Sticky Blood-Hughes Syndrome Support

My APS experience

My APS experience

I seem to have discovered this site by accident!! But how interesting and informative it is to read stuff by others who have the same condition.

I got Pneumonia in January 2008, just before a planned ski trip to the USA. I was determined to go on holiday, since everything was already booked, but had no idea of the implications that travelling abroad would have.

On the second day of the holiday I felt so ill that my husband took me to the local doctor. A X -ray revealed that my left lung was just a dark mass. (Have since wondered if the mass was a PE). I was admitted to hospital where I ended up in ICU. Most of the early days in the hospital are a blur.

The physicians tried every antibiotic they had to ease the pneumonia, but nothing worked. It was then noticed that my spleen was enlarged and bleeding. And the daily scans began to reveal clots in one of my kidneys, as well as liver and Hepatic vein. The doctors began asking questions such as had anyone in my family suffered clotting problems.

Anyway, to cut a long story short, they had to remove my spleen in order to begin anticoagulation (they couldn't while my spleen was intact in case it ruptured). While all this was going on they kept doing test after test and finally diagnosed that I have APS.

I spent a whole month in Barton Memorial Hospital and cried when I left because of the incredible support and dedication that the nursing staff showed me while I was a patient. I still keep in contact with one of the ICU nurses. And I often wonder if I was meant to go to the USA to receive such incredible care (and a $200,000 bill!)

I was told to give up horse riding and skiing too, but 4 years on I still do both - albeit wearing suitable protection and after much risk assessing! I love my life, and now having discovered this site, feel that if I have any questions about Hughes or doubts, that I can ask the people on here for support (especially

liked reading about brain fog - I just thought that I was getting a bit senile!!!)

Thank you

6 Replies

Hi Sue Jane and welcome to the site! Thank you also for sharing your story to date.

I was diagnosed in November last year and have found the site to be a god send, with lovely people sharing their APS life story and support - Incredibly inspirational people here, you will find out :)

Keep well, keep doing the things you love and be healthy and happy





Wow Sue! I actually thought $200,000 was cheap for 1 month in a US hospital which included ICU, surgery and scans etc!! $2 Million would have been more like it!!

I think your story will really have encouraged the many members we have from the other side of the pond who often struggle to find good care for APS. You are a shining light for them that it is there and the Doctors obviously knew what they were doing.

And well done you for having such a positive attitude and sharing your story. I know we will love having you on here and you will always find someone willing to help you out with any questions or queries you may have in the future.

Thanks again for sharing your story and the lovely picture too.


Hi Sue

Ive just posted my first blog too.

Love the picture of the horse, I have 4 horses and have just started riding again even though the doctors warned me against it. You've got to live this life and take a few risks along the way and I figured I know and trust my horses to take care of me!

ARe you from the UK?



Hi Helen,

yes we live in Northumberland near the Scottish Border.

You have to ride if you love horses. I totally trust my horse and don't ride anything else unless I make a thorough assessment first.

Life is way too short to sit in a chair and do nothing, I want to enjoy it to the full especially now that I have this diagnosis.

Good luck



Hi Helen, love the horse. I came to a "deal" with my hematologist: I would give up mountain biking but I would continue to ride on low traffic roads and rail/trails (and no downhills over 30MPH.) But really, in my experience, although I do bruise and bleed more then I did before the warfarin, I do not do so excessively -- say -- compared to my husband. I remember as a kid concluding that my friends who needed band-aids after a cut were just "wimps," because it took a seriously deep cut for me to need one at all. Proof to my 8 year old mind that I was "tougher."


Hello there and welcome and thank you for the very useful addition of your own journey with this. Glad to hear of your sustained interest in fun activities! Mary F x


You may also like...