'd love to have my life back.

Since I got ill in November last year I was literally bed bound for 7 weeks, I did go back to work but literally worked and slept and that was the cycle of my life previous to the surgery, no one suggested I could have got the dvt previous to surgery but I had no pain or anything? I had surgery 15/4 !and was diagnosed with the dvt 2 / 5 but it is very large and extensive and I already have PTS 5 weeks.

Life has changed considerably since diagnosis still trying to get my head round things it helps being able to talk on here though thank you x

You sound like you're a bad patient, just like me! 4 days after major abdo surgery my OH came home and found me cleaning the bath! Thought he was going to tie me to the sofa when he went out to work the next day. Being half ill ( as opposed to really ill, when you just want to sleep) is so boring, and if you're in pain you need something to take you're mind off it. I would almost bet my last rollo on the fact that you had the start of that clot before your surgery. As I said, if it was keyhole surgery and you were up and about straight away, I don't really see why you should have ended with clot, but that's not to say it couldn't happen.there's no pain or anyting until the clot's bigger or until the PTS kicks in, unfortunately.  You were probably chronically dehydrated before the op if you'd been really ill, which reminds me, make sure you drink plenty of water preferably . Really important. You've not had anything like this before in your legs or have a strong family history of blood clots? Have they left you on Apixaban or changed to warfarin?

Hi

No family history and yes still on apixaban.

My employer funnily enough a gp has said I need to question at my next appointment if apixaban is right for me, maybe I'd be better on warfarin which is more well known

The last few days iv felt really rough the pain is really getting me down.

I'd give anything to have my life pre surgery back.

Get me feeling proper sorry for myself x

So sorry you're in a bind. Constant pain is bound to get you down, and you were ill for some time before the surgery too. Gallstone pain is not inconsequential. I left anticoagulation nursing before the new oral anticoagulants were licensed, so I can't really comment from experience, but I do know the risk of bleeding is less than with warfarin, although the incidence of bleeding with warfarin is relatively low when it's managed correctly ie by a specialist team, rather than GPs (I know you work for a GP surgery, but there are good reasons why the specialist services were set up) . I did read that maybe for some people with a DVT it wasn't as effective as warfarin. If it was me personally, in your situation, I think I would prefer good old warfarin where you get your blood tests and know that it's doing it's job. Of course, warfarin comes with it's little quirks but TBH , as long as it's well managed ( by a specialist service) and  you don't make drastic changes to things like alcohol , diet and meds without telling the clinic it's not as bad as people often make out. There's something to be said for being continuously monitored by a specialist service. I did read that for some people, apixaban might not be as effective. Sometimes with new drugs there's a tendency to throw the baby out with the bathwater. Is the amitryptilline helping at all? I wonder if another drug for neuropathic pain, Gabapentin,  might work if the amitryptilline doesn't? Hope you start to feel a little better soon. Maybe when you get the stocking that'll help.

I have been on Apixaban for 8 months for my clot and heart condition. I prefer it to Warfarin because of the freedoms it offers regarding diet and continual testing it needs. No major side affects so will continue to take it.

Yes I guess it suits some but maybe not others. Good thing about having blood tests on warfarin is that someone's keeping an eye on things. For people on lifetime anticoagulation therapy a lot can cahnge in a year. For example, with older people on warfarin, it will come to light if they're forgetting to take meds as their blood results will be unstable. If they;re forgetting warfarin then they're likely to be forgetting other meds, so the service can liase with the GP re dosette box. People on the new drugs are still anticoagulated and therefore still at an increased risk of bleeding. Worries me that people are put on the new drugs and then they just sail off into the sunset for a year or longer. The other big consideration is that there is no reversal agent so if someone does bleed, spontaneously or due to overdose , or they need emergency surgery for an unrelated condition, it's a lot more complicated as the anticoagulant effect can't be reversed by giving blood plasma or by kidney dialysis to remove the drug form the system.

  Vit K reverses the effects of warfarin reliably.  If people are managed well and stable then blood tests are only every 3 months and just a finger prick test. Just out of interest, what do you mean by dietary restrictions?

That has something has always worried me that the newer drugs have no antidote and bleeding cannot be stopped.  I dont mind the Warfarin tests, I am down to every 12 weeks now as my INR has been stable for 8 months.  I think its good to see the nurse, I need another check up at the hospital but they have not given me an appointment and my nurse is chasing them up for me. She will I am sure get a better result than I would have. 

Hiya

Think I'm going to the docs this week getting terrible pain in my foot , don't think the amitriptyline is working as well as it could for me certainly not helping with sleep some nights im not having more than 2-3 hours and can't bear the weight of the duvet on my leg and foot so take it off but then I'm cold can't win.

Hoping for a better week

Iv been really upset this week finding it's all hitting home what I can and can't do.

What's your advice on exercise? They have given me no guidance at all , not that I'm up to jogging round the block but maybe doing something would build strength in that leg?

Anyway hope you are well x

Hi, you don't sound good and can't say I blame you. Re the pain, are you just taking the amitryptilline? No other pain killers? I really don't think that on it's own is going to cut it. The vein and tissues will be very inflamed etc. I agree with going back to the docs or call your anticoag' nurse and let them have another look at your leg.

If you don't sleep then everything is going to be,or seem,worse. I'm hoping you're not going to work? Can you try and have a nap during the day? Regarding not being able to bear the weight of the sheets on your leg, you need a bed cradle. I'm not sure if this is something the GP can organise via the practice nurses but worth asking. Im trying to think if there's anything you might have at home that you could use but it needs to be something rigid with 3 sides, one to slide under the mattress, a piece that goes straight up, and then another that goes at right angles over the top of the bed, which the covers rest on. Search for bed cradle on Amazon in health and personal care. Your leg will be hurting a lot at night because the blood will be pooling in your feet and lower legs. If you can try and sleep with your feet slightly higher than the rest of the body (on a pillow, or you can again buy special leg pillows. If you can do any sort of exercise then that's good. We advised to do as much as pain allowed, but if the pain was bad and the leg very swollen and red, to rest it every 30 minutes minimum. 

Have you got the stocking yet?

I am also on mst 25 mg morning and evening and paracetamol during the day

I sleep with my leg on several pillows

I do work but part time so I do catch up on sleep with naps during the day.

Still waiting on the stocking ill give the pharmacy a call tomorrow

Thank you so much for all your advice I bet your fed up of me already x

Hi and thanks for your help

I am still waiting for mine to be made , I know myself now I need longer as im getting dreadful thigh pain and behind my knee thats where my clot ends really hurts

In fact my whole bloody leg and foot hurts all the time , I never get respite from it.

Iv had an awful week very upset just getting my head around things not handling it all to well at the moment

Hope you are as well as can be x