Return to work after PE and pneumonia

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Hi all, I'm hoping for some advice as I have had limited "aftercare" support. I went into hospital walk in centre on 22nd Dec with what I thought was a bad chest infection only to be diagnosed with clots on both lungs and pneumonia. I was in over night and have been home since, have now finished two different types of antibiotics and remain on blood thinners. I await appointments for heart, breast and abdominal scans and have anticog appt next week to review the doseage of the blood thinners. I have no idea what to do about work and need to set some expectation. I feel better but far from myself and remain breathless. I am also scared to resume normal activity ie trains and commuting because there is currently no reason at all why this happened, I am 32 and have no risk indicators. I feel really lost and don't know when I am expected to go back to work or what the risks are. I work for the police in a very stressful but not physical job (besides the travel). Any advice appreciated. Thank you.

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8 Replies

  • Posted

    laura04091 I'm no expert just someone who has had PE.

    A couple of comments keeping in mind every case is different.

    'Over night' doesn't seem long for multiple clots. I had multiple PE's and was in for 4 nights and back in hospital 4 days later with complications. My specialist, heart lung, at the hospital told me that 50% of cases are sent home from ER with thinners. 30% don't make the first night. The other 20% are admitted. So I guess there are variables that I'm unaware of. I'm sure they wouldn't send you home if there was any risk. (Mind you I had seen 3 doctors before I was sent to ER. The first 2 dismissed any DVT/PE issues!!!!!)

    See your GP. Then find a specialist you can trust. I would suggest that while you are on thinners you will be OK.

    Everyone is different. Be patient. Many folks are fine in a few weeks. Others take a year or two. While other never return to what the once were.

    good luck

  • Posted

    I agree that a one day stay sounds short. I had a similar thing happen (aside from being 30 years older) and was in for a week. I found that very little seems to be discussed with the patient after PEs and the medical specialty that it falls under is pulmonology and they should be able to answer your questions. Make a list of questions and get an appointment with your GP. Ask him/her the questions and, if they are experienced, they should be able to answer some. If not, they should be able to refer you to the pulmonologist. Failing appointment with GP yielding any results, quiz your haematologist, as he/she knows a fair bit about clots and is responsible for some of the tests.

    It would be good to know what caused it, but often they characterise it as "idiopathic" meaning cause unknown or spontaneous. One thing worth noting is that PEs can be caused by the birth control pill. If so, I believe they should have taken you off it.

    I would not be looking to go back to work yet, especially since they know so little (i.e. you are still waiting most of the investigations).

    Good luck and ask any questions on here and you should get some pointers.


  • Posted

    Thank you both, I do have an appt booked with my GP however there was little urgency there too and that is next Tuesday. I'll definitely take a list of questions with me.

    With regards to only being in over night, worse still is that was 10 hours in an A&E waiting room followed by seven in ambulatory care, I was never actually admitted and felt like a huge inconvenience to anyone I did see. I had CT scan and another V something (nuclear scan?) which is the one that confirmed the clots on both sides. I did have an appointment to go back the next day but that was just the first anticog appt, the nurse there took me back to ambulatory as I was so poorly but they sent me home again. This has all just made me feel like a nuisance so your replies have made me feel a bit better about what probably should have happened vs what did.

    I think I'll set the expectation with work that until I have seen GP and have the appointments through for the scans that I'm safer waiting it out at home. I haven't had so much as a bug this year so I am struggling with being off and missing what's happening but I know needs must.

    Thanks again for replying.

    Ps no birth control meds so still none the wiser

    • Posted

      Make sure you get your flu jab, to prevent any more problems if you haven't already had it. The NHS is useless when it comes to PEs. Most of the doctors I saw knew very little about them. I had to go private to get a diagnosis in the first place because everyone said that I was just experiencing indigestion, anxiety or inflammation. I had quite a few side effects on the blood thinning tablets so I eventually got tinzaparin injections after about a month and a half of the tablets. I think it was apixiban that made me more breathless and gave me crushing chest pains worse than before I was on medication! I also had lots of other side effects like headaches, nausea, numbness and tingling and extreme tiredness on them. The injections gave me bruises and painful lumps, but I was able to start doing normal things again quicker. I felt like an invalid on the tablets. I was supposed to have anticoagulation clinic every 3 months I think but I only had one and I had to go private to get my prescription changed.

      You need to be quite pushy with the NHS to get what you need sometimes and have a list of questions written down what exactly you want to know when you see a doctor or nurse so you don't forget. If you think they don't know the answer when they are replying (which happened to me when I asked certain question, some people definitely give an unsure yes or no!) Look stuff up or ask on these message boards. I still have unanswered questions but most of what I found out came from people on this message board and reading literature on the internet.

  • Posted

    I also had no risk factors, healthy 38 year old. I came down with pneumonia, followed by a PE. Interesting. I was out of work for a couple of months, and it took a couple of years before I felt close to normal again (although some people feel just fine after a few months). Take it slow, you'll be fine, it just takes time.

  • Posted

    As far as your PE, you will be back to work within a few days once its under control. Once under control, you will never even know you had one. (Mine was between my lungs, resting on my heart. My heart was then spitting out clots too) Your biggest recovery will be the pneumonia. I had both. However, not at the same time. My pneumonia lasted 3+ weeks.

    However, everyones recovery is different. Good luck! Feel Better!

  • Posted

    Hi Laura,

    I had a PE in June 2018, I was also in hospital for one night then, sent home with apixaban (eliquis) to take for three months.

    I thought I had a cold as a lot of people were coughing at that time, I developed a pain under the breast, it was very painful, I went to the GP and he said I am worried it is a clot in the lung and sent me for an x-ray. I had to call an ambulance that night because the pain was excruciating, I was still four and a half hours in A & E. A doctor at the hospital said the lung had partially collapsed, but would recover, I do get out of breath far more quickly than before the clot. I was given an echocardiogram three months later, they put the clot down to having a hip replacement the previous April.

    The apixaban made me ill therefore, I stopped taking it after a month, the experience has left me a bit paranoid, I worry about a return. I exercise a lot, drink more water, including root ginger tea (GP recommended that), eat anticoagulant foods and take supplements especially bromelain which is supposed to have anticoagulant properties.

    I have never had any follow up apart from the echocardiogram, no one has ever been in touch, I have been left to find my own way through, learn about anticoagulant supplements and foods. It is scary, it does make you paranoid. I wish you good luck and hope you get some help. Take care of yourself.

  • Posted

    Hi , I know this is a quite old post, however I am currently suffering with PE and its absolutely horrible, my story..... went to A&E after calling 111 as I was getting breathless and had been for at least 10 days !!!! After a 7 hour wait and blood tests,x-rays and a ecg I was sent home saying they found nothing and it was probably down to me carrying a bit of timber!!!! Then after a day of not being able to walk more than 10 yards before I struggled for breath I got to see my GP he sent me to another hospital, had all the same tests as I had two days before! but this time I had a CT scan and in the words of the consultant it looked like someone had chucked a tin of red paint at my lungs!! so after 5 more hours I finally had the answer!

    My question is when do you start to feel better? been on blood thinners for nearly a week now and everything is so difficult I have to g myself up just to go to the toilet, as for sleeping that would be nice.

    Any tips would be greatly appreciated 🙏

    ps I am a 58 year old male.

    thanks in advance Dave

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