Apixaban for Pulmonary Embolism - Anticoagulation S...

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Apixaban for Pulmonary Embolism

Pickie123 profile image
10 Replies

Hi, I am new to this group and feel relieved that there is a community to support each other. I am a healthy 25 year old female and recently admitted to hospital where it turned out I had a clot on both my lungs and I am now on Apixaban. It has been a lot to take in and a bit of a shock so just thought I’d see if there was any advice from anybody for the recovery side of it and getting back to normal. Things like is it safe to drink alcohol, how soon can I return to exercise etc.

Thanks in advance x

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Pickie123 profile image
Pickie123
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10 Replies

Oh, poor you. It's devastating, isn't it? Happened to me back in 2017, and these days I am, apparently, living with a "chronic clot", whatever that is. And I was considerably older then than you are now. It will take you some time to get back to normal, so don't rush things. Listen to your body and do what you can, not what you can't. That said, try to get up and move about every 2 hours during the day, if you can. Unless they've put you on antibiotics for any reason, you can eat and drink as normal (obviously binge drinking is not a plan, but a glass of wine or something stronger in the evening will do you no harm, and may relax you). They'll tell you not to fly for at least 3 months, so if you are planning a holiday soon, make it somewhere you can go by train (European trains are fabulous).

I was told it can take anything up to 3 months or even longer to feel better; I can't remember how long it took me, but I know I have had to pace myself fairly carefully. I had already retired when my clots happened, so I can't really say anything about getting back to work - it's your body, and only you can know when you're fit, but you may very well be tired and unwell for several more weeks, so do listen to your body! And, of course, it depends on what sort of job you do - if you sit behind a screen all day, you'll be able to get back to work sooner than if you are in a very physical job.

By the way, if you have questions that you don't feel the hospital has answered satisfactorily, google and download NHS patient information leaflets about pulmonary embolisms, there seem to be plenty around, and maybe even one from the hospital you were admitted to!

AlisonClark profile image
AlisonClark

I agree with everything mrsredboots has said. I'm on warfarin so diet is different. The most important thing I would say is listen to your body. Gradually build back up to whatever your normal is. My employer was very understanding, I had a couple of weeks off after spending 5days in hospital, then did half days for a couple more weeks. Don't rush things, listen to your body and move regularly.

When I had blood clots in the lungs back in 2017 I had asked was it ok to go on holidays and about exercise and was told gentle walking is fine but stop if you are tired or not feeling well and yes holidays are fine.

mrdarcy1 profile image
mrdarcy1

Hi Pickie123, all good advise given above. Its pretty scary and brings your mortality crashing down on top of you.

Not to worry though, your young and on Apixaban.

Mrsredboots has given you all the advise you really need, listening to your body is the best route, if your tired, stop and have a rest. Drink plenty of water and don't go overboard on the drink.

Exercise when your body feels ready to do a bit and stop when it tells you to.

I had my first clot at 42, I never thought that much about it, to be honest.

I never realised what they were and what they do to you.

I've had another 2 episodes in my legs, so now on apixaban for life and as long as your sensible you'll be fine.

So take it nice and slowly and make sure you keep taking your Apixaban,

lcfcpolo profile image
lcfcpolo in reply to mrdarcy1

Hi. Have you had a PSA blood check completed. If not, please ask your GP. My DVTs were the first sign of a very elevated PSA. Good luck my friend.

mrdarcy1 profile image
mrdarcy1 in reply to lcfcpolo

Hi Icfcpolo,

I had the physical exam when the DVT's started last one 2018 not had the blood test as im only 54

Last DVT was 2017 been on apixaban since. No problems since then.

Good luck to you to!

lcfcpolo profile image
lcfcpolo in reply to mrdarcy1

Thank you. Good luck to you but please do ask for a blood test next time you see your GP or consultant. I was 53 when diagnosed.

Professor Whitty of Covid fame actually carries a massive remit. There is a YouTube video of him discussing with Cambridge University students why they don't test early for men but look at me. Can you imagine females not being given cervical tests. This is the same thing for guys. Anyway, rant over. Be your own advocate.

mrdarcy1 profile image
mrdarcy1 in reply to lcfcpolo

Hi, sound advise actually. I'll ask my doctor for the blood test. Makes sense to get it done.

Stay safe!!!

TonyGtMissenden profile image
TonyGtMissenden

Hi Pickie123, I too ended up with a PE diagnosis 4 months ago out of the blue. It was a huge shock. I am a runner, cyclist, never smoked, not overweight etc. and yet I still ended up with extensive clots on both lungs.

What might be re-assuring to you is that my recovery has so far gone well and I am now back running (albeit no further than 10K at a time) and have just returned from a skiing holiday. I started running 3 months after my PE was diagnosed and about a month after my main "symptom" disappeared (occasional blood in sputum- sorry for the gory detail) though gently at first to build up my confidence. Of course I lost some fitness (my VO2max is down 3 points!) because of several months without exercise, but it is already recovering. I found that I have tolerated apixaban very well with no side effects and it appears to have a very good long term safety record. I just had my 4 month follow up appointment with a haemotologist and I will now move to a lower dose. I'd rather be not taking anything of course, but I can't wish away what happened.

I have not really changed my alcohol consumption. I consume alcohol probably 3 nights per week though dont binge.

The advice from others here is sound, but also no need to wrap yourself up in cotton wool. Be sensible. When your symptoms go away and you feel ready for it, go out for walks. If your walks go well, start easing yourself gently into more aerobic exercise etc. As others have said, listen to our body and as long as you feel well enough to take the next step, dont be afraid of doing so. Good luck with your recovery!

Suebo2 profile image
Suebo2Moderator

All good advice. One thing to add is that it is VERY important to take the tablets. If you forget you are not anticoagulated. If you find twice a day a challenge you can swap yo a once a day tablet- all similar safety profile- but most important not to miss any. Also download the My Therapy App- free and can be a useful reminder.

Look up Thrombosis UK website - useful

Information.

Good luck.

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