I'm 3 months into a PE recovery. Bilateral clots in both pulmonary arteries and extensive clots in both lungs. This is a 2nd PE.

[Maddanj]

The first was mid 2010. I had no pain with this PE and no sign of a DVT, only increasing breathlessness. There was right heart strain which had recovered after 3 weeks.

The NHS A&E dept protocol had changed since 2010. I was given blood tests, ECG and a chest xray. A&E doctor gave me lower risk score than I should have if they had kept me in and given me the CT scan.

They diagnosed a potential PE and I was sent home with Rivaboroxan and asked to come back to a clinic in the morning for a CT Scan.

The CT scan results confirmed the extent of the PE and I was told I need to stay overnight on the acute ward for my vitals to be monitored. Access to consultant / senior medics was difficult. There was no respiratory specialists available to interpret my scan results or advise me. I was discharged the next day and had to fight to get to see a respiratory consultant within the first 3 weeks as my first joint respiratory / haematology clinic appointment was set for 3 1/2 months later.

There appears to be no advise on what exercise is acceptable in order to aid recovery and it causes anxiety as you dont know if you are doing the right thing - being too or under mobile. You're advised not to exert yourself or get out of breath and not do any weight bearing activity.

I heard that that Bath hospital are introducing an exercise class for this reason. I have asked my doctor for a referral.

[cheritorrox]

Wow what a nightmare. I wish I could help but, sorry, don't know enough. I've "only" got a DVT in leg which hopefully is on its way out (won't know til June). The situation is therefore obviously very different but I try to walk at least 5km a day (weather permitting!), do yoga/pilates and swimming.

[Hidden]

When I had my PEs, I was sent straight to the nurse practitioner in the haematology department, who loaded me down with leaflets and answers to all the questions I hadn't actually thought of! Then they referred me to the haematology team at Guy's/St Thomas, and the appointment came through next day for a few weeks hence. I do think it's a postcode lottery, though.... As for exercise, you may well find you simply can't for a few weeks/months while you recover - but do what you can as you can. Swimming is good, as is walking. I did join a cheerleading class for a time, which was fun, but I got bored with it as there was no coaching, and so no way to improve.

[subo2 in reply to Hidden]

Don’t forget that you are breathless because of the clot blocking arteries in your lungs. If you do too much then you will increase your heart strain. Gently increase your mobility day by day and don’t expect too much too soon. You’re not unfit, you are poorly. It will get better.

[Maddanj in reply to subo2]

Thanks Subo2

I was breathless at the time the PE was diagnosed but anticoagulants resolved this to a great degree and the right heart strain righted itself, thankfully in the first 3 weeks.

I'm also suffering fatigue from burnout from work so it's difficult to separate both.

There should be better and consistent advise for PE patients within the NHS because being told not exert yourself or get out of breath or not do weight bearing exercise does not help us to maintain any muscle strength whilst in recuperation and leaves us with another issue to deal with later.

[Phildob]

I had Phlebitis, DVT and PE.

I can recommend 30 mins morning and 30 mins night walking. no running, swimming, cycling and any activity which makes your shin and calf muscles contract, it helps pump the blood. Slow and regular exercise makes the blood move round. Also lying on the floor with legs raised is good, makes the heart work and shifts the blood round, takes the strain off the valves in your veins.

[Hidden]

What I was told when I asked about exercise when I was discharged after my Pe in 2017 to do what you can and stop if you feel unwell