Pulmonary embolism advice

[viviargi]

Hi everyone,

Hope you are all ok and keeping safe.

Two weeks ago I was diagnosed with Pulmonary Embolism. I'll be under blood thinners for 6months. Even though my left leg is not completely swollen anymore and it's less painful, I have to say that I'm starting to run out of air again. Seems like I was doing good but now this is happening again. So I would like you to give me advice of what kind of specialist I should visit since I'm thinking to book an appointment with a private doctor. This is all new for me and have no idea what kind of doctor I should look for. Anyone who can help me with that?really appreciate it.

Best wishes

Vivi

[Katinka46]

First thing you need to know is that 98% of people with PEs make a complete recovery. How and who diagnosed it? It sounds as if you had a DVT in your leg. Do you know what caused that?

The breathlessness should ease but it can take a while. Do you know how many clots and where they are? Did you have a CTPA scan, and have you had a V/Q scan?

If after a couple of months the breathlessness is still bad or has worsened go and see your GP. You ask what kind of specialist to see. It is a good question as PEs Affect both lungs and heart. The vascular pulmonary disease units (there are six in the UK) have a mixture of cardiologists and respiratory consultants.

Good luck and let us know how things go.

Kate

P.S. welcome to this forum.

[viviargi in reply to Katinka46]

Thanks for your reply Katinka46.

I went to A&E in Kingston Hospital (London). What I know is that I have a few clots in the upper part of my calf. Seems like one clot travelled to my chest but I had nothing in my Cava vein. The other clot went to just one of my lungs and I also, have a clot by my pelvis that blocks the circulation of the blood to the leg. They did a CTPA scan and scan in my leg. But don't think they did a V/Q scan.

The contraceptive pills and contraceptive ring seems to be the reason of all these clots.

In one week the anticoagulation team will call me for my new prescription. I was expecting someone to see me but with all this situation seems like that's not gonna happen

I much appreciate your message. Will keep in touch and let you know how things are going.

Vivi

XX

[Tia4209 in reply to viviargi]

The follow up for PE in the UK is usually handled by your GP. Some people are referred to a Respiratory Consultant and or a Haematologist especially if the PE was unprovoked ( no obvious reason) The breathlessness can last a long time snd depends a lot on where the PE is in your lung ( I was told this by the Respiratory Consultant)

I am a member of some good support groups on Facebook that are specifically for PE sufferers you may find them helpful too.

[viviargi in reply to Tia4209]

I see. Good to know cause I have no idea how it workd.

I would love to follow those groups you are mentioning. Any specific that you can suggest?

I much appreciate your help.

Vivi

XX

[Tia4209 in reply to viviargi]

Hi again I will pm you later xx

[viviargi in reply to Tia4209]

thank you!😊

x

[Tia4209 in reply to viviargi]

I have sent you a pm x