Pulmonary Embolism - Experiences??

[londonkiwi]

My DH had PE in both lungs, diagnosed 5 days ago. He is still in lots of pain - it took them a week to diagnose and the doctors said today he could easily have died.

We have DC3 due in 5 weeks and are struggling to get info about the long term effects. If you've had PE please comment! Any info e.g. how long did shortness of breath/pain last? Have you had lasting lung damage? Is it a hassle taking warfarin? And anything else you want to say!

No personal experience, but I know 2 people who have had a PE, one at least 10 years ago and the other about 5 years ago. Both absolutely fine with no after effects! So try not to be too worried

InSpace thanks very much, great to hear. It's so demoralising hearing him out of breath after a short walk. Will try and stay positive ...

The pain was horrendous....but no after affects at all. Only thing is that he is careful when having surgery or flying.

My DH had one this time last year. He was in hospital for 4 days after initially refusing to go to A&E cos he was being a dick while I worried myself sick. The injections to thin his blood (while the warfarin got in his system) left his tummy black and blue and he had to go back on them a couple of times in the first few weeks while his INR levels stabilised.
He returned to work after a fortnight, on light duties for about a month.
The pain went within a couple of days but he was short of breath and tired very easily for a few weeks.
The shock of it all made him re-evaluate how he had been treating his body generally, and he ditched the junk and fatty foods. He lost over 2 stone by Christmas. Alcohol was limited to 'a beer a day' because it thins the blood too much, but he got used to it. It helps to keep yourself hydrated and eat regularly, things he was normal neglectful about but after realising the impact that had on his INR levels- a couple of injection sessions- he got to grips with it.

Taking warfarin isn't a hassle in itself but your INR levels have to be checked regularly- twice a week initially which for DH was at the local hospital. Over time, the gap between appointments lengthened until they were a month apart.
After 6 months he was referred to the haematology clinic where they did scans and blood tests as his PE was unprovoked, and they wanted to see if there was any underlying cause. All his test results came back clear and he was taken off warfarin a couple of weeks ago

The only issues we've had have been that he could only take paracetamol and amoxicillin safely, most medication affects the INR level so even over the counter stuff has to be checked out and is usually not ok. He recently had a couple of teeth out and didn't completely stop bleeding for 3 days. He's also had to be really cautious about cutting himself as anything big enough to need a plaster would probably also require a trip to A&E.

If I'm honest, I thought it was the end of the world when it happened so I know how scared you feel right now, but it's not all doom and gloom and the outcomes are usually good long term

Thanks very much for your replies howstheserenity and marriednotdead, reassuring to hear!

I have also recently been diagnosed with a Pulmonary Embolism. Your experiences are very helpful. What about exercise? Mine is linked back to an operation and I would like to start gentle exercise. Is it safe to swim, cycle, long walks etc?
Also what about travelling either by plane or longer distances than a local trip by car or train? Any advice would be v helpful.

OP - good luck to your husband and for the new baby.

Thanks.

The thing to do is keep the blood flowing! No sitting for long periods or doing restrictive things like crossing your legs. Flight socks are a must for long journeys and we were advised that DH should get up and walk about every hour or so.
Exercise is fine, but pace yourself and if you feel tired or breathless, stop for a rest.
Just remember that the oxygen supply is restricted until the PE dissolves so less fuel is available to the body.

Hopefully by the time your newest arrival puts in an appearance, your DH will be feeling much better