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.

Sorry to hear this, it must be very frightening for you.
When you leave hospital you will still be taking anticoagulant for some time as prevention. The consultant will decide how long depending on your risk level.
My good friend had a double PE 9 years ago. It took her a good 6months-year to feel well again, but it hasn't happened since.

I have no experience, OP, but just wanted to say sorry to hear you are in hospital and wish you the best and speediest recovery x

I had a singular PE about 14 years ago. Was on warfarin for 6 months. Took me a few months to be back to myself again but never had another one since. Best of luck x

I had one just over a decade ago. Small clots in both lungs. I was on warfarin for around three months after. Originally they said six but everything was fine after three so they said no need to continue. I've had no issues since but am no longer on the combined pill and have been told I'll probably need bespoke HRT to make sure that isn't raising the risk.
It's really scary when it happens as it feels so serious and like your body has let you down. It helped when one healthcare professional explained it's the opposite though. Your lungs have done their job amazingly and stopped those clots getting to your heart or brain. So give your lungs a little, wheezy cheer!

I've had one OP. It was March 2022. It took a while to feel normal again and to be honest I was iller from a reaction to the thinners than from the PE.

My periods went crazy and they couldn't stop the bleeding since all usual treatments for heavy period bleeding involve clotting! I was in hospital twice and close to a transfusion.

The lungs were bad for a couple of months and it took a bit longer to get my blood count / iron back up but I've been fine ever since.

I had one (singular) four years ago. It was terrifying so I really feel for you. Like PPs, I was on anticoagulants for 3 months afterwards and I'm not allowed to take certain medications or give blood, but no other problems now.

Thank you all. I’m just so terrified.

Hi OP ..not me but my husband had a double PE last year.He was extremely ill and very lucky.He was placed on Warfrin and had to inject at home as well as take medication. He does not need to inject anymore but he takes a daily dose of 10mg.He has had single PE about 3 times since but has not needed to be hospitalized. He isnt 100% and we have had to make certain adjustments to his diet which was easy enough to do. He goes to hospital twice a week for his bloods doing at present and gets his reading results there and then then the warfrin clinic ring him a few hours later to tell him if he needs to adjust his warfrin up or down. It is a case now of getting to a point where they can balance the medication. I have to say the hospital and warfrin clinic have been exceptional in the care he has and is continuing to receive. Life is good and we dont worry about it now like we did before,obviously it is a concern but it lessens for us.If he gets breathless unusually or his legs sort of ache or harden then its straight to A and E for us and they are very good at sorting him out again. I wish you well in your recovery.

I also meant to say he was very active and healthy prior to this and it came from nowhere it seems with no advance warning and I feel your terror. I/We felt the same. My husband is in his late 50s never ever been ill before in his life so the shock was something else! They will keep a very good eye on you so trust them, I did because I had to and they looked after my husband so well. They still are looking after him so I hope this eased your mind somewhat. Sending you a big hug and know this no more lettuce,kale,cabbage and sprouts! My husband says to tell you that every cloud has a silver lining and this last sentence was his!!!! Wishing you well x

I had a massive bilateral (saddle) pulmonary in 2018 - "massive" being a medical term rather than me being dramatic. It also caused right ventricular strain caused by the back up of blood in my heart. Mine was caused by a recent major leg surgery, so it was what they call "provoked". It sounds like yours may have been provoked by a combination of the HRT and virus.

I was in resus, then ICU for some time and had an IVC filter put in to stop any more of the DVT breaking off and travelling up to my lungs. Like you, I was very close to death, and was asked some very scary stuff in resus, such as "do you wish to be resuscitated if your heart stops?". The plan of attack was to give me the clot busting drug, but my orthopaedic surgeon told the resus team that he would have to immediately amputate my leg if they did as I'd have died from blood loss from the recent surgery (only a few days prior), so they essentially hovered over me with the drug watching the monitors in readiness to give it to me if I deteriorated further, fortunately the heparin and my body managed to deal with it. Subsequent Drs went white as a sheet when they saw my initial scan; general consensus was that I shouldn't have survived it.

I was eventually sent home on Rivaroxaban which I was on for 6 months (I guess you may be on blood thinners for longer if there's any question over the cause, mine was pretty clear cut). I am now essentially fully recovered, albeit some scarring on my lungs which makes running a marathon impossible, but day-to-day life absolutely fine. I was very worried about something called CTEPH (Chronic thromboembolic pulmonary hypertension) as long term complication but that didn't happen, and actually I was at low risk for developing that looking at the risk factors. Unlike normal pulmonary hypertension, this is something that is treatable though.

The biggest issue I had with recovery was the mental side of things, I developed pretty debilitating depression and PTSD which I ended up seeing a psychotherapist for some time for. Something called EMDR (a form of therapy) worked really well for me, as did a lot of meditation.

I was told I have a greater chance compared to the rest of the population of having one again, but it's still a very small likelihood. Although not on blood thinners anymore I make sure I take aspirin and wear compression socks if I'm flying or going to be sedentary for any significant amount of time. I also eat quite a bit of fresh pineapple (was mainlining it when I got home from hospital!) as the enzyme it contains (Bromelain - the thing that makes your mouth feel funny when you eat it) has been shown to break down clots. Have not had another since (touch wood).

I absolutely empathise about the fear of what's going on inside of you, it is debilitating. I'm happy to talk further if it would help at all. Sending you lots of positivity and clot-busting thoughts.

A friend had one last year. He's a very fit and active not even 30 year old. There was a bit of recovery time where he took it easy but he's back to normal x

They just told me of right side heart is damaged. I’m not even fifty.

I’m terrified even more now. I just cried over the junior dr.

I hadn’t realised massive was a medical term. Mine was bilateral massive. My blood pressure is high now too.

I am so sorry OP its coming at you from all sides. I know its easy to say and difficult to believe but you are in the right place.They will sort you and you may need to make some adjustments to your life short term but you are here with us to have a life.Its not over my darling its just different. Let them sort you and they will to the best of their abilities and you will soon be home to rest and recover.there is so much they can do to help you but it will take a bit of figuring out whats best for you. This is not the end of you it is a different new beginning. You need to be well and you will be ok. I wish I was there to hold your hand,hospitals are lonely places. They will figure out whats right for you,breathe and give it time. You can do this, xx

thank you for the kind words. I’m literally in shock.

Have faith, trust the doctors and have faith in yourself.You have been through a terrible shock and it will take a while to process. Can you find a nurse on the ward to ask if she or he can explain what is likely to happen next and what it means for you going forward? This might help cut through the fear and jargon and put it in a simple form for you? It might just offer you some reassurance?Nurses do things better than doctors in my view! When I was in with my dh I couldnt get what they were saying properly and I was having trouble proccessing things that were being said. A fab nurse took me to one side and gave it me in plain english..I understood then and felt a bit better. Might just help short term for you? x

I had a PE this time last year which they put down to a covid related thing. It was very scary however I left hospital the following day and was on anti coagulants for 6 months and have felt so much better really from a week or so after my hospital visit. I had covid around a month before I was diagnosed and was really breathless. Had a pain in my shoulder one night and 111 wanted to send an ambulance for me. I took myself to A&e and after blood tests, xray and ct scan was diagnosed with a ‘massive’ clot. I was scared to move for a while and now I’m just scared of getting covid again!
the good news is they found it and you’ll be treated. I had to change my hrt too. Watch out for heavy periods on the anticoagulants! I hope you feel better soon

I had thought I was getting over the awful virus. Felt almost normal the last week. Had a few small things. Hot tingles in chest but not pain as such, the feeling of water on my chest, like I had taken a mouthful of water and it had gone down the wrong way.

Then suddenly I can’t breathe if I moved. Did have one of those finger Sats things and it was down into the 80’s if I even moved a hand.

At least you have had the right treatment in hosp now. Further medication will reduce the risk of one in the future. Get well soon.

Called 111 they sent an ambulance which I was horrified about as I felt I was wasting their time. I was assessed and they said to go in.i was like it’s ok I feel fine if I don’t move. They insisted and that saved my life. A day or so before i had a strong sense of impending doom for like 30 secs. I was I’m going to die right now but 30 secs later I’m ok. I told the ambulance crew that thinking they would laugh and see it as a funny thing but they said they have seen that before. I laughingly said and how are they and the crew senior looked me dead in the eyes and said all dead. Then I decided to go with them. Apparently it’s a real thing. He said three times someone has said that and all 3 times they died shortly afterwards.

The dr said had I not gone in I would have died. PE kills quickly apparently.

Probably the last thing it feels like right now but it sounds that like my dh you have been lucky. Wasnt your time to go! Bless you x

Dh had a pe 7 or 8 years ago. He is on blood thinners for the rest of his life but he has been perfectly fine and healthy since.

Be kind to yourself OP. I think its perfectly normal to be scared and shaken. I had a sudden illness a few years ago, went from perfectly healthy to deaths door and recovery was slow. The shock of it was one of the hardest things for me, its hard to get your head around how you can be fine and then find yourself suddenly in hospital being told you could have died. It really fucks with you mentally and there is of course a fear that it might happen again. For me that fear lessened with time, there are certain things like if I have a fever I start to spiral a bit(I had sepsis) but day to day that fear became less all consuming and now I don't really think about it anymore.

That's a long way to say your thoughts and fears are totally normal right now. Just try and put your trust in the drs and know that they are keeping a close eye on you.