1. Community
  2. Chest and lungs
  3. Pulmonary Embolism

Pulmonary embolism advice please!

Posted , 23 users are following.

beth97413
beth97413

Hi,

I'm 22 and am in hospital with a PE about to be discharged. Have been in here over a week now.

I'm wondering how long it took for others to recover from this? Like how long off work etc?

I'm really scared about all of this!

Thank you

1 like, 52 replies

52 Replies

Prev Next
  • nicola22779
    nicola22779 beth97413

    Posted

    Hi Beth. I was on the hallux valgus forum when you said you'd got a PE. It's really good that you're close to discharge (again)! Sorry, I can't offer you any expertise or experience but I wish you all the best after this drama. Hopefully, your foot will make a good recovery too!
    • beth97413
      beth97413 nicola22779

      Posted

      Hi Nicola,

      Thank you so much, I feel I've had enough medical issues now!

      The foot actually has been ok, the pain in my chest was so immense I forgot about my foot pain!

    • nicola22779
      nicola22779 beth97413

      Posted

      Poor you! I really sympathise. Yes, I agree you've been rather greedy and had more than your fair share of medical issues! Let that be an end to it! All the best.
  • gerard26274
    gerard26274 beth97413

    Posted

    Hi Beth it is a bit scarey to have a PE. I had mine before Christmas. I was only off work for 8 days because no one would commit to any advice. Knowing what I do now I would have had at least 2 or 3 weeks and then return part time if possible so you can build yourself up. I'm feeling tip top at the moment and in the gym most days. Recovery seems to be more of an individual thing. I had a distant relative who was off for 3 months with a PE. Just don't rush it. You get better, you will be back to how you were before. Try and be positive !
  • -.a-way_forward
    -.a-way_forward beth97413

    Posted

    Hi beth97413,

    I can not give advise on PE. however, can you  share with me the following details?

    Cause of clot

    Size and location of clot/s

    Pain, mobility and energy, thoughts etc...

    Support? Emotional, Financial. Physical, Spiritual...

    Medication, side effects.....

    What type of work do you do?

    Personal responsibilities, financial, work, career, children/elderly/disabilities....

    My default opinion based on my personal experience of the condition is:

    1. See if you are eligible for a sickness/disability benefit until you feel well about yourself, also, if eligible apply for housing benefit, council tax benefit etc...

    2. Be prepare to sell assets, home, business or use savings to support your recovery

    3. Take time out and let the medicine work, get well steadily until you feel fit for work,

    take care all the best

  • ian_00335
    ian_00335 beth97413

    Posted

    Hi

    Hiw did u get in after ? And what caused your Pe?

    Thanks Ian

    • beth97413
      beth97413 ian_00335

      Posted

      Hi,

      I was ok for a while but now have severe anxiety and heart problems due to the PE. They said it's hereditary for me as my dad and uncle have both had them multiple times so am on warfarin for life now.

    • ian_00335
      ian_00335 beth97413

      Posted

      Very sorry to hear that,

      Mine was just after operation on broken leg from being immobile. I was in hospital a few hours had scan, big dose of blood thinners then sent me home. I have to take blood thinners for 3-6months.

      Even though mine is a very minor scenario it is very scary with lack of information out there.

    • beth97413
      beth97413 ian_00335

      Posted

      Wow they didn't mess about I was in for a week! There is a lack of information totally but I found many Facebook groups that are helpful x

  • debby01
    debby01 beth97413

    Posted

    Hi Beth97413

    I was admitted to hospital in November with PE's in both lungs and was discharged after 2 weeks. At the time of admittence I could hardly walk and not eating and hardly drinking. Now though in some respects I feel so much better nad am pottering around the house and do go for short walks, I can't do even the slightest of inclines as everything hurts and feel breathless and then anxiety kicks in.  I am waiting to see a respitatory physiotherapist who I hope will be able to help with my breathing.

    I know it is a really scary experience but listen to your body and the health professionals.  Your body will tell you how much you can and can't do, but the most important thing is to give your body time to recover from this trauma.

    Take care

    • beth97413
      beth97413 debby01

      Posted

      Hi,

      Glad to hear you're getting there! You will definitely recover but listen to the doctors. I saw so many different consultants and now 2 years later I'm much better in terms of the PE. I have severe anxiety though and have been off work for 3 months. They think it may be PTSD from the experience I haf with the PEs x

    • Murv01
      Murv01 beth97413

      Posted

      Hi Beth I also started with extream anxiety and depression after my p.e which was last April , my gp also says I have ptsd , just wanted to know what help you are getting for you're ptsd ???

    • beth97413
      beth97413 Murv01

      Posted

      Hi sorry to hear that. My gp has been brilliant, I am on medication and am doing online CBT therapy. I am waiting for face to face CBT at the moment. I'd definitely recommend seeing your GP and see what they can offer you x

    • beth97413
      beth97413 Murv01

      Posted

      Oh and my GP has referred me to a psychiatrist which will help x
    • debby01
      debby01 beth97413

      Posted

      Hi Beth

      I am so glad that you are feeling much better in terms of the PE's.

      I too am suffering with major anxiety and not too sure where to turn. I am seeing someone for CBT tomorrow so will see how that goes.

      Take care x

    • beth97413
      beth97413 debby01

      Posted

      Hi Debby,

      How long ago were your PEs? Hope the person tomorrow helps x

    • debby01
      debby01 beth97413

      Posted

      Thanks Beth.

      I was diagnosed in November and they have no idea what

      caused them x

    • ann55375
      ann55375 Murv01

      Posted

      I have develped bad anxiety and depression after a p.e. A couple of years ago, they have tried several anti deps but all make me feel ill.  I think it is the anticoagulant mixing with them which is the problem.  Its difficult to find anyone suffering these two illnesses together but i noticed you had.  I will be on anticoagulation for life and that makes it more difficult to get the depressive illness under control.  I can walk just more slowly, but my mental state is awful. What helped you.
    • debby01
      debby01 ann55375

      Posted

      Hi Anne

      I too have developed really bad anxiety since being diagnosed in November with large bilateral pe's.

      I don't like going out of my comfort zone and get paniky when I do. Sometimes even when I am relaxing I get the feelings of an anxiety attack coming on, the rapid heartbeats, disorientated, constantly needing the toilet, breathing goes funny and generally feeling terrible. I try and take my mind of things and keep the mind occupied but it is so very difficult.

      Try and stay positive x

    • ann55375
      ann55375 debby01

      Posted

      It has been some time since i had the p.e.  Warfarin started and i have had bad anxiety since, plus added bonus now of depression.  They are trying different meds for that but a lot are contraindicated with thinners. 

      I am stuck in my comfort zone, dont know why, and i am anxious even getting to a shop.

      trying to take mind off it all is so hard.  Have you been given any medication for the anxiety? What do you take formthe p.e s?

    • debby01
      debby01 ann55375

      Posted

      Hi Ann

      I am on Apixaban for the pe's and have been since November, I don't take anything for my anxiety as I don't think the gp wants to give me anything as I am still having tests.

      I totally understand what you mean about comfort zone...I don't like going too far and get really paniky if I go out in the country and have no houses around me, it drives me mad and controls your life.

      I am hoping that this does get easier as times passes and a sense of normaility comes back x

    • beth97413
      beth97413 ann55375

      Posted

      Hi Ann,

      Sorry to hear this seems I am the same. My PEs were over 2 years ago now and my anxiety has been awful. I had panic attacks on and off then in Dec 16 I was diagnosed with generalised anxiety disorder. I've been put on Venlafaxine for it and Diazepam as and when needed. It's horrible but apparently this is very common in people who have haf blood clots. If you're on Facebook I I have joined some good mental health and blood clot support groups x

    • ann55375
      ann55375 beth97413

      Posted

      Hi Beth,

      i too have now GAD and its turned into depression. I on apixaban for three weeks, fel much worse, going back to warfarin, clinic appt tomorrow. I just have no energy for anything and dont know if its the p.e s or if my dr should check thyroid and B12 as they can be implicated.

      i am not on facebook but i feel self help wont help me.  It as ifmtheres something physical going on. Have you been ok on venlafaxine? Its meant to be really good, a dr friend of mine used it for years.

      i have had over 20 cbt sessions but it has only shown me what i cannot do. Going out of comfort zone is a big issue for me just now. 

      Any hints you have are welcome.

    • ann55375
      ann55375 beth97413

      Posted

      We spoke six months ago and i wonder if you are any better?  I still have anxiety and depression and still on warfarin.  The antidepressants i wa on were not working well so they are trying to titrate off.  Have you found anynhelp with yours?  I still need the diazepam too.
    • beth97413
      beth97413 ann55375

      Posted

      Hi Ann,

      Honestly I am so so much better. I am on Venlafaxine and haven't had Diazepam for about 5 months. I've had CBT twice. I've gone back to working now but only part time and I am working with people in mental health crisis which I absolutely love. Plus I am learning so much more about different mental health issues. Which tablets were you on? I'm sorry to hear you haven't had much luck x

    • beth97413
      beth97413 ann55375

      Posted

      Oh I did actually have an other clot in my lung in July despite still being on warfarin. X
    • ann55375
      ann55375 beth97413

      Posted

      They have tried me with several anti deps , couldnt tolerate any, except mirtazapine which didnt do much so coming off now, the withdrawals are hellish.  Having tummy troubles too due to gallbladder removal.  Totally messed up,due to medics and their potions. 
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.