- Antiphospholipid / Hughes Syndrome
- Interviews
Sue's interview
How did all start?
An extra rib caused an anuerism in my subclavian artery (thoracic outlet syndrome). I had a lot of clotting in my left arm. It had been going on long enough that my body had formed collateral arteries. While in the hospital getting ready for surgery to remove extensive clotting in my arm and on heparin, I had a stroke. They though I was alergic to Heparin (HITT).
Do you already have a diagnosis? How long did it take you to get it?
Yes, Three months after my initial hospital stay my bypass clotted while on warfarin. Went back in hospital for a replacement bypass and was tested for Lupus AntiCoag. Repeated test 12 weeks later - confirmed APS
What has been the most useful thing for you so far?
My relationship with my vascular surgeon. She is the person who initially operated on me and coordinated my care. She's open and honest and seeks input from others.
What have been your biggest difficulties?
Finding information on APS.
What do you think about the future?
Still wrapping my head around diagnosis.
