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.

Ahh that makes sense. So is that under haematology then ?

Yes, it is a branch of the haematology service. They will follow up with you and arrange the review as you get near the end of the treatment.

Dd hasn’t been told that and she’s been on them a year, don’t think she knows.

I think I’m having panic attacks too.

Or I suppose it could be symptoms still.

With regard to the haematology review this includes a risk assessment. DVTs and PEs are classified as provoked or unprovoked depending on whether a cause can be identified and what it was. The decision regarding short or long term treatment is based on all the information gathered from this assessment. It is complex and detailed and this is why some people stop the anticoagulants and others continue. Sometimes further testing is done to look for clotting disorders. These tests cannot be done while you are on the anticoagulants, so they have to wait till the initial course of treatment is finished.

Only with Rivaroxaban. It will definitely be in the patient info leaflet in the box. Apixaban is different. Warfarin different again.

Thanks for this thread OP - had more information on here than I've had since it was diagnosed!

I had a CT and only told I had a big clot on lung - I am worried they didn't scan legs or head and I might have more. No heart scan. Just given Apixaban and sent home alone. No advice on how to look after myself other than just take the pills. I have a call for mid Feb from Thrombosis team but what are they going to check via the phone? I was expecting an actual blood test at least!

The GP is actually right next to the walk in and I'm tempted to go back there as they diagnosed the clot a week before I managed to get the CT scan. My heart is racing atm but it feels like a panic attack and my right foot is tingling.

She’s on rivoxiban

Just rereading this thread is a difficult exercise for me - I don't think I'd realised either the cumulative effects of all that stress and the sense that I've had three very narrow escapes: I might have broken my neck, not my spine, or lost my mobility entirely, or died from those clots. I had previously diagnosed cPTSD, successfully treated, but am now going to seek a further evaluation as I do think it likely I've been retraumatised.

OP, do seek counselling and help if you need it. As a result of your thread I'm going to, and I can't thank you enough for this.

Tell her to read the patient information leaflet. The window for effectiveness is 2 hours, hence the need to take at the same time to keep the blood level stable, and a small amount of food is required with the tablets to ensure they work properly.

I just wanted to say that this is a very common feeling after a hospital admission and you are not alone in feeling this way.
I could write pages about my discharge from hospital after a long admission when I had multiple injuries in a car crash 5 years ago but I won't bore you with the details. But I can certainly relate to those fears and feelings of abandonment. Being sick in hospital is bad enough but you do feel you have that safety net of having people around you and being under observation, then wham, you're back to "normal" - except you're not.
I had PTSD after the accident but in therapy I realised that whilst the impact of the actually accident was of course significant, I was at least as badly traumatised by the events that followed, including my hasty discharge from hospiral in the middle of the night. I had EMDR therapy which to be honest I thought sounded like a load of nonsense when it was suggested to me but it did work. It's very early days for you yet but it's something that might help you in the future.
Be kind to yourself. Don't put pressure on yourself to do too much too soon and dont let anyone else do it to you either. And don't be afraid to get professional help if you feel you need it.

Will do, it’s so hard with her being an adult and trusting her to sort stuff out. She was so mentally affected by it all she actually moved out a few weeks after her diagnosis and refused to tell us where she’d gone or really communicate with us. Which was tough, it wasn’t like we’d had an argument. She had a total breakdown and I’d say it very much changed her as a person.

Really sorry to read this OP. I had a big DVT in my groin 20 years ago and I well remember the feeling of being told "this is really serious, and could kill you, now go home with these injections". I think TBH if it was going to kill you it would have done it by now (I mean that in a helpful way) - the clots you have are stable, and the treatment will stop you developing more.

I found the Thrombosis Charity a really useful resource for information: https://thrombosisuk.org/ They have a page about the psychological effects of VTE and what they call "post-thrombotic panic syndrome"

I’m glad my thread is helping others too. I do feel traumatised.

Try and make sure your breathing is steady and try and distract yourself with something. I would say if it’s symptoms they will continue even if you do try and think of something else.

I’m also worried that I shouldn’t be on my antidepressants. Just looked up on bnf that we use at work and it’s a red serious interaction.

I feel like I’m falling apart.

I am so, so sorry. That is just awful for both of you.

Thank you, she is actually back home now.

I’m glad she’s home.

Which AD is it? (If you don't mind me asking. You don't have to say. You could ring your local pharmacist and ask them to check for you).

There is a fb group called pulmonary embolism support group which is good.

Venlafaxine

I’ll join thanks. I feel so alone.