Sticky Blood-Hughes Syndrome Support
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My Day of Hell

It all started a few weeks before I went into hospital, where I was having bad pains in my legs and chest. Me being only 20 thought nothing of these pains and carried on with my life as normal.

That was until I took the rubbish out 1 morning and passed out on my doorstep. I tried to stand up but every time I did I could see all these colours and I couldnt focus on anything. Luckily my housemate was still at home so I phoned her from outside the flat to tell her what had happened and to ask if she'd take me to hospital, of course she obliged.

Upon reaching the hospital, I must have explained my story to what seemed like 100 different doctors. They sent me for a chest xray, they gave me beta blockers as they thought I had something wrong with my heart. I was violently sick and then began to have a panic attack which seemed to last forever.

A few hours later they tried to take my pulse, but could not find a strong enough vein, all my blood was pumping to my organs where it was needed.

They eventually worked out what was wrong with me and sent me for a CT scan, which showed that I had a major pulmonary embolism and they would need to operate on me straight away. Obviously I did not know the severity of this until a few days later. So they wheeled me through to the operating theatre and inserted large metal skewer type objects into my groin and up to my lungs. I was awake through the whole procedure and was that oblivious to the severity of it that I was watching everything on the screen above me.

Once that was done and I had survived it they took me to intensive care where I spent the night, full of various tubes.

The next day I was able to go down to a different ward as they were happy with my recovery. It was not until a day or two later where I actually found out how serious this whole ordeal had been. One of the doctors told me that in 5 years of experiencing cases like my own, I was the only 1 to have survived.

This all happened 5 years ago, I now have to take warfarin for life and when it comes to being pregnant I think will be a whole new ordeal in my life, but hopefully 1 that is completely worthwhile.

When life gets on top of me I remind myself of this day and it makes me grateful to my wonderful friends and family and how my life is coming together nicely!

Thanks for reading

8 Replies

Thank you for sharing such an inspirational story from one to have suffered too much too young - keep strong, keep positive you are a survivor





Hi hon

welcome and glad you found us. What an ordeal you had, I hope you doing ok now. So glad you have supportive family and friends :-)

Hopefully with the right meds and care during pregnancy you will be ok.

A good source of info if you need it as well as here, is the Hughes syndrome foundation at

Lots of fantastic people on here who will be here when you need to share the bad days and celebrate the good days.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


Welcome, and I am glad you have told your own personal story! There are many on here who have similar and I am really pleased that your care turned out to be of the right sort! Mary F


Welcome to the group thank you for sharing your story, please do ask and you will find support and information here we do not bite and will help where we can.



Welcome and I'm so glad you have a positive outcome to that story.


Hi, glad you come through what must have been very very scary . All I can say is that I have been in warfarin for the last 15 years from the age of 30 and and had another baby in the meantime it has been ok . There have been times that my inr has been a but erratic and a few other symptoms kicking in now, but not sure if this is to do with APS. Glad you have found this site it is more helpful than the doctors at times. :)


My story is similar to yours only I was 25 years old and 20 weeks pregnant, and mine was a heart attack. O Was in icu for 5 days, then got to go to a regular room.Because I Was pregnant thepy would not use the angioplasty to break the clot up so i was in icu with massive heparin iv's. This was 16 years a




Hi all

At the risk of coming across like a large vulture circling you - our charity is collecting dramatic patient stories like yours to help in our campaigns and awareness raising.

If you would be happy to share your stories, please contact me on and I will send you our questionnaire so we can keep you on file for the future.

We wouldn't be able to do any of our publicity: without the help of brave people willing to share their stories, so please do get in touch if you think you can help.

And a massive thank you to all of you who do already - very much appreciated :)


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