Life after pulmonary emboli

[tinytot1994]

Hi guys.

I am a 26 year old female and I ended up with pulmonary emboli ( extensive amount of clots in both my lungs with a DVT in my left leg) post surgery in June, it nearly killed me . I am now on Eliquis Apixaban 5mg twice a day until December (6 month course of them). I’m still a bit shaken after it all happened and I am so so paranoid over every little thing now. Every little pain I get in my leg or tiny bit of shortness of breathe and I start panicking and throws my anxiety through the roof! Does it get easier? I still get slight shortness of breathe now and again and automatically think it’s more clots but I can’t keep running to my GP because I’ve two small kids to mind at home. Is there after affects to having clots in your lungs previously? I feel like I just have a feeling of impending doom the whole time and that makes me feel breathless when I start over thinking it. My GP said I have PTSD after the whole thing happening.

How has everyone felt after having something like this happening? I have this constant fear I’m going to get more clots even while on Apixaban, is this possible?

Sorry for the long message, I just feel like I can’t talk to anyone else about it that hasn’t been through it because they can’t understand the feeling and emotions after it

[Hidden]

I think all we PE survivors suffer a great deal of anxiety. It does lessen with time - I'm now over four years on, and seldom get either chest pains or anxiety attacks now. I won't say I never do - and I had quite bad chest pains after having Covid-19 last year, but all seems to be well now. I have often told myself "If I don't feel better in the morning" or "by lunchtime" or whatever, "then I'll go to A&E" but I always have felt better! If you are achey and miserable, paracetamol can help. You know what is really annoying is that one can't take St John's Wort on blood thinners, as it's such a good anti-depressant, but, alas....

[tinytot1994 in reply to Hidden]

Thank you so much for your reply, you have eased me a bit now. God I’m so sorry to hear it’s taken you 4 years to try and get over it. I always tell myself that too, and I usually end up calming down a bit or it eases some bit. It’s like I’m always on edge and jittery now? And I feel like such a hypochondriac the minute my chest starts feeling a bit tight, I go googling straight away and feel so silly then! I’m so bad for not taking paracetamol or anything like that, I’m a bit headstrong and just keep telling myself to get over it and work through it. I’ve never heard or St. John’s Wort but it’s a pity it can’t be taken while on blood thinners.

[Hidden in reply to tinytot1994]

Yes, St John's Wort is a herbal anti-depressant, and the first medication of choice for people with depression in Germany, I believe. But it is not for us! If you do get badly depressed, it's worth going to your GP, And breathe! Not always easy (I still get breathless tying my shoelaces, but that may be because I'm a bit overweight).... but it does help.

[SpeedyH]

Hi there. I’m so sorry you had to go through that so young. A couple of things I would suggest: People either have clots that are classified as ‘provoked’ or unprovoked’ ie there is an obvious cause or there isn’t. When clots are provoked you take meds for 6 months, and when there is no obvious cause you take them for life. There was an obvious cause of your clots but if you haven’t had blood tests or a scan, it might be an idea to discuss with your GP whether it might be worth testing for other causes too, like sticky blood disease. If these tests are clear it will reassure you more that the clots are unlikely to return, especially when you come off the meds.The other suggestion I have, which helped me enormously, is to ask to be referred to a respiratory physiotherapist. This is because when we have any condition that causes pain or breathlessness, we often start to breathe in a different way to normal to compensate for it and our brain learns this new way of breathing and doesn’t go back to normal once things are healing. If you have learnt to do small breaths from your chest for example rather than proper breathing from deep in your abdomen, then your oxygen and carbon dioxide levels will get out of sync and cause anxiety, panic, pains, sleeplessness and loads of other things. A specialist physiotherapist will check that you do not have hyperventilation syndrome and will teach you how to get your breathing back on track. If you can’t get an appointment, google hyperventilation syndrome, or breathing exercises for asthma as these will help. x

[tinytot1994 in reply to SpeedyH]

Thank you so much for your reply. You have a wealth of knowledge and have eased me a bit. It’s nice to be able to talk to people that have gone through the same thing. I will definitely ask my GP to run a few tests to rule out blood disorders . I suppose I just feel like I’ve been given a death sentence now and every little ache and pain my brain automatically picks up on which then throws me into panic and overdrive. Also starting smoking again definitely has not helped and is worsening my anxiety! I have breathlessness every now and again but I know that’s from panicking because I become jittery agitated and can’t sit down, and my sleep is so poor at night now I can’t shut off. Thank you so much for pointing me in the right direction to try and help myself, it’s great to have this forum

[SpeedyH in reply to tinytot1994]

It is a big trauma, be kind to yourself. Also, quite a lot of people get aching pains from the meds so once you have stopped taking them I’m sure you will feel much better pain-wise. Hope you feel much better soon as it’s a lot to cope with having little ones.

[mestala]

2012 when I had similar when living abroad,Surgeon told me over 10 clots in both lungs.I still have shortness of breath and get conflicting opinions whether it is still caused by what I went through.Confusing it certainly is because up to 2017 I had made such an improvement and got back to doing most of my diy work on the house abroad.Came back to uk in 2018 and things got gradually worse again.I'll not go on any more about it but surfice to say I still have shortness of breath up to date and cannot do anywhere like as much as I could.

I am much older than you and hope you can get things sorted out...and yes I do still think back to when I had my unprovoked attack ....

Good luck for the future

[highlander777]

Hello - I had a DVT and PE over 5 years ago and was admitted to hospital. I had loads of tests and I was told it was unprovoked thing. I was on Thinners initially for 18 months then was advised by the Blood specialist that I could come off the thinners. I was OK for 2.5years then got another clot in my leg , so back on the Thinners. I guess my feedback to you is . Yes, it does mess with your head but if you are in thinners then the likelihood of getting another clot is extremely low . I would google the triggers for a clot which usually starts in the Calf first and usually things are hot leg, calf is hard and painful. I tend to lie on the ground with my legs in the air and leg which helps make the calves floppy. Also, I do exercise a lot and do about 300 - 400km a month on my bike. My right leg is still swollen . hope this helps

[tinytot1994 in reply to highlander777]

I am so sorry this happened to you too. It’s only now I can see how common it actually is and can happen to even the healthiest of people. I think I’m definitely more conscious of moving my legs a lot more now when I’m sedentary, just even moving my feet up and down. It’s a scary thing to happen, I hope you make a full recovery eventually

[Brookiebiceps]

It does get better,I just hit my 1 yr and thought my anxiety would consume me before then! I prayed a lot, talked to loved ones, deep breathing, a warm bath and meditation helped! Prayer was my saving grace though. I'm 41, I was a power lifter so having PE's set me back. I just got moved to the low dose 10mg xarelto and I pray no clots or bleeds! The anxiety was worse than the clots at times. Stay positive and keep looking up, you're not alone in feeling like this but it does get easier! God bless!

[tinytot1994 in reply to Brookiebiceps]

Wow a power lifter! So sorry this has happened to you also. It’s a horrible thing. I definitely feel talking helps a lot with the anxiety but then I feel I get a bit obsessed with it too, like my mom noticed I never sit down and I’m always trying to move around, I suppose it’s a subconscious thing I do at this stage and it’s always playing at the back of my mind. Please god it doesn’t happen to you again!

[Tr1cky]

Hi, I had an unprovoked PE 6 years ago. I was put on Rivaroxaban for 6 months, I also had great anxiety when it first happened. But it does lessen with time and now I live quite a normal life and I don’t think about it too often and I know the symptom’s if it occurs again. A friend of my wife told her, that her mother had a PE when she was in her 50’s and now she is in her 80’s and that’s looks like a good example that it is not a life limiting condition it something you can live long life with. It is very scary but live with it, things will get better..

[tinytot1994 in reply to Tr1cky]

This is definitely a great thing to hear about your wife’s friends mom. I’m constantly looking up the statistics of getting another one so I just need to back off it and get on with life. I’m glad to hear you made a full recovery! It’s stories like this that ease my mind a bit, thank you

[MaxiTe]

Hi I had a PE a month ago and I’m now on rivaroxiban. I had awful anxiety at the time as I was alone at the time walking the dog in a forest. I just thank my lucky stars that I am alive and kicking. Taking a tablet every day even if it’s for life is a small price to pay. The cause of the clot is unknown but possibly linked to starting hrt tablets. I still worry about every ache and pain but I lost my husband to a fall and brain haemorrhage 14 years ago , which there was no coming back from so I feel so lucky to be able to crack on. I think we all suffer a bit of ptsd after such a life threatening trauma. I think that now I’m on the correct medication that I’ll probably opt to stay on the low dose in 6 months to prevent any clots (or my worst nightmare..a stroke). Think positive happy thoughts, be thankful to have your 2 little ones to cuddle and I’m sending you a big hug too xx