saddle pulmonary embolism

[Alde79]

hi I was diagnosed with a massive saddle pulmonary embolism 9th March, I am worried as when I start to move around for a few minutes my o2 levels drop and my heart rate goes really high , I’m worried this won’t fix itself and i won’t be able to have a shower even again , has anyone else experienced this and how to rectify or if it will be time ? Thankyou for reading

[SpeedyH]

Hi there. I am not a doctor and only have experience of regular PEs but I wanted to reply since you've been through so much. Firstly, it can take many months for the body to break down PEs, it isn't a case that you take the medication and are better a few weeks later. But you should gradually find your breathing is easier.

Saddle PEs are more likely to cause you symptoms for longer as they can cause more of a blockage until they dissolve.

You should be getting follow-ups at the hospital - you should be tested for blood clotting disorders and also scanned to make sure that an undetected cancer hasn't caused the clots. I wonder if you have developed pulmonary hypertension and if you heart is enlarged by trying to pump against the clots. Both of these things will improve over time but wont be helping your symptoms. I think if you haven't had a follow up appointment it might be sensible to contact your thrombosis clinic and tell them about your BP, heart rate and breathing.

One thing I found very helpful was a referral to a respiratory physiotherapist. This is because when our breathing is affected by something or causes us pain we learn to breathe in a way that compensates or limits the pain. When the clots begin to get better sometimes our brain doesn't unlearn these bad breathing habits and this can cause many ongoing problems. The physio will 'retrain' your breathing. If there is no respiratory physiotherapist in your area, Google 'breathing exercises for asthma' as these are similar.

You should gradually start to feel less breathless and I wish you better health soon.

[Alde79 in reply to SpeedyH]

Thankyou so much