Anyone else had a pulmonary embolism? Hand hold needed.

[Allofaflutter]

Currently in hospital after a double PE. I’m worried so much it will happen again. Drs aren’t telling me much and I’m terrified it will happen again. Anyone completely recovered and never had one again? They kept saying how rare double PE was and how serious it is. I was hours from death they said. I’m just scared I’m not going to recover again. They have stopped my hrt and I’m been ill with this awful virus thing since NYE and they are saying it could be one or the other of both as reasons or just random.

Dayum! When it rains it pours. I hope it all settles down soon.

Hello OP really horrible thing to have and takes a long time to get used to .
Please don't worry about going back to AE if you have chest pain or breathlessness , coughing up any blood . All these things are part of having a PE but if they are getting worse or not going away they need to be checked . Including 999 if you are seriously worried if your symptoms get worse it's important.
The blood thinners may give you some bleeding side effects and you need to get checked if you have any prolonged or worrying bleeding including prolonged nose bleeds .
Please check out THROMBOSIS UK - it's a brilliant website full of information.
You need to rest atm , the clot will take 6-8 weeks to dissolve . And if you're heart was affected go back to the GP if you experience long term breathlessness

I’m still in shock to be honest. This time last week I felt fine! A little off but not dying which I was unknown to me.

Cellulitis is a painful condition. My mum had that for ages and it just wouldn’t heal. Try not to get too anxious. Anxiety is not your friend in these situations.

My leg has swollen up on the side. Been having cramp like pain in the back of it. Sats okish. Still short of breath. Do I go to GP tomorrow or call 111 today?

02 95% ish hr 95

I'd say call 111.

What’s the odds they just send me to a/e? I’m fed up with seeing the hospital. I can’t work out if I’m under reacting like I was last week to it or now over reacting.

I'd call. Cellulitis can spread very fast and in my experience IV antibiotics are best.

I really empathise with you. I was blue lighted in after messaging on here with you on Thurs and taken to A&E about 12:30 - could barely breathe and they had to put me in a wheelchair as I couldn't walk to get bloods done etc. 3hrs later was taken for yet another chest X-ray - I had 2 last week and they found nothing and after the 1st one I was wrongly discharged. So I was adamant I do not want another, I want a scan of my legs and arms and head as all three have sharp pains and I felt I was loosing the ability to speak. So they went off and left me there for 8hrs with no one else around me, barely breathing in a wheelchair. No food because the tea people were on strike, so nothing since breakfast. 8.30pm Dr finds me and happens to be the same one who told me about PE last week and vaguely remembers me. She admits me and gives me anticoagulants and another round of bloods, promises me full scans in the morning. Was also on phone to the consultant talking about my 2 miscarriages but unfortunately speaking in another language most of the call so I am none the wiser as to why those might be relevant. Spent the night and a new doc in the morning tells me that my bloods and obs are fine so I need to go home. After all of that i'm discharged without a single new test. Had to pay £50 taxi fare to get back too. I don't think I'll be going to hospital if anything else happens, I really don't think they have the resources to do anything but start afresh each time. I had to tell the Dr in the morning about the PE as he didn't even have that on his notes and I guess I'll never know what the Dr the night before thought they would discover!
I'm just stuck at home unable to go up and downstairs more than once without nearly passing out. It's been the most scary, worst explained and shit 3 weeks of my life. I've somehow got to walk a mile to get my prescription in 2 days time! Ha!

@embolismquestions would this be of use?

https://www.boots.com/prescription-support/prescription-delivery-service

@embolismquestions a clotting disorder is one of the most common reasons for “unexplained” multiple miscarriages. So the dr might have felt it was relevant to mention it to the other doctor. Hopefully at some point you get referred to haematology and get tested.

Yes! Thank you for that link, was starting to panic.

That’s just how I am being treated too. Got to A&E and OBS are okish. X-ray on chest then poked the leg. Sent home.

I called my dr surgery and the dr. Was very reassuring. Told me to expect pains etc. explained why my heart is damaged etc. key point for me is suddenly much worse. Then go in.

I’m considering PALS. Maybe you should too embolismquestions?

My dr did say this is where you see how bad the nhs is now. Thankfully I changed my drs to a supportive one.

My GP said they will be monitoring me and checking in on me.

It’ll take a while getting used to living with it. I notice you mention panic attacks - I had them after my PE too. I found square breathing helped. I’d put on a guided you tube video and just lie on the sofa following it for 15 mins while i calmed down.

It’ll sound crazy now, but I promise you the first complete of weeks are hardest mentally because you feel like the risk is super high, but the medicine you’re on is protecting you, which is why the doctors seem relaxed.

I think I went in twice to A&E, feeling as if it was happening again, and it was “just” panic attacks. It’s a frightening experience.

Gosh I can't even get through to my GP - the phone line just says they currently aren't taking any calls and hangs up! My friend said they are open for 10 mins at 8:30am and often have 20ppl in front of you in the queue even if you call at 8:29!
I managed to email them last week about my prescription as they had no record on the app of any of it and the Apixaban magically appeared on the app for me a couple of days ago, so they know I've had a PE at least as was in email, but no chance actually getting advice!

What is PALS and how can they help? Also the doc at the hospital never mentioned my heart at all, just lung clot and lung function isn't there. I did think it would be straining the heart but no sign of that on obs. Ambulance crew said it might be original clot breaking up causing leg and arm and head pain, but Dr1 never explained pains and was going to run tests before Dr2 sent me home.

I sent a message to my drs online. With in 10 mins I had a text to say duty dr was calling. Then less than 20 mins later he rang. 20 mins long call too. Our drs are good.

Patients Advice Liason service? It’s where you complain about hospital too.

Im so sorry your GP is shit. Can you move GPs ?

Thank you Penny.

Can't really as I moved from the other one when they refused to provide me with folate tablets when I was pg because they were "waiting for a fax from maternity" despite me having taken a pg test with them the same day! Another dr had told me he needed to film me crying to get me counselling (trainee) a year before so I moved as had had enough. They've just merged the other 3 local practices into mine and I think they're struggling.

I've known for a while NHS was up shit creak but never expected to be left in A&E in a wheelchair unable to walk or breathe without food for a whole day when they knew I have PE.