Recovery after PE is more than possible - Anticoagulation S...

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Recovery after PE is more than possible

aleksandrskrivickis profile image

13.05.2016 (Friday the 13th) Diagnosed with Massive Bilateral Pulmonary Embolism approximately two weeks after getting big bruises on legs during a motorcycle accident (at that time I was not aware I had protein S deficiency that in combination with bruises triggered blood clots forming in my legs).

Couldn't walk without chest pain for more than 2 kilometres after getting out of the hospital, where I had spent slightly over two weeks, despite taking beta-blockers. Heart couldn't pump blood from veins efficiently enough and my ankles were swollen most of the time. Was also put on 20mg a day rivaroxabane - Xarelto. That also had it's side effects, in my case, it was a pain in arms and legs, didn't mind that at all knowing it saves my life.

Doctors advised me to stay in bed for at least the next half-a-year but I couldn't. At the beginning, my condition was so bad that I had to force myself to breathe most of the time to avoid chest pain. My life turned into good days and bad days. 1 good day outside walking and spending my time with friends cost me at least 1-2 days of rest at home, mostly in bed. Later on, this ratio improved and my body adopted by requiring 10-12 hour a day sleep.

During the summer, I had an opportunity to do daily beach-walks during the evenings, it helped a lot, that was the only physical activity I could do, helped me a lot. By August 2016, I have started to find beach walks pleasant with tiredness as a reward.

Despite that improvement, I had mix of panic episodes, where I thought I was dying but in reality, my heart was just very tired and I needed extensive rest that I couldn't get because I was doing full-time university combined with work. I'm used to pushing myself, always. Several times I went to a hospital because I thought I am having another PE episode and am dying.

There's actually one trick you can take sleeping pills to artificially extend your sleep time if you know that you have to be in suitable condition in the future.

Also, I was taking piracetammum (not sold in the UK, perhaps you can use some other nootropics) to recover my cognitive function. I had severe memory loss at the beginning, as an example: I was telling the story to my friend and literally repeating the same thing 5 minutes after. I presume it was due to low oxygen level in blood. That was especially severe during Summer 2016.

Getting off beta-blockers (November 2016 - December 2016) was very unpleasant as there were frequent chest pain episodes for about a week every time I reduced their dose (gradually). However, there is one specific type of chest pain that you will pay your attention straight away, heart's last call for oxygen I call it. You will realise it as there will be a desire to lie horizontally immediately.

After a year of frequent walks, crazy schedule, constant meditation (conscious breathing) I was feeling relatively good and one of my goals was to start doing sports on 13.05.2017. Swimming was the entry point - crossing 25m pool once for the first time left me breathless. I pushed myself and the situation gradually improved. It felt amazing. Couldn't hold breath for longer than 5 second, however I was capable of doing Aerobic exercises. Joined the GYM in September 2017, where every single training session was always focused on cardio. Was getting "tired" after a few weeks of weights and had to skip the next training to recover.

In 2018, I found myself studying and working on a crazy schedule and doing revolving Gym / Swim / Walk every second day of my life.

I consider myself recovered, however still can't

* do extreme sports (Blood clot risk in case of trauma), god damn it =)

* hold the breath for more than 15-20 seconds

* avoid dyspnoea during hiking or other intensive activity

Please don't consider my publication as a guide to recovery as your situation may be completely different and remember to consult a doctor in the first place before making any decision, it's very serious.

I wish strength/courage and luck not to get another episode for those who are recovering from this horrible condition.

The picture is from Dragon's Back, Hong Kong. (2018)

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aleksandrskrivickis
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10 Replies

I'm so glad you were able to recover so relatively quickly - you do have youth on your side! My PEs were nowhere near as bad - multiple small ones, not life-threatening - but they have left me unable to do as much as I used, and I pay for it if I overdo it. I rather suspect the Xarelto doesn't help - it probably contributes to the fatigue - but at 66 I am nowhere near as active as I should like to be.

aleksandrskrivickis profile image
aleksandrskrivickis in reply to

I can't even imagine how it would be like if I was significantly older. I wish you fastest recovery!

SpeedyH profile image
SpeedyH

Hi there. I have recently started reading this book which you might find interesting. My CP is currently at about 13/14 seconds. And I have a goal of 20 seconds!

Close Your Mouth: Buteyko Breathing Clinic self help manual

amazon.co.uk/dp/0954599616/...

PS. The ‘speedy’ in my name is ironic! 🤣

aleksandrskrivickis profile image
aleksandrskrivickis in reply to SpeedyH

Thank you for a good advice!

cheritorrox profile image
cheritorrox

What a heartening story (no pun intended!)

aleksandrskrivickis profile image
aleksandrskrivickis in reply to cheritorrox

I hope it will / did motivate someone.

cheritorrox profile image
cheritorrox in reply to aleksandrskrivickis

For sure ... we all hope to "get out of this place" .. in my case just a DVT and I'm doing my best to walk it off!

Midnight_Voice profile image
Midnight_Voice

I had a saddle (bilateral?) PE at 59, life-threatening - I spent 20 minutes clinically dead, I’m told, but fortunately they were able to soft reboot me.

Left leg tingles a bit still, sense of smell has gone awry, warfarin is my daily companion; but otherwise back to normal.

Sometimes, I tell people I’m 14 years old, counting from the start of my second go :-)

Suebo2 profile image
Suebo2Moderator

I think that the worst advice you had was in the beginning- stay in bed?

All patients should be advised to excercise as tolerated The way to recover is to help your body dissolve the clots. Immobility simply slows that down and often the reason patients have clots in the first place.

As you had very larde PEs and now a few years down the line are still breathless, you may have chronic thromboembolic Hypertension. I would ask to see a chest physician.

Suebo2 profile image
Suebo2Moderator

Well done you with your steady recovery and a lovely story to read

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