Hi. I have just been diagnosed with multiple blood clots on both lungs and started on Apixaban. I still am breathless and have a tight chest and don’t feel that well.
I still feel a bit shell shocked and waiting for Consultant follow up. Also for tests to find out why I have clots. I really don’t know what I should or shouldn’t be doing.
Any advice I’d be grateful for and to hear from other people.
Thanks in advance. Poosie
Good morning Poosie, and welcome to this forum. It is very friendly and supportive. Can I ask you a few questions? Did your clots have a cause or did they just happen? And when? What made you realise there was something wrong?
The vast majority of PEs resolve. So the statistics are on your side. I am curious because I had PEs 12 years ago and they did not resolve. But that is rare.
I am pleased you are seeing a consultant. I should like to know more about your situation if you felt happy to talk about it.
All the best
Kate x
HI and welcome Poosie, I hope you get the answers you seek when you see the specialist. Katinka has a lot of experience if you care to reply to her. Best wishes.
Hi Poosie and welcome to the site. I dont have any answers to your questions but am sure others like Katinka on here will. You could give the helpline a ring and perhaps they can guide you. I hope you get the support you need x Helpline number is 0300 222 5800
Hi Poosie, I’m sorry to hear this, it can all feel very worrying & overwhelming. The new generation blood thinners are very effective at prevention but until the clots begin to disperse it’s probable you’ll still feel poorly. Fatigue especially, shortness of breath & pain beneath the Sternum all of which eases with time.
I had a saddle clot back in March which fortunately ended up between the Pulmonary arteries & not in the lungs. It was classified as ‘unprovoked’ which I’m guessing is the same as you ie no obvious cause. I do have regular bouts of Pneumonia which is a risk factor.
You’ll likely have anticoagulant appointments shortly but as it takes many months until things settle a Consultant might wait to see how well you can get in a few months. Anticoag review after 5 - 6 months to determine whether or not to continue with blood thinning.
The best way forward is being kind & patient with yourself, sleep when necessary, eat well, gentle exercise as & when. The hardest part is trying not to worry but as you improve I think that will become less of an issue.
My best wishes & thoughts to you 💐
Thank you x
My dad has had 2 PE and no known cause. Many have no cause, unless spent a long time not moving. Because dad had 2 PE he is now on blood thinners for life. After just one episode they usually stop medications after a while. New meds are very effective and hope you feel much better soon.
Welcome and best wishes. I hope you start to feel an improvement soon. xxx
I can only share my experience, but slowly, I did recover from my PE. I had a suspect one after covid pneumonia, and went back into hospital 2 days after discharge.
Yes, it made me a lot more breathless on top of the pneumonia I was recovering from. I'm told it can take a long time to recover from them, but we are all different.
I've made loads of posts on my recovery, have a read and you'll get an idea of my progress.
I'm not fully recovered, but I can walk a few miles now and function round the house, plus ride my ebike. My endurance is still a bit limited, but slowly improving.
Thanks for that. Do I just scroll through your previous posts to follow your recovery?
Yep, you should see them on my profile. I do roughly monthly updates, I'm 13 months into recovery now, however I was seriously ill at the time. The hospital unfortunately missed the PE and discharged me, I was fine for a few days recovering from the pneumonia, then I suddenly got very breathless and had to call an ambulance.
They did a scan and found what they thought was a PE. Recovery after this was a lot harder.
hi Poosie, I have just been diagnosed with multiple blood clots on both lungs so as you can imagine I was very interested in your post and replies…. I’m thinking mine may be due to the medication I’m on - carbamazepine I wondered if your on any long term medication?
I’ve also heard people are getting them from the covid jabs but need to do more research to see how much truth is in that but seeing as it was a doctor who mentioned it I’m thinking there must be… have you had the vaccinations? Have you had covid? I’ve had 3 of the vaccinations and I’ve had covid four times last time I was very poor and lost my hearing which has never been the same…
I’m 49 and have fibromyalgia so I’m not the most active but regular walking … do you have any underlying health conditions?
I’m not panicking about recovery I know that the clots have blocked the bronchi tubes so it’s not in the smallest parts I’m weak and quite lightheaded but that’s only since going on blood thinners I was diagnosed in November and have been on apixaban edoxaban but now I’m on warfarin as it’s easier to make sure I’m getting enough… carbamazepine interferes with the amount of apixaban etc so that’s why I swapped…. I’m quite a positive person but this has shaken me up I panicked wrote letters to my children and planned my funeral ….. I’m calming down now but it would be nice to know why? I’m sure you feel the same … anyhow please feel free to reach out to me… I had a dvt and a singular blood clot 18years ago when I was 30 and now I have to stay on blood thinners for life which is depressing … but I know it’s going to be ok… it has to be … but atm every little twinge I’m aware of would be good to know if your going through similar things… warmest regards to you emma x
Hi Daisiemaiskye. Sorry to hear about you developing clots. It’s a very scary time. I’ve had all my covid jags plus booster. Had covid in July and recovered quickly. I had breast cancer 14 years ago and been fine every since. I’m 65 retired but active. I jog most days and swim. Wasn’t on any medication but now on Apixaban. This came out the blue. No reason found for cause of them. Still waiting for hospital referral to speak to someone about them. Our local hospital waiting list to be seen by Respiratory is long so tho it’s been 2 months I’m not expecting an appointment any time soon. I still get breathless on exertion and no way could I jog/swim. As I’ve not seen anyone medical I don’t know what to expect. Hope you are okay and look forward to a lovely Christmas with your children. X
hi Poosie,
So the only common denominator there is the covid jabs….apparently they’ve had a huge influx of people with clots recently so it may well be a side effect people are getting…. Are you feeling any pain in your chest? I keep getting pains but they are in different locations each time…
take care emma
Hi. At times I get a very tight feeling in my chest and breathlessness. Also a sudden stabbing pain in my chest which is frightening. Hopefully things will settle down. 🤞
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