Support

[Kate020885]

Hi I was diagnosed with bilateral pulmonary embolisms on each of my lungs. I was in hospital for 24 hours then discharged with medication, told that I will have a further scan in 3 months & basically that was it. I am 29, confused, upset & still in shock to be honest I just need some support really

[Hidden]

Hi Kate. Sorry to hear about your PEs. I have never suffered one but I understand that they can be very painful.

I'm not sure what medication they gave you but if it was anticoagulants and this is your first experience of Pulmonary Embolism then it is likely to be temporary, not lifelong. Meanwhile, Anticoagulation Europe or this site can put you in touch with folk who can offer help and advice.

I am sure that the hospital medics know what they are doing but it doesn't sound like they explained the future prognosis very well. If I were you I would arrange to see my GP fairly quickly to chat about what you should expect over the coming weeks. All the best and do keep in touch. You can "message" confidentially on this site you know.

[AnneTS]

Hi Kate. I am so sorry that you have suffered pe's. I have had 3 some 25-28 years ago so there is life to be had afterwards! Coincidentally, I moved 4 years ago and found my new neighbour had had 2 pe's. Needless to say we are both on warfarin for life. When I had my pe's the haematologist at my local hospital wouldn't do any further tests. It was when one of my daughters was pregnant that I suggested she go to the haematologist at the London hospital looking after her maternity care. They tested her and found she had a faulty gene and was borderline non-lupus antiphospholipid syndrome. I was then tested and found to have the same. I would press your Gp to have you properly tested, preferably at a good teaching hospital. Clotting due to Factor v Leiden gene is in about 20% of the population it is felt and isn't quite so serious as some of the faulty clotting gene mutations. Once you know what caused your clots you can manage the situation but you do need to go to a superior hospital to get all the information that you need. They will also help you bridge the warfarin-heparin period if you should ever need an operation.

Regarding paying for Warfarin, I do so agree with you. Insulin is free so why not Warfarin?

There is a great psychological bridge to cross when one has had a pe. Once you get some information and medical support from a good haematologist you will feel much better.

Take care, Anne

[Pete-1]

I had a PE some years ago and I was in hospital for 13 nights for various tests and also to take a course of Heparin which I was told was necessary for the Warfarin to work on its own.

[vegewood]

Hi kate, I had a PE on my left lung, december 2012 and had been on warfarin until october this year. I was in hospital for 3 days i think, and was put on the warfarin. You should have an appointment given to you to have your blood checked (at a anti co clinic)weekly to start with until your reading settles down. If you havent been given this by the hospital i would go to the doc and demand an appointment for the clinic as they check your levels of blood to avoid clotting, so its very important. Ive never had a PE or any clotting before i had one and it is still unknown how i got it, as im only 43 slim build not over weight dont drink or smoke, 1 of life's mysterys. I wish you well and always herer to chat

[kimclark2710]

Hi Kate

I have just left the hospital after 7 days on the cardic ward and I'm also a little concerned of what happens next. At 28 I was the youngest on the ward by a mile and had multiple PEs diagnosed, there was also talk of heart damage but I have heard nothing since it was first mentioned.

The Internet is a great thing but it also can scare you if you don't know what to take with a pinch of salt! I know I am due to be on warfarin for at least six months and that during that time I have to ensure my INR is in range, but how long will it take for me to recover fully? When can I go back to work? Do I see my consultant again? Are there any further tests to make sure the PEs are gone?

I tried asking the hospital doctors some of these questions but they were unsure! It's scary that it can happen to anyone at any time and I know I'm lucky to have had the care I recieved! I just wanted to say that your not alone and that others feel the same way. Hope you have the answers to your questions!

[vegewood in reply to kimclark2710]

hi kimclark2710

when i had my pe they said i would be on warfarin between 6 months to 18 months, and because they didnt find what caused this i was more reluctant to stop taking the warfarin after 6 months, i went to the hospital to see the dr in cahrge of this area and they more or less told me i had to decide, so i decided to stay on them for a bit longer and then go back for a review and, stop the warfarin to have a blood test which would look at my cells and see if it was hereditory(cant spell that), they came back clear so i was happy to stop then. as long as you feel well and mobile there is no reason to not go to work. Unfortunatly there is no test to see if the blood clots have gone, they can take months to disperse, least thats what they told me, they dont do any more screening tests to see if you have more as they cant tell if they are new or old! hope this has helped i know it can be frustrating and hard

best wishes to u