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.

My family member had one, she was so poorly they put her on the hdu as her oxygen levels went right down to the point they weren’t sure she’d recover. As she was sedated they asked her husband to make a decision regarding a drug which would break the clots in her lungs down but could potentially give her a stroke. I remember just as her relative how scary it was. Big handhold and unmumsnetty hug OP. My relative did fortunately recover, she was on warfarin for 6 months and 10 years later is running around like a spring chicken and generally doesn’t have much trouble. It did scare us though. You’re in the best place, drs will take very good care of you, rest up and hopefully you’ll be home soon x

My brother had bilateral PE but was only put on oral thinners for 6 months. Didn't even get another scan at the end of it. At the time his D-dimer was 1100. He needed omprezole to counter the meds.

I had multiple PE's (more than one at the same time, not different occurances) when I was 18, so very young. I was on warfarin for a months after. Cause wasn't properly investigated, but I was very ill and bed bound 4 days before the pain started.

I now have scarred lung tissue, which a breath will catch from time to time and cause a sharp stabbing pain. Other than that, I'm dully recovered.

Good luck OP. It's very scary, but you're in the right place having excellent treatment. Hope your recovery goes well.

I had a large saddle pe last October. The recovery was slower than I was expecting but I feel as though I'm getting there. As with a pp I'm hoping I don't develop pulmonary hypertension. I am back to most activities but do get breathless pretty quickly. The right side of my heart was also affected but I think that has now resolved itself. It was a bit of a shock at the time but I'm just trying to get back to normal life.

Wow OP. Im saying a quick prayer of thanks for your life, and for the right paramedic coming at the right time and saying the right thing. ❤️❤️

Thank you. I’m struggling already to get my head around it all.

the PA just came and saw me as I was crying. They are doing bloods for checking for cancers and high lipids. She explained it better. Still scared but they said if they swap the injections for the tablets and get off oxygen I can go home which has shocked me too.

they Are going to try turning oxygen off and checking sats. I’m very surprised how quickly I’m being let go though. I’m happy to go home but scared to be away from help too. Said I’m going to be on virtual ward whatever that is.

Don't do too much too quickly. When I came out of hospital I needed to take it very easy. Even climbing a flight of stairs would leave me puffing like a steam train

You must have done amazingly well. The injections my dh had were once a day in his tummy and then a low dose of warfrin too. It will be scary going home but you will rest so much better than on the busy wards. Good luck ,They will keep an eye on you for weeks yet so dont worry about that x

Sats now holding at 96 % without oxygen so that is one thing done. Such a change in such a small amount of time. Had been hardly doing that on oxygen yesterday. They seem to be going for discharge as I said about it to PA on ward.

Aww chick it is frightening my father in law had one last year we were sure he was going to die. He had felt off for a few weeks and had pains in his leg.
He was on blood thinners for a few months and came off them now, he's doing well, heart was enlarged temporarily but has shrank back down (had to work harder due to the PE).

They should be investigating whether an underlying issue has caused the PE but I think in most cases it is a freak thing and unlikely to happen again so long as you maintain a healthy lifestyle.
You are in the best place don't be afraid to ask for clarification and also raise any worries.

Those injections really hurt though! Like 5 bees stinging.

They are doing tablets to go home with.

I wasn’t very mobile from nye to the week before I got it. In bed or sleep on sofa as I was so ill.

I want to go home but I’m also scared about going home. 🤦‍♀️

My DH had PE on both lungs - I can fully appreciate how terrifying it feels - later on you may want to speak with someone as, like you've said above, a lot of people don't find out they had one and they are fatal and this can sink in later.

For us

• DH on tablet blood thinners for life
• there was some investigation to try and figure why they happened but no cause found hence on them for life
• he actually had further episodes (not exactly same) where GP suspected body was trying to create another clot but blood thinners did their job

• it definitely had an impact on his health, he's always been very fit so this has decreased slightly but he is still active (it did take months to build back up strength)
• he felt really weak after the hospital, he literally could only walk a few metres
• also discharged quickly, it felt a bit scary given the rush admission but blood thinners do their job
• listed as vulnerable for health issues so it's definitely impacted his lungs, we're cautious with chest infections etc

Happened to me In 2009. Both sides. Just had back surgery and was back on the ward a few hours when I began struggling to breathe and was taken to intensive care. I was very ill for a few days but recovered. Needed clot busting drugs then blood thinners for several months but made a good recovery and went on to live a normal life. Dr's were the same with me because they just don't know how each person responds to treatment but once you begin the drug regime you will start feeling better. It is not a nice experience, just one is bad enough but I had multiple both sides.

That’s good to hear you recovered well 😊

I had one 3 years ago. I have to take blood thinners for life now. I've noticed that's not the case for all on here. I wonder why that is?

I’m worried as I’m almost 50, not fit at all and fat. Diet starts today.

I noticed the difference in how long the tablets need to be taken for too.

Still have a picture of my xray. You can see the embolisms as white splashes either side. I was on warfarin for 6 months afterwards.

They haven’t shown me my X-ray. Had a contrast ct too.

They are very scary. I thought the pain in my lung was because I had slept funny.