I was diagnosed with multiple blood clots in my lungs just last week.
I am really scared and anxious about what will happen to me. I’ve had no info - just told to take Afixaban. A couple of questions I have like when to go back to work, what exercise should I be doing, if any, should I be eating and drinking certain things were not addressed.
All advice for the newbie will be gratefully received!
Poor you, it's terrifying, isn't it? Happened to me six years ago. I was lucky, though - I was put under the care of the haematology team at Guy's Hospital, and they were terrific, although they did, I think, underestimate the anxiety. Take the apixiban as directed - you don't have to avoid any specific food or drink, although you shouldn't take ibuprofen or any of those - paracetamol has to suffice!
As for exercise and going back to work - you know your own body. You will likely feel exhausted for several weeks, if not months, but you may bounce straight back, some people do. Others don't - it does depend on your age and your general health, and, indeed, why the clots formed in the first place. Do what you can, not what you can't. If you find walking round the block exhausting, don't do more than that at first. Many people have found a phased return to work helpful.
It might be worth contacting your GP and asking what next. They may well refer you to a local haematology team, or they may look after you in-house, as it were. Good luck!
thank you for your comments. Every bit of information helps. I’m just so confused as to why I would be discharged and left in this state. I’m struggling to get my breath tonight and the pain under my ribs is that stabbing one again. Should I worry? Or is the fact I’ve already got clots in my lungs mean I don’t have to worry? I’m sorry. I’m scared.
No, it will likely be the clots settling down. If your breathing gets very bad, go to A&E again, as they can certainly help with that, although that probably can't do much more for the clots, which will resolve themselves in due course.
Don’t be anxious , makes your oxygen drop. Insist on 6 monthly Guys clinic visits ( usually 3 to start ) blood tests before automatic . My ‘ friend’ said she had many blood clots in lungs , I said WHAT ?? are you under Heamo team , she said no not yet ! I asked her for a year after , OK? on meds? She was vague . Worked 9-5 x 5 in chemist , smoked fags. Didn’t seem worried . Vague but oddly reassuring
It's a shock to find out about a problem you can't see or touch and know there is plenty of information pointing you towards impending doom! Health professionals also don't have time to hold your hand. They treat you to the point they have provided the best support available in the circumstances.Another way of looking at your situation is they have provided the treatment to manage your condition. They have done what they can do. In your case it seems like anticoagulants is doing the job.
I had a stroke, mid cerebral infarct, thrombolysed, discharged , antiplatelet, get on with life!
First questions, what can't I do, what should I stop doing, what happens if it happens again. A month of disabling thoughts.
Then a realisation that I had to make my life going forward better. The Drs had given me the best possible second chance.
So look at lifestyle. Lower cholesterol, loose weight if necessary (slowly not in a mad diet), increase enjoyable exercise but not to extremes ie if you run , it's not a race, it's at a conversational pace, there should be no pain or exertion. Walk more.
If you have worried partners or relatives engage them, don't push them away. If you want to run say, or go for an off the beaten track walk, use a phone tracker eg Strava app so they can see where you are.
If work is important for you, self esteem etc, go back to work but engage with your employer if your condition is giving you fatigue etc.
I have to say, by gripping my diagnosis and taking responsibility for my health I am in a much better place now mentally and definitely physically than before my stroke. If I have another event I'm in better shape!
My stroke came out of the blue, no warning. I think about it , it doesn't go away, but I'm on anticoagulant now as Afib was found, so I am being medicated, probably for the rest of my life but I'm happy with that. And my lifestyle changes have been great
I hope this isn't too sickeningly upbeat, but the mental health side of things to achieve change is probably most important and can only really be managed by yourself. You know yourself best.
Please see my comments above - they really do apply to all of you who have jumped in so quickly to try and help me. I’m stunned.
Yup this thread is always ON , love it 😍. Never alone in the quiet of the night . Be proactive , be own researcher . Speak up for yourself . Be upbeat banish negative anxious thoughts . It’s a bit sickening 🤢 but we are what we create .
Hi, I fully understand how you must be feeling, I had an unprovoked PE 8 years ago completely out of the blue. I was given every test under the sun to try and find a reason why but none was found. I have been put on an anti-coagulant for life (rivaroxaban) I can eat and drink what I like with no ill effects. I think Afixaban is the same.
You will find for the first few months your anxiety levels will be very high worrying about a recurrence and what you can do or not to do, that was eight years ago and now I live a normal life and exercise regularly but avoiding contact sports as I am on a blood thinner.
Mrsredboots gives some good advice about returning to work etc. as we are all different.
please see the replies on both comments/replies above. Thank you. Thank you for being here. I don’t know what else to do.
It's very scary I had the same treatment's not knowing what's going on in your body made me feel like I was doomed every time I got a pain near my left lung and heart area.I get low level pain mainly on my left side,it's dosnt hurt,strange feeling,it comes and goes for days and then gone for a week.I got AFib from PE also.I had multiple clots too.I felt strange in my body,,light headed and tired.7 months later I do feel lots better,i go to the gym but don't rush it anymore.Try not to worry and don't be afraid to push your GP if your not well.I was a fit 51 when my PE struck from DVT,after seeing 5 doctors 5 weeks later my left leg blew up twice the size,my leg diagnosed my illness not my GP,massive thumbs down to them they nearly killed me not listening.The answers on here are more informative then my GP.They don't tend to give you a CT scan to see if your clots have dissolved.Take it easy don't rush things.Please feel free to contact me I know how you are probably feeling but generally things slowly improve.My life is a bit slower,almost back to normal 🙂🙂🙂
I had the same 4 years ago the anticoagulant medication will clear the clots over time all will be good gentle exercise walking etc.. then you should be able to push it. You need to listen to your body if you get out of breath, just ease down 4 years down the line completely, normal life, don't drink too much alcohol or eat pineapple. The rest is just common sense wish you well for a full recovery
Hi! I remember being in your situation. I started with multiple pulmonary embolisms and large dvt back in 2020. I spent a month in ICU. Since then, I have had several more PEs - on the 20th of this month it would mark three years of this.
I am here to tell you what you are feeling is totally understandable and normal. It is a scary thing. But, I am also here to tell you that you are stronger than you think. You got this. What anticoagulant are you on? Warfarin? How are your levels? My problem is that all anticoagulants failed me ( I had blood clots while on all of them), except Fragmin injections. I had to stop them though because my insurance suddenly refused to cover them - and I can’t afford $1200 every two weeks. So, I am back on Warfarin - which I’ve re-clotted twice on now.
If you need to talk, I am here. Keep fighting. 😊
you can google all your basic questions really . Just take your blood thinners on time every day. Probably won’t happen again . Don’t do high risk for head injury sports. Wear hood helmets if do . Avoid sharp knives . Alcohol and grapefruit juice thin the blood , so should be avoided . Certain things thicken the blood so should be avoided . Google google . Email your Haematologist team. These days they do rely on intelligent patients to google the general stuff .
Why continue warfarin?
Hair Loss on Warfarin 
Apixaban for Pulmonary Embolism 
MGUS and PE in January 
