Newly Diagnosed

[anne999]

Hi, I got diagnosed with bilateral pulmonary embolisms 1 week ago. Will be going to the Lister hospital in stevenage for follow up, looking on NHS choices not sure if it's a good clinic ( very mixed reviews ). was wondering if anyone on here goes there and will share teir experience, Mant thanks.

[philcollis]

I wouldn't worry too much about the hospital, what is important is getting the right management of your condition. I have been on 20mg Rivaroxaban for 5 years since having mine. I was also referred to the DVT nurse who I saw on a regular basis for the first 12 months. Mine occurred during a knee replacement operation. (there are alternative medications i.e.warfarin, paradax etc.) Whatever medication you are given it is really important that you take it as prescribed regularly (the medication thins the blood and helps break up clotting) Also whichever medication is given, make sure you read about possible side effects so that you are aware of what might happen when starting your medication regime. Bi- lateral PE's are manageable. Hope that helps

[Harvgal]

Hi Anne. I too had bilateral PE's ( last sept ) I'm 52 - very fit and well 🙃- or so I thought. Since then life resumes as normal - 5 mg Apixaban twice a day but back to exercise and full life. It's a shock - but you get over it and on with life - messes with your head a bit - but this forum good for questions and reassurance. ( lots of people on here with similar story) good luck Gale

[janetythomas1950 in reply to Harvgal]

It's reassuring to know how many people feel messed up in their heads after a PE....totally messed mine up but nearly 4 weeks after the event I'm getting there and feeling like life is getting back to normal. Totally scary when it happened but hopefully onwards and upwards. So good being able to chat with people who understand! Thanks to everyone on this forum. X

[AndySD in reply to janetythomas1950]

Totally agree ! This forum has been a real help. Like so many others here my PE came from nowhere. I was fit and well 57 year old. Suddenly here I am with PE ! Thanks to all for the invaluable sharing of experiences.

[Hidden in reply to AndySD]

Yes, I'm at the stage - and I'm sure everybody else has been through it - where every twinge, every cramp, every minor niggle, is another blood clot forming or settling.....

[philcollis in reply to Hidden]

Remember that your medication helps and when you get those 'twinges' have a little walk about to get the circulation going

[mickeyadamsthefirst]

Got hit by a car in 2009,stopped taking it after a pulmonary apt doc said stop taking ur warfarin after three years, then he tells me I have emphysema, I said why didn't you tell me then? he told me they were worried about the massive blood clot then. it's like l'll be. Mick

[Hidden]

Hi Anne - I was just diagnosed on Thursday with bilateral PEs, very scary! They've put me on rivaroxoban, at the moment 15mg twice a day, and then I gather I transition to 20 mg once a day in about 3 weeks. I am still waiting for an appointment to see the specialist at St Thomas' in London (where I went to A&E last Wednesday evening).

They think mine were caused by a chest infection that I didn't even know I had - I hadn't been feeling quite 100% for the past few days, but thought it was just One of Those Things, especially as it's been so very hot. So it was quite a shock to the system to discover I was Properly Ill! Getting better now - I've finished the antibiotics, and so I expect in a day or so I'll be able to sort out what, if any, side effects the rivaroxoban is having.

[anne999 in reply to Hidden]

Scary isen't it

[Hidden]

Very! However, they don't seem to think it is life-threatening, and I'm sure that, once I settle down, all will be well. All the same, I wonder when I shall stop thinking that every twinge (and I'm getting fearful indigestion from the Xarelto) is another clot forming.....