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DVT and PE expected recovery period?

Posted , 4 users are following.

Pixwix
Pixwix

Hi there

I'm hoping someone could shed some light on the expected recovery period for a DVT / PE. I do realise that each person is different so here is a quick summary of my experience so far:

*9 Dec - tore calf muscle

*1 week later hospitalised for DVT. Whole leg was swollen to twice the size from my toes to the groin

*Released from hospital 4 days later

*Back in hospital 3 days later with small PE on right lung despite INR of 5.2

*Fitted with Vena Carla Filter

*Released from hospital 1 week later

*Still on crutches and in compression socks

I realize that there is a long road ahead as I was only released from hospital this past Sat, however I was just wondering if anyone has had a similar experience to me starting with the torn calf muscle, and how long it took before you could walk without crutches and pain?

Thanks for reading and any and all suggestions are welcome smile

1 like, 14 replies

14 Replies

  • supercargo
    supercargo Pixwix

    Posted

    Hi Pixwix

    ​I'm probably luckier than you.

    Diagnosed with DVT in August, now on Warfarin for six months to maintain INR 2.5.

    ​Also wearing compression stockings.

    • Pixwix
      Pixwix supercargo

      Posted

      Hi Supercharge

      Thank you for your reply. How long did it take for the pain from the leg with the DVT to feel 'normal' again?

    • supercargo
      supercargo Pixwix

      Posted

      Hi Pixwix

      ​Pain not too bad for me, several days go without knowing I have DVT, then for unknown reason I get knee pain. Important to keep mobile, someone commented on this site that 'Walking Therapy' is important, i.e keep moving.

    • supercargo
      supercargo Pixwix

      Posted

      Hi Pixwix

      ​I was concered that after 4 months the swelling in my leg hadn't gone away. My INR nurse told me most patients say the same. Given time the swelling should go down.

  • john69167
    john69167 Pixwix

    Posted

    Hi Pixwix welcome to this site. Sorry that all this has happened to you.It was quite devastating for me at first and to be honest it still is some days. It really is true that everyone is different but as supercargo said it really helps to get mobile and start walking as soon as you can. It sounds like you are on Warfarin? and the pain should decrease very soon. The medication will stop the clot or clots getting larger and that will allow your own body to start breaking down the clot. It really is impossible to predict how quick your recovery will be but I would just reiterate that wearing the stockings will help reduce the swelling and taking the meds according to doctor's instructions is also important. It is a difficult stage at first as I found it all happens so quickly and there are a lot of major changes that can be hard to accept. There are plenty of forums and information on the internet but I personally got a bit obsessed with the whole subject and that did not hel[p my mental state. You sound as if you are holding up quite well. Do use this and other sites to gain support etc. I wish you a speedy recovery. You could ask your doctors about clot-busting treatment but I think you have to catch the clot in it's early stages. Do not be afraid to ask your doctors as many questions as you can. Wishing you loads of luck. John
    • john69167
      john69167 supercargo

      Posted

      Hi Bill I remember you were supportive in your posts to me when I first came on here.(as was Sheila). It can be isolating and scary having this illness and I think it important that we help one another as much as we can. I am still struggling some days and like you the swelling is still there though reduced. One of the things I find hard is the weird numb feeling I have in my foot. I also had severe hair loss with rivaroxaban (and scalp psiriaosis). I have just changed to Clexane injections but I don't know if that will be any better. I just hope the clot is going down! Best Wishes John 
    • Pixwix
      Pixwix john69167

      Posted

      Thank you John. I hope the Clexane works out better for you smile
    • Pixwix
      Pixwix john69167

      Posted

      Thanks John. I am currently on closely monitored dosages of Warfarin. And the Vena Carva Filter should catch any new clots.

      You are absolutely right about it all happening so quickly. It feels quite surreal for me at the moment, but every now and again I get this rush of reality where I realise that I still have a long road ahead of me. I'm sure once my torn calf muscle is fully healed it will make moving around that much easier though.

      I will definitely do whatever it takes to make sure that this doesn't ever happen again!

      I sincerely appreciate your feedback.smile

    • john69167
      john69167 Pixwix

      Posted

      Hi Pixwix good to hear from you. I think your positive attitude to recovery and determination to prevent any  recurrence will definitely stand you in good stead. I know what you mean about surreal. Nightmare is how I found it at first and still do sometimes! Once you are able to move about better and as your mobility increases you will feel better mentally and physically. It sounds as if you are safe with the vena carva and monitored warfarin. That long road gets shorter with every passing day! Best wishes. John 
    • sheila91262
      sheila91262 john69167

      Posted

      Hi John, Hope you are doing OK, glad the swelling is going down. My son has less swelling now after 2 years and exercises regularly. He has had an op at  Guy's & St Thomas' Hospital in Dec to stent his left leg in 3 places, you may have read my posts. His PTS is much better & we hope will be much improved when he runs etc. Grateful that he has been able to have this now. 

      Hair problems esp loss are common with anti coags, vit B esp Biotin is meant to help, esp in large doses daily, will do no harm as water soluble & doesn't affect INR.

      Good luck to all post DVT people. Have you spoken to someone about poss nerve damage?

      Waited 14 months for Ombudsman to come back with result of  no fault by Hosp for life changing post surgical DVT, waste of time, not sure what to do next. Need to be glad that things are improving & put it behind us.

      Sheila

    • john69167
      john69167 sheila91262

      Posted

      Hi Sheila good to hear from you ! I am glad your son is doing well. I have bought some Biotin and some Vitamin B's and am hopeing they will help.. The operation at Guy's sounds good and I am pleased your (and your son's) patience and determination have paid off. I haven't actually spoken to anyone about nerve damage but I think I will do so. Thank you for drawing my attention to it. Sorry to hear about the dead end with the Ombudsman. You and your son have been through a very hard time. Some  parts of the NHS are so backward and unhelpful these days. I do feel that DVT's and associated problems are poorly catered for and even swept under the carpet. It is quite depressing. Do keep in touch Sheila. You are a beacon of light! John
    • sheila91262
      sheila91262 john69167

      Posted

      Hi John, You are so kind.

      I agree about the NHS being in the dark ages about DVT and even though since 2010 there has been a push to reduce the number of DVTs they still are leaving it up to the hosps to decide about info and anti coagulation.

      One of the reasons Mr Black has the funding for PTS treatment is that there are thousands of people in the UK with post DVT problems and little or no or wrong info about what to expect and what to do next.

      In our case 14 days anticoagulation in hosp and day 15 sent home with nothing and no mention. The NICE guidelines are not universally used or taken seriosly enough. But according to the Omb the hosp did OK, maybe their expectations are set too low. The cost to the NHS is huge.

      The hosp has changed their procedures though, for the better, so at least others might be better assessed for DVT risk & better informed at discharge.

      Sheila

       

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