Pulmonary embolism

[Musicalmistress]

Recently diagnosed with a spontaneous multi clot pulmonary embolism and right side heart strain. Spent 3 days in hospital for monitoring and likely to be on blood thinners for the rest of my life.
Has anyone had similar? How long before you were able to return to work? I’m an early years teacher so fairly physically demanding job.

Me, and the same, 3 days in hospital and blood thinners for ever. Which is fine, one tablet per day. I do bleed like a stuck pig if I cut myself or the cat scratches me though!

I was back at work within the week, but it was covid, so wfh and an office job anyway , I'd definitely have had more time off if I had a job like yours.

It's terrifying when you find out what is wrong, (i cried at the doctors and I'm not a crier) but it hasn't made any real difference to my life going forwards bar the tablet. You'll be fine. I'd ask the doc what they think re recovery time.

Take care xx

I had 2. I was on chemo (common side effect) but it took 3 emergency trips to A&E within 10 days and being kept in each time.

i have issues with my lungs, one is folded and I have pleural fluid build up under the other. Had my second heart scan this morning.

but… I’m not sure how much of that is connected to the clots or chemo. I’m no longer on thinners

Oh one thing to note, because of the thinners, I bruise a lot more easily (and I am a left handed clumsy person) so you'll want to take care around bumptious small people!

That's a lot. I hope you are doing ok.

Thanks for replying. I cried too despite half expecting it!
I’ve had wildly different answers about time off from different doctors - consultant told me realistically at least 6 weeks due to my job (2 weeks with no exertion then at least 3-4 weeks building back up before he’d even think about work) but the doctor on the medical assessment ward I was monitored on said a week!
Im currently on 2 tablets a day till I’m reviewed at clinic in a few months which is fine, it is what it is.

Oh my goodness that is a lot!
Hope thing go better for you.

i already bruise like a peach so can only imagine what this will do for my rainbow of bruises!!

I'd go with the consultant if you can get signed off. The other one may have not factored in what your job involves.

Ha, I frequently look like an impressionist painting.

I had multiple clots on both lungs years ago. I was in hospital for a week, then had two weeks off work. It took a month or so to feel okay and a bit longer to stop stressing it was going to happen again.

Yes, the mental side was the bit that took the longest to recover from.

I had multiple on each lung a couple of weeks before my 21st birthday. I take blood thinners for life and physically am fine, I run half marathons! I had a week in hospital and was back in work once I was out but was an office job. I still struggle with the mental side eg I currently have a scratchy throat and every time I cough a bit I get worried.

I had one over 2 years ago and it was 10 months before I returned to work; that was phased and to a part-time job when I'd always been full-time before.

I'm a lot better now but still limited as compared with how I was before. I was reassured it was normal to have a very slow recovery but I never realised it would be this slow. I'm still improving (incredibly slowly) but my lungs don't now fully expand and I've got an upcoming appointment with the respiratory team to try to better understand what damage has been done and what the prospects are.

Well, now I'm worried. Was diagnosed with PE in both lungs last year in A&E, sent home after 5 days and basically left to it except for changing the meds from 5mg to 2.5mg twice a day. No follow up or anything to do with the heart or lungs. What should I be looking out for?

If you feel fine then stop worrying. 😊

Re my lung I felt like I can't always get a full breath, get aching in the area where the clot was and it just doesn't feel right. That sent me to the doctor. Initially she just made reassuring noises but then I had a procedure under general anaesthetic and took a while to recover, so I went back. She then sent me for spirometry which showed the restrictive breathing pattern. Am seeing respiratory because the doctor asked whether this was to be expected and they said I was rather complicated (unrelated cardiac issues), so please refer.

My experience as a doctor is that people with PEs get told wildly optimistic recovery times by hospital doctors.

They don't see you once you go home so never get any feedback that 'actually i was still breathless after a month' or whatever applies to you.

The Consultant has seen how long it really takes to recover so I'd take the 6 weeks as a minimum and reassess if you are going to need longer at 5 weeks.

May I ask how people found out they had a PE? I have several, probably as the result of a long haul flight, but I wouldn’t have found out had I not had a chest infection that caused me enormous pain so I went to the doctor’s. They sent me to the hospital where they did a chest x ray and CT scan and found both the chest infection and blood clots. They couldn’t believe that I wasn’t breathless and didn’t have a bad cough. I’m on blood thinners for three months and have to have another chest x ray in 6 weeks for the chest infection.

I felt not right for weeks but with very vague symptoms of tension and physical stress. No breathlessness, no cough, no chest pain. A lot of ectopic heartbeats, though. And some aching just where my right abdomen/ribs meet.

Eventually I booked to see the GP as I just didn't feel ok. By the time I had my appointment I had coughed up blood, so she did a D-dimer, then when that came back at nearly 4,000 got me immediately onto blood thinners and off to the hospital for a CT scan!

I had been walking around with it for 10 weeks, though, with no specific symptoms until the haemoptysis. Doesn't bear thinking about.

I was told it's not uncommon for PEs not to present with the "classic" red flag symptoms.

My leg swelled up, and when it became too painful, I called the doc, who took one look and sent me to hospital. When they scanned me they found 4 in my leg but one had gone on an adventure to my lung.

I felt fine in myself bar the pain in my leg.

Thank you this was a really useful perspective.

Yes, the only follow up i have is yearly blood tests. But I think that's about any effect the meds may or may not have on kidneys etc. All fine so far.

I had an ongoing issue with back pain/possible kidney issue and my legs had swollen up. I then developed 3 sore, red, warm, swollen areas on one leg and having had a superficial clot last year went to the GP. I had mentioned slight breathlessness on exertion (climbing stairs/getting dressed etc) at an earlier appointment so she referred me straight to hospital. I had a blood test (alongside other tests incl ecg) and started on blood thinning injections until I could be scanned early the following week. Chest scan showed multi clot partially blocking the vessel and strain on my heart so was admitted straight away for monitoring.
I was on blood thinning injections initially but moved to tablets just before discharge from hospital and they’ve said I’ll likely be on them for the rest of my life as these clots seem completely spontaneous- no long flights, immobility etc. They were really surprised I wasn’t more breathless and didn’t have much pain (little bit of discomfort like I’d taken too big a swallow) given the size of the clot mass and the pressure on my heart but I genuinely didn’t.

I had one on each lung, blue lighted to hospital, family told I might die. 3 days later I went home and one week later returned to my full time hospitality job (12 hour shifts). At my 6 week review I'd completely cleared the clots, regained my lung capacity (I am asthmatic) and they withdrew the thinners. Mine were the result of being immobile for 5 days after a really severe bout of food poisoning. Symptoms were dizziness and being very short of breath, I was trying to suck air in so sounded horrendous apparently. By the time the ambulance arrived I had blue lips, they were unable to get a blood pressure reading and said 'that's not happening ' when I told them I'd be OK if I just had a little sleep.... Everybody recovers differently and I know mine was pretty speedy considering the size of the PEs.

I had been absolutely fine then just woke up one night with severe chest pain, I actually thought I was having a heart attack. Ambulance to hospital and they decided it was muscular, I was about to be discharged when a doctor came on shift and said he’d like to do a blood test and scan first. Thank god he arrived when he did.