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!!!)